No CDC Funding for CFS?

cdclogoME/CFS advocates focus almost exclusively on research funding from the National Institutes of Health, and with good reason. But now it appears that funding for the Centers for Disease Control’s CFS program may be at risk in the 2016 appropriations bill. This is not a done deal, and many people believe we should advocate for continued funding. I do not.

Funding or No Funding?

The first step in the federal appropriations process is at the committee level in the House and the Senate. Each committee approves the text of an appropriations bill, and submits an accompanying report for consideration by Congress.

On the House of Representatives side, the appropriations committee report recommends $5.4 million for the CDC’s CFS program (see page 39 of the report). This is the same amount of funding as in 2015. The House appropriations bill does not specify funding for CFS or any other program within the Emerging Zoonotic and Infectious Diseases branch, but only recommends aggregate funding (see page 44 of the bill).

On the Senate side, the appropriations committee report explicitly declines to include appropriations for the CFS program (see page 59 of the report). It is the only program in the Zoonotic branch that the committee declines to fund in 2016. The Senate appropriations bill, like the House bill, only recommends aggregate funding for the Zoonotic branch (see page 52 of the bill).

So the House and Senate committees have approved the appropriations bills. The House committee report recommends CDC CFS funding, and the Senate committee report does not. The next step in the process is a vote in each house of Congress on the appropriations bills. However, with Congress now in a five week recess, these votes won’t happen until September.

It is very important to understand a couple of things. First, neither of these recommendations is a done deal. The House and Senate have to vote on their versions of the appropriations bills. You can track the status of each bill as it winds through the process in the House and the Senate.

Second, even after these bills pass in the House and Senate, the differences between them have to be reconciled. The House bill allocates $460 million to the Zoonotic branch, while the Senate bill allocates $388 million. The many differences between these bills have to be reconciled in a budget conference, and then the reconciled bill has to go back to the House and Senate for a final vote. All of this has to be completed before September 30th in order to get the bill to the President and avoid a government shut down.

Third, the conference reports are not binding. Just because the Senate recommended killing the CFS funding does not mean CDC has to do it. CDC can spend money on the program even if the conference report does not recommend this. However, if CDC is looking to cut back or kill the CFS program, then the committee report certainly gives them political cover to do so.

Fourth, we don’t know why the Senate committee report declined to recommend funding. Was it because the committee didn’t hear from the public about the importance of the program? Was there a staffer who advocated this? Or was it simply a matter of looking for places to cut, and this was an easy target?

Multiple sources have expressed deep concern to me about the prospect of no funding for the CDC’s CFS program. Among other things, the CDC’s multisite study would be in jeopardy. I certainly respect these concerns, and I also respect the fact that the multisite study is an important epidemiological effort that provides revenue to the seven contracted participating sites. But there are powerful arguments on the other side too.

Why Not Support CDC Funding?

Let’s not forget that the multisite study has design flaws, although it did provide useful data to the IOM committee as they constructed the new SEID criteria. The multisite study is, of course, not the only effort in the CDC’s CFS program. The much maligned ToolKit and Medscape education units are part of the program too. CDC has resisted many recommendations by the CFS Advisory Committee, such as putting a “black box” warning on exercise recommendations. Furthermore, CDC has made no public statement about whether it will adopt the IOM’s SEID diagnostic criteria (or even just post-exertional malaise as a required symptom), and this is inexcusable given that the IOM report was published six months ago.

The potential danger that the CDC education program can pose to ME/CFS patients was underscored last week by a new posting on FedBizOpps. The post is a “Sources Sought” request from CDC for a new education effort, and the details are very troubling.

“Sources Sought” is a specific kind of request for information. Basically, the government needs to establish whether there are sources or contractors who can do the work under consideration. In this request, CDC is looking for contractors who can produce radio segments and interviews to educate the public about CFS.  The idea is expressly modeled on the Memory Loss Initiative, which has collected more than 1,800 personal stories from people living with memory loss.

On the surface, this sounds like a great idea, right? I mean, what advocate does not want the personal stories of people living with ME/CFS to be publicized? But read the posting closely. The CDC uses the name “CFS” with no mention whatsoever of ME. The description of CFS is drawn from the Fukuda definition, not IOM SEID or any other definition that requires post-exertional malaise.

Furthermore, the CDC modified the posting yesterday. The original posting acknowledged that most physicians did not know how to treat and manage the illness, but that has been deleted. Of course, who is responsible for the lack of competency among physicians? CDC and the medical associations. The original version also stated, “CDC will identify subject matter experts to serve as a steering committee or reviewers of the content.” Not surprisingly given the reaction among some advocates online, that statement has also been removed. But don’t let that fool you. This is a Sources Sought request, not the actual contracting opportunity. CDC is unlikely to pay a contractor money and not retain control over the final product in some way.

Not For Me, Thanks

This FedBizOpps posting is just the latest example of how CDC does not understand this disease. CDC refuses to admit that PEM is a distinguishing feature of the disease; refuses to acknowledge that exercise can be harmful to people with ME/CFS; refuses to use any aspect of the IOM report; and refuses to specify an appropriate diagnostic code. And many of CDC’s actions regarding this disease over the last thirty years have been harmful to patients, or just plain wrong.

Personally, I don’t want to pay CDC to persist in its approach to ME/CFS. Why should we? What’s in it for patients? I see no reason to invest my limited capacity in advocating for funding for a CDC program that is largely mistaken and misguided.

I want a CDC program that studies my disease, and that recognizes the central features including PEM. I want CDC to take the lead on educating physicians about my disease, so that all patients can be accurately diagnosed and appropriately treated. This means the end of blanket endorsements of graded exercise therapy and cognitive behavioral therapy as treatments. I want “chronic fatigue” to be excised from the CDC’s approach to ME/CFS once and for all.

Has the multisite study been a step in the right direction? Yes. Does this mean we should support funding for the CFS program? No.

The FedBizOpps notice, the silence on the IOM report, and other CDC initiatives are based on the erroneous view that Fukuda is an adequate definition for the disease and that PEM makes no difference in how one should diagnose and treat patients. If most patients are undiagnosed, it is because CDC and the public health complex have utterly failed to educate physicians about this disease, in part because of the dedication to Fukuda and Reeves’ empirical definition. Every single one of us has been told, early and often, that we need to exercise our way out of this disease. Who is responsible for the pervasiveness of that “treatment” approach? CDC.

I won’t be writing to Congress to ask that the CDC CFS program funding be cut. But I most definitely will not be writing to support the funding, either.

When I weigh the positive things about the CDC’s CFS program against the harmful and negative things, I come up short. When I think about the harm done by CDC’s persistent recommendations for exercise, I come up angry. The program is not 100% bad, and I know that many people in the ME/CFS community believe it should continue. But overall, CDC’s current approach to this disease is not worthy of my support.

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225 Responses to No CDC Funding for CFS?

  1. I agree. The current configuration of CDC’s CFS program should have been deep-sixed a long time ago. I just don’t know if a lack of funds would shut the program (not to mention the website) down. It would, however, probably stop the new “education” initiative, which looks like a reprise of the one done a decade ago with the cooperation of the CAA (now the “Solve CFS Initiative”) – pictures of good looking models with their heads leaning against their hands, sigh, poor tired thing … and a reference to the abominable website.

    • Cort Johnson says:

      I find it amazing that an effort to have people with ME/CFS tell their stories is met with such derision!

      Or that those very professionally done images – done as I remember for free by an outstanding photographer sympathetic to the ME/CFS community – in a travelling exhibit – is also met with such derision. ‘

      What did you want? People with oxygen tubes coming out of their noses? People curled up in wheelchairs?

      Do you really think that would have worked? I don’t.

      • That’s exactly what I mean, Cort. People who are in wheelchairs and people who are bedridden – particularly young people. Why not take pictures of actual patients – gasp!

        And it’s not just me – a lot of PWC/ME’s despise those pretty pictures.

      • Laurel says:

        Cort, I wonder why you think this would not work? It’s the unfortunate reality for many of us. So many seem to have the false conception that people don’t want to look at images of patients with severe ME. Yet, with all the uplifting blog posts I have attempted to write for my blog, my most popular post by far is my testimony that shares photos and stories of those suffering with severe ME. As uncomfortable as it may be to have to look at these patients, people NEED to do so. If you are not aware of a problem, you have no motivation to fix it. And if all you’re looking at are photos of people yawning, or simply looking tired, few people are going to think that’s a major problem that needs immediate action.

        • William says:

          I agree w/Mary and Laurel, as I’m sure millions of others do.

          We’re waiting for your answer Cort.

          • Cort Johnson says:

            Because people who understand ME/CFS and have a background in it – can get images of people with tubes in their nose – but people who don’t have a background in would probably get turned off by that. I think Laurels video is very well done and people could get something like that.

            On other other hand, the way it was done in the media campaign had its merits. It presented pictures of faces of people with ME/CFS and told their story. People were drawn to the faces – they wondered who were these interesting looking people were a- and then they read their stories and they learned about ME/CFS.

            If you had a person in wheelchair in a big photo in a mall – I’m not sure as many people are going to get up that exhibit and read about. I think it would probably scare some people away or not interest as many people.

            I don’t see any reason for CAA’s approach to get such derision. It makes perfect sense to me. (????)

          • Red Panda says:

            This disease is not taken seriously. Can Cort agree with that?

            Showing tired people does not increase understanding that millions of people are bedridden.

            Research and government descriptions and government discussion talk about people who are NOT bedridden as Laurel is. Why is that?

            Maybe because we ourselves are not taking the disease seriously.

            Thanking Congress for stopping funding something (and telling them to earmark much more money for science) is a man bites dog story.

            The media will report on it and they will have to find out our side of the story.

  2. billie moore says:

    Jennie,

    Your analysis is out-of-the-box thinking, and I think, correct. The knee-jerk reaction (it was mine) is to be horrified that the CDC’s CFS program was being recommended by the Senate appropriations committee not to be funded. But every point you make is right. It seems very likely that no other website probably puts out more harmful, yet believed-as-gospel information about ME/cfs than the CDC’s. And they at the CDC continue to dig in and refuse to change all of those points you mention in their informational materials and website.

    I wonder if someone on the Senate appropriations committee, or one of the staffers of same, actually knows the problem with the CDC and ME/cfs and got that appropriations amount removed. Most likely, as you say, it was a handy place to cut. However, some in the Senate do understand this disease and the problems the patients and advocates have with the CDC.

    Your clarity of thought and terrific information-finding and -explaining talents are so very valuable to this community. Thank you for all you do.

    • Jennie Spotila says:

      Thank you, Billie! I had the same knee jerk reaction you did. It wasn’t until I gave it more thought, and that FedBizOpps notice came out, that I realized the full implications of continuing to support the program.

    • Cort Johnson says:

      All I can say is the CDC multi-site study. Hundreds of ME/CFS patients seen at the top ME/CFS experts put under the microscope. Subsets identified, the definition improved, effective treatments never used by ordinary doctors identified. The biggest exercise study ever done. The cognitive impacts of exercise validated. Lactate shown to be a cause of PEM in a subset of patient.

      That’s just one study. Read my other comment. How quickly we forget. How quickly we lapse into mostly outmoded ideas. This how the CDC website introduces ME/CFS:

      Chronic fatigue syndrome, or CFS, is a devastating and complex disorder. People with CFS have overwhelming fatigue and a host of other symptoms that are not improved by bed rest and that can get worse after physical activity or mental exertion. They often function at a substantially lower level of activity than they were capable of before they became ill.

      Besides severe fatigue, other symptoms include muscle pain, impaired memory or mental concentration, insomnia, and post-exertion malaise lasting more than 24 hours. In some cases, CFS can persist for years.

      Researchers have not yet identified what causes CFS, and there are no tests to diagnose CFS. Moreover, because many illnesses have fatigue as a symptom, doctors need to take care to rule out other conditions, which may be treatable.

      Now what the heck is so bad about that?

      Here’s what they say some possible causes are:

      infections
      immune dysfunction
      abnormally low blood pressure that can cause fainting (neurally mediated hypotension)
      nutritional deficiency
      stress that activates the axis where the hypothalamus, pituitary, and adrenal glands interact (the HPA axis)

      That’s really horrible isn’t it?

      This is what they say about exercise and PEM

      While vigorous aerobic exercise is beneficial for many chronic illnesses, CFS patients can’t tolerate traditional exercise routines. Exercise programs aimed at increasing aerobic capacity are not recommended early in therapy.

      The majority of people with CFS are affected by post-exertion malaise, which is defined as intensifying of symptoms following physical or mental exertion, with symptoms typically worsening 12-48 hours after activity and lasting for days or even weeks.

      It’s important, however, not to avoid activity and exercise altogether. Such avoidance leads to serious deconditioning and can actually worsen other symptoms. It is also important not to engage in an endless push-crash cycle in which patients do too much when they feel better, crash, rest, start to feel a little better, do too much again, and so on.

      I have some problems with this but I think many ME/CFS experts probably agree with it. Dr. Klimas certainly does.

      Their exercise prescription is for very, very light “exercise” that is attuned to the condition. Only if tolerance develops is it continued. Nowhere is exercise even hinted at being a cure.

      • Jim Ellsworth says:

        Well, if I can stand long enough to make a coffee, maybe I’ll consider some “exercise”…

      • William says:

        “Researchers have not yet identified what causes CFS, and there are no tests to diagnose CFS. Moreover, because many illnesses have fatigue as a symptom, doctors need to take care to rule out other conditions, which may be treatable.

        Now what the heck is so bad about that?”

        1. Researchers have identified many possible causes.

        2. There is a diagnostic test and you know it. Staci Steven’s 2 day treadmill test diagnosis ME/CFS with 90% accuracy.

        3. “Fatigue” is not a symptom of ME/CFS. As Dr. David Bell M.D. says, “fatigue is not present in ME/CFS because ‘fatigue’ implies normal recovery after exercise”.

      • JD says:

        Thanks you, Cort, for posting that summary of the CDC website. I was personally quite impressed when I read it myself fairly recently. I was diagnosed back in the ’80’s and the CDC has come a long way, for the better, since then. The wheels of bureaucracy turn slowly, but I agree with you that they are turning in the right direction.

    • Brian Vastag says:

      As someone who has recently become an advocate, I find this discussion incredibly discouraging. Rehashing the crimes of the past is never going to make good things happen. The CDC multi-site study is clearly a hugely important step forward. Anyone who wants to see that study ended is not, to my mind, and ME/CFS advocate.

      As for the CDC ME/CFS line item: Apparently no one here knows why the Senate version was zeroed out. There could be a dozen different reasons for this – from a simple mistake to a nefarious plot by an evil puppet master. A smart advocacy movement would use all of its contacts at the CDC and on Capitol Hill to try to understand WHY the line item was zeroed out. Only when we know the answer to that will we know the best way to try to get that money restored in the Senate bill.

      BV

      • Bob says:

        Brian Vastag said: “As someone who has recently become an advocate, I find this discussion incredibly discouraging. Rehashing the crimes of the past is never going to make good things happen. The CDC multi-site study is clearly a hugely important step forward. Anyone who wants to see that study ended is not, to my mind, and ME/CFS advocate.”

        Brian, as someone who desperately wants to see the multi-site study continued, I think your comment is unfair. If you take into account the vast amount of distrust and bad feeling towards the CDC, which goes back for decades, then it’s easy to understand why people aren’t interested in the CDC continuing to study ME/CFS. People consider that the CDC has done its utmost to destroy patients’ lives over the years, when it should have been doing the opposite. And there is not enough trust for people to believe that things are about to change for the better. The CDC has a lot to prove, and people aren’t going to forgive them in a hurry. It has to earn trust. And if people are of the opinion that the CDC is harming people, then why should they want to see it continue to ‘support’ ME patients?

        Everyone is entitled to carry out their own advocacy efforts based on their own experiences and perspectives. There’s no right or wrong way to make progress. This is a difficult issue that our community has to grapple with, like many of the other difficult issues we have to grapple with.

        • Cort Johnson says:

          The problem is Bob that you have ignore the good work that the CDC has done in order to make those statements. And using the distrust from past as a justification to wreck a good program that’s occurring now – a program that many of our top physicians do trust and are working with – is not really a great idea.

          • Bob says:

            But it’s not just distrust from the past, Cort. It’s current distrust. People consider the CDC to be currently harming our community, via bad cohort selection methods, via bad educational/promotional material, and via the belief that ‘fatigue’ equates to ‘ME’ (i.e. that PEM isn’t a cardinal symptom.)

            I totally agree with what you’ve said about the multi-site study. I agree that the various diagnostic criteria are an irrelevance to the multi-site study because sophisticated stratification will be carried out after the data is collected. The CDC appears to be starting from scratch on a project that it should have started 30 years ago. I think it’s possibly the most important research undertaking that’s ever been done for ME/CFS because of it’s scale and scope. And i think we’d be doing ourselves a massive disservice if we were to lose it. I also think that Dr Unger is a sincere scientist, who wants to follow the evidence, and who has already transformed the ME/CFS research program at the CDC.

            But, judging from the responses we’ve been getting in this comments section, we’ve got a very long way to go before we convince the rest of our community that the multi-site study is the best thing that’s ever happened to our community. A very long way. And I’m very sympathetic to those who believe that the CDC is actively harming our community. My optimism is often proved misguided, but an optimist I remain!

          • Cort Johnson says:

            🙂 I appreciate your reply and I agree that it’s going to take a long time, longer than this post will be in play, for people to lay down their distrust or even be open to the idea that the CDC is doing good work. It may take ten years of good work for some people to be open to that. That may not have ten years. They may not have one year and that’s the problem and that’s where the urgency of my posts come in.

            You said “I think it’s possibly the most important research undertaking that’s ever been done for ME/CFS because of it’s scale and scope. And i think we’d be doing ourselves a massive disservice if we were to lose it. I also think that Dr Unger is a sincere scientist, who wants to follow the evidence, and who has already transformed the ME/CFS research program at the CDC.”

            and that also you’re “very sympathetic” to those who distrust the CDC.

            Maybe I should be more sympathetic – I probably should 🙂 – but the problem is that the time is now. The CDC program and Dr. Unger and the multisite study and the exercise and all other studies could disappear – and some people on this thread are arguing that it should disappear.

            Note that most are not arguing that it should disappear because of something the CDC is doing now – they’re arguing that it should disappear because of something it did or didn’t do in the past.

            That’s an understandable argument but I’m sorry it’s’ not a good enough one when studies like this are at stake. I urge people to let go of the anger and the hurt a little and yes, the distrust and give the CDC a chance. It doesn’t hurt, after all, that the CDC go forward. Aside from a few problems with the website they’re not doing anything that can hurt the ME/CFS community now. They’re doing good research. They’ve done good on the educational front.

            They’re not doing CBT or personality or mood disorder studies – the people who did those are gone. They may not be doing everything everyone wants – they may not be doing the kind of PEM studies everyone wants, they may not approaching the definition the way everyone wants, but there’s no harm in them moving forward. There is considerable possible upside though.

      • Lois Hart says:

        If one doesn’t study history one doesn’t learn. The history DOES matter because the history is institutionally ingrained. Know the enemy. And Mr. Cort is no friend to the sufferers of this disease. He does however follow the money. If he is here, he is employed. And I will be put on the anti-first amendment troll lists.

        I must agree with the legislative analysis given, rather dispiritedly.

        • Jennie Spotila says:

          Lois, please refer to my blog policies. You’ve singled Cort out by name for a personal accusation. I enforce the policies even-handedly. If Cort said something about you, I would give him the same warning. In fact, I think I did give him a warning somewhere high above in this thread. If you abide by my policies, you are welcome to comment.

        • cort says:

          I hope that your analysis of the CDC program is more thoughtful than your assessment that I am “following the money”. How in the world can I be following the money when my site is essentially donation-driven.

          I hope you have an understanding of that means financially. If you don’t – let me make it clear to you – no one makes much money by providing free information and asking for donations.

          With regard to the institutional bias being ingrained – that can happen but institutions change all the time. Of course in order to determine that you have to assess what they do from time to time – which you apparently have not done.

          Check out this blog here for an assessment of the CDC’s research over time – http://www.cortjohnson.org/blog/2015/08/11/the-cdcs-chronic-fatigue-syndrome-research-program-boon-or-bust-a-review/

          • Anonymous says:

            Just because someone does not agree with your assessment of something does not mean they have not done their own assessment.

  3. Joe Landson says:

    I also agree. CDC has the wrong tools for the job. They have the wrong doctrine and wrong assumptions. I would only go further and insist they defund CDC’s efforts on the illness, on the delusion they would listen to us.

    • Jennie Spotila says:

      The main reason I don’t want to undertake a defunding effort is that I don’t have the spoons! I want to focus on NIH.

    • John says:

      I also agree. The CDC is just proceeding with a wrong philosophy (as in sophistry) as they always done. They’ve always cause much more harm than good. And whenever they do a study on Fukuda CFS., there are a bunch of articles quoting CDC people (usually with a middle-aged woman napping as the main image ) saying basically: “Oh, it’s very serious (chuckle, chuckle), we looked at twenty-thousand genes and some things were ( a little bit ) weird in different subsets.” And when they do this some, usually the same, people always stand up and say: “Look! CDC doing good, we have to put up with them.”

      –They’re whole approach is wrong. It’s like if you were the admiral of a modern navy and said “but what I really want is more battleships!”.

      Corrupt or just stupid? I think institutionally corrupt and too corrupt to care they are corrupt.

      • Cort Johnson says:

        You just stated the CDC is institutionally corrupt without giving any reason why you think that.

        Why don’t you check out their multi-site study and then tell us how that is institutionally corrupt.

        Or maybe you should check out their gynecological study or their innate immune study or their natural killer cell study or their basal ganglia study. Or maybe you should check out their educational video’s and show how corrupt those are.

        I could go on and on. The fact is you probably don’t have a clue about the work the CDC is or isn’t doing.

        • John says:

          Well I read Osler’s Web. I used to listen to the CFSACs (2010-2013ish) where they gave non-answer answers to both the CFSAC members and the publics’ questions.

          I remember when they announced in 2005(?) they were the first to find biological abnormalities ( I think Julie Gedberding(sp)) was the head of CDC at that time).

          The group was so inclusive as to make the results almost worthless (and I did read through the entire papers). In fact as proof it was not valuable, non of that research has been referenced or followed up by anyone else on the biomedical side in the years since. Their one researcher who actually had interest in investigating us biomedically since then left the CDC.

          I remember when they came up with the Reeves definition which is defining us out of existence (anyone with a chronic headache would qualify).

          I remember when they collaborated with Wessely and Peter White…

          I remember reading through the papers they published on differences in mRNA expression ( hence the references to subsets ).

          I remember when they said we were more likely to suffer from metabolic syndrome, hence confirming my impression they were studying totally the wrong group of people.

          I’ve read their studies over the past years and remember thinking they were worthless as science, and did not advance knowledge of M.E. one bit…

          Compare one of the CDC’s studies to one of ME research UK’s side by side: do they honestly look the same to you?!

          These past two years I’ve been too ill to follow them and if something has suddenly changed I’d been more than happy read in your blog about it and to stand corrected. Are they actually using the Canadian or International Definition? Or even just Fukuda + PEM, these days? –I don’t think so, but I’m willing to be corrected if they have had a “road to damascus” moment.

          • Cort Johnson says:

            They’re not doing metabolic studies anymore. The researchers participating in the Pharmacogenomics projects left to form the core of Dr Klimas NSU team. They have numerous NIH grants to follow up that work on ME/CFS and GWS.

            Yes they collaborated with White, but John! you gotta be fair. They also collaborated with Nancy Klimas, Tony Komaroff, Lucinda Bateman, Benjamin Natelson and Chuck Lapp Now’re they’re collaborating with Dr. Peterson, Susan Levine and Andy Kogelnik. They also funded the Dubbo studies. They also hired Suzanne Vernon who went to bring in many new investigators at the CAA and produce many intriguing studies which ended up getting funded quite well

            They’ve collaborated with a lot more people that you do like than people that you don’t!

            I am not that enamored with much of the CDC’s research program. I agree they could have done better. I am enamored of the multi-site study.

            But John do you realize that your argument for shutting off $5 million of ME/CFS funding a year is that they haven’t done that much great research?

            Is that really a reason to get rid of a program. I say keep the money coming in, publish the multi-site studies and lets what the CDC does in the future.

        • Jim Ellsworth says:

          Is this really the same Cort that started the Phoenix Rising forum, or did someone else borrow his name?

          I’m confused because the Cort that started the forum would not be writing posts that constantly insult other posters.

          If you are going to insult people, maybe you could be a little more subtle? Your current approach isn’t very convincing – you might want to consider a different one.

          • Jennie Spotila says:

            Jim, I refer you to my blog policies. I will not allow a snipefest to break out here. Everyone has had a chance to jab each other. Let’s end it here.

          • Cort Johnson says:

            Sorry Jim this is nitty-gritty stuff. The multi-site project is the kind of heavy duty project that ME/CFS advocates have dreamed about for years.

            Now some of those same advocates are acting like it doesn’t exist.In fact, they don’t care that it exists. They’re more interested in venting their rage at past CDC insults – dating back decades in some instances – than anything else.

            The same advocates that tried so hard to help the community are now in the position, I believe, of doing it considerable harm.

            How do I know that? Because the argument that the CDC should continue, and if it continues, it will benefit the ME/CFS is, after all, not a difficult case to make. It’s an easy case to make.

            I understand that there have been considerable problems in the past. I understand that people are wary. I understand that problems with the website still exist. I also understand that the website has been markedly changed and that the Toolkit, which has upset so many people, has basically disappeared.

            Dr. Unger has made major changes to the CDC. Much of the talk on this thread has simply ignored them.

            This is the CDC examining over the course of five years or so how seven respected ME/CFS doctors diagnose and treat hundreds of ME/CFS patients. Plus a completely pathophysiological focus on ME/CFS involving exercise, immune, gene expression, natural killer cell, gynecological, etc. studies. You can certainly expect more of that in the future. Plus an extensive use of ME/CFS experts to inform their educational materials.

            This is Dr. Peterson stating how important he believes these project are to the future of the ME/CFS community and Dr. Klimas saying likewise.

            When all that doesn’t get through I suggest no one wants to hear it. What they want to hear is how bad the CDC is – who cares that it’s not bad anymore?

            The problem is that the CDC is doing good work now and they are in vanguard of squashing that work. They are doing the ME/CFS naysayers work for them.

            How’s that for a turn???

          • Jennie Spotila says:

            What you said was, “When all that doesn’t get through I suggest no one wants to hear it.” But what I heard was, “The only way someone could disagree with my position is if they were ignoring the facts that I find most persuasive.”

            What you said was, “They are doing the ME/CFS naysayers work for them.” What I heard was, “If someone disagrees with me, they are the same as every detractor who has ever harmed or insulted us.”

  4. weyland says:

    “I want a CDC program that studies my disease, and that recognizes the central features including PEM.”

    That’s the thing, they have never and probably will never study ME. This is reflected in their ICD, on their website, and in their case definitions. They don’t care about ME. They don’t care about ME/CFS. They only care about CFS and care would probably be too strong of a word.

    I agree, let them defund it. Since they aren’t studying ME this will have no impact on the lives of ME patients. All effort at this point should be focused on getting ME out of the ORWH, getting more funding, and getting a valid ME case definition accepted.

  5. I would also love to see James Jones, the Denver pediatrician who was buds with Steve Straus (and is now at CDC conducting physician education!) cut off – But … would that happen? Would the working group get dismissed or farmed out to other projects? Since it’s relatively costless once done, would CDC still make this video available online? [Sidenote – I suspect this is what they intend to do in their education project … so I hope it isn’t funded – but right now it’s on their website for professional points. Ack!]

    http://www.cdc.gov/cfs/education/diagnosis/index.html

    • Cort Johnson says:

      You want to stop the Education Initiative because prior efforts like video’s like these:

      http://www.cdc.gov/cfs/news/features/medscape-case-based.html – using Tony Komaroff, Peter Rowe and Benjamin Natelson

      http://www.cdc.gov/cfs/news/features/cme.html – with Lapp, Komaroff and Batemen

      are so bad?

      With regards to Jones you’re fighting old battles. Jones hasn’t been active at the CDC since 2009. Since Unger took over he’s been a co-author on one innocuous paper – on a pilot registry. If you want to check out who is active at the CDC now search for Unger, Rajeevan MS, Dimulescu I, Murray J, Falkenberg VR and Boneva…

      • The website I posted is the CURRENT educational video. The CURRENT one. If Jones has no influence, his shadow still does. I think I’ll post that again – just click on “launch course”:

        http://www.cdc.gov/cfs/education/diagnosis/index.html

        Mary

        • Cort Johnson says:

          Then please recognize that you’re seeking to end a program based on a shadow! I don’t understand Mary why you – who actually had to move across the country to be near an ME/CFS expert – don’t seem impressed by the fact that the CDC – of all places – is devoting a huge amount of money and time and resources to understanding what the few ME/CFS experts in the country are doing and how they are treating their patients.

          That you of all people would vote to end that project really surprises me. By the time that project is done it will provide information on treatments that only ME/CFS experts are using. If you want immune monitoring to enter the diagnostic protocols for ME/CFS this is quickest way to do that I can think of…

          I would keep the CDC program going simply to keep that project going.

          • I’m not campaigning against the large study. I’m not even campaigning against funding CDC’s CFS program. I’m just saying that I’m NOT going to lift a FINGER to KEEP the CDC’s CFS program.

            There is a chance that the loss in funds would result in closing down the larger study, but I don’t think so. I think it’s more likely that it will shut down the contracting out of the education initiative. And I will admit that (as long as the inclusion of the Atlanta data set doesn’t mess everything up) the large data set study is important. So there’s a risk. But you know something? CDC’s not really spending that much money on it.

            There was a time when hearing that CDC was being threatened with denying CFS funding – I would have jumped up and written letters. I would have been outraged. Now, my response is … eh. After more thought it was – wow, that would be cool!

            At some point they have got to stop adding to what is ON the website, take it down, and write an entirely new one. The same goes for the material they send out to physicians, reporters, and government types who request information (they still send out the toolkit, BTW). It’s like they had their arms twisted behind them to add a link to the IOM report – and then left everything the way it was everywhere else on the website.

            I am disappointed. I had hopes for Beth Unger. I was enormously disappointed when she hissed that CBT and GET were backed up by serious research and leaving that recommendation on the CDC website was a non-negotiable issue.

            But then, I am also backing off. Something clicked the day I listened to a representative of the US health agencies chirp cheerfully in reference to a process of deciding how to fund our disease as “the JURY method – the American way” [the P2P] – I had to walk out of the room. Not even lip service to the scientific method – which a lot of those people couldn’t find with both hands anyway. It is too depressing. Too sad.

            As always, I’ll hope it changes. But I’m not using any more energy on it. CDC is not going to change until they have to. And that’s not going to be until there’s more real scientific research, and real scientific research does not happen at CDC. Not that I’ve seen, at least.

            I do ask YOU, however, how is it that this is housed within pathogens – that Belay is a virologist – and the one thing that they WON’T consider is all the evidence on pathogens? They don’t pay much attention at all to immune system problems (except to suggest that because there are more women than men, maybe it’s autoimmune – which is like hearing a fingernail going down a blackboard to me). These people talk about things for which they are entirely unqualified. It makes no sense. On the surface.

            But, too repeat – don’t worry, I’m not campaigning AGAINST the CDC. I’m just not campaigning FOR it.

  6. Cort Johnson says:

    I disagree with much of this blog. While there are still significant problems I find much encouraging in the CDC’s shift since Dr. Unger took over, and I think the program may contribute significantly to our understanding of ME/CFS in the years ahead.

    Let’s take the multi-site study, the positive aspects of which were not recounted. The study also got the ME/CFS experts to use standardized testing and clinical intake procedures to ensure that the patients were finally studied in the same way.

    That study provides the first in-depth look at patients seen by ME/CFS experts. It will surely assist with a better definition, with an understanding of which treatments work in which patients, with what kinds of illnesses are present before and after ME/CFS, what kinds of illnesses are present in their families, what kinds the subsets are present in this disease and better ways to measure symptoms. Plus they will follow the patients over several to help determine the disease course. In short this study is helping this field grow up.

    The second stage of the study is incorporating large numbers of seriously ill patients that have never been seen in studies, and pediatric patients that rarely seen, it includes the largest maximal exercise study ever done in ME/CFS. That study should validate findings that exercise significantly impairs cognition. It also includes a large gene expression study which will hopefully highlight the complement genes found in earlier studies and their genes the Lights found up and down regulated in their striking studies. The exercise study will also measure lactate – possibly indication mitochondrial dysfunction – before during and after exercise. Positive results from any of these aspects will go FAR to legitimizing this disease and the effects that exercise has no people who have it.

    The post also ignores the striking gynecological studies from the CDC that have found extremely high rates of gynecological disorders, the natural killer cell studies seeking to get at the source of the NK cell proble, several studies that found complement activation during exercise and alterations in complement genes that mayhelp explain the exercise problems, the finding of shortened telomere length suggesting ME/CFS patients are aging more rapidly than normal….and I’m sure other studies I can’t recall.

    That would be all thrown away because

    (a) the CDC does not put a “black box” on warnings about exercise – but it does warn that exercise should be started a very slow rate and if it causes more symptoms it should be stopped. It’s simply not accurate, as well, that the CDC does not recognize that exercise can harmful – that’s tabloid advocacy that is not worthy of this blog. Why would they be doing a large exercise study if they didn’t think exercise was causing biological problems in ME/CFS? Why have they continued to expand on the complement findings in their first exercise if they didn’t think exercise was affecting the immune system? Why would they be examining the effect of exercise on cognition if they didn’t think it affected that? Or on lactate levels if they didn’t suspect there was a problem with the mitochondria?

    (b) because the CDC has made no public statement about adopting the IOM report. I imagine that statement will come when the federal government decides whether to adopt the diagnostic criteria and name. The CDC did declare the toolkit was essentially obsolete – after the IOM report came out. That was not noted in this post.

    (c) because of a CDC education program that uses the word “CFS”. This is reminscent – with less basis – of the fears sparked by the production of IOM and P2P projects. The CDC actually has a long history of using ME/CFS experts such as Dr. Bateman and Dr. Lapp to inform their educational projects. They have produced several video’s and training programs -the content of which was produced by ME/CFS experts.

    Discounting that project because they’re using the wrong term to call this disease is penny-pinching in the inth degree in my opinion. It’s highlighting style over substance and is an overwrought reaction to a small issue in my opinion.

    The CDC is looking at your disease. They’re putting hundreds of patients under the microscope in the multisite studies. Simply by including the largest exercise study that has ever been done in the multisite study they acknowledge PEM exists. Their recent studies have been using stressors to flush out the PEM element in ME/CFS.

    Their studies will likely help to cement the understanding that PEM is a central part of ME/CFS. I think if you look more at the actual work the CDC is doing and less at Dr. Unger’s occasional utterances your worries about their understanding of PEM will diminish.

    Yes, the program has its faults and needs work. The Empirical Definition needs to be replaced and it surely will be. (Studies using the ED by the way are not getting results that are untypical in ME/CFS: they make sense with what research has shown.)It’s too bad they’re not doing the two-day exercise study. I would like it if Dr. Unger would publicly proclaim PEM to be the key symptom in this disorder. I would be shocked if the CDC did not immediately endorse whatever decision is made on the IOM report recommendations. I assume that she is not speaking publicly on them in deference to the work underway to determine what will be done with them.

    Of all the ME/CFS programs I perhaps expect less of the CDC than the others but I am gratified at the shift the program has taken since Dr. Unger took over. As someone who watches the research closely I couldn’t agree less with the sentiments of this blog.

    • Jennie Spotila says:

      I will address your substantive arguments in a separate comment, but I did want to respond what you said about me personally.

      You said that I am engaging in “tabloid advocacy” and an “overwrought reaction.” I object to these characterizations. I do not sensationalize information on my blog or in my advocacy. I do not fabricate conspiracies or misinformation. I research and document my posts to the limits of my capacity (and frequently beyond those limits). I make a conscious effort to keep my emotions out of it.

      We disagree, and that’s fine. But it’s no excuse to take potshots at the quality of my work.

      • Cort Johnson says:

        My tabloid advocacy – which I regret and apologize for 🙂 – was done in the heat of the moment. It referred to this one sentence –
        the CDC “refuses to acknowledge that exercise can be harmful to people with ME/CFS”..

        That statement is not even close to being accurate. It’s certain to inflame people who aren’t willing to look at the CDC’s website or their work. I don’t believe a statement like that belongs in this piece.

        I certainly wouldn’t characterize the rest of the blog that way or any of the work you do and I apologize if it seemed I meant it in that way.

        There is gulf between what you consider important and what I consider important. Putting the multisite study up against the story project and their education initiative whatever that is is reflective of that. For me the multisite study is far, far more important that the story project.

        Focusing on the use of the term “CFS” is another instance of that. Being upset that Unger has not publicly endorsed PEM as the key symptom of ME/CFS is another. That Unger has not publicly endorsed the IOM document is another. The fact that P2P panel didn’t get all the comments was another issue that I placed much less of a priority on than you did. We share some priorities and not others.

        For me issues like this miss the forest for the trees. With regards to the overwrought statement – I regret using that loaded word. I would have rather in retrospect used another one. It reflects what is for me a focus sometimes on what I regard as less important matters.

        I also couldn’t believe you would be happy to let the CDC program disappear! I haven’t been this tweaked by a blog in a long time. I’m still shocked! :). My apologies for using those loaded words, though.

        • Jennie Spotila says:

          Thank you for the apology, Cort. I appreciate it.

          From your comment, it seems like what is really “tweaking” (your word) you about this blog and my advocacy is that we do not agree. I make different value judgements than you; I prioritize issues you don’t think are important. I’m not sure why that bothers you so much, though.

          I do focus on the forest, not the trees, or at least I try. I don’t look at individual data points, like what name CDC uses, and decide if I agree or not in isolation. I look at the individual data points and try to figure out how the pieces all fit together. What does the forest look like, and what does that mean for us?

          I find it curious that you believe NIH should take note of the new quality of life study and change their approach, but you do not expect CDC to do the same. Each agency spends about the same amount of money on ME/CFS – a bit above $5 million. In fact, it would be easy to make the argument that it is MORE important for CDC to reorient around that quality of life data, given its role in medical and public health education.

          • Cort Johnson says:

            Thanks for your understanding :)..

            Everyone has their own viewpoint that’s for sure. I guess it would be a dull world if that wasn’t true.

            I do agree that the QOL studies should prompt the CDC and the NIH and everyone we can think of to spend more on ME/CFS.

            Like you I’ve been more focused on the NIH.

  7. Simon McGrath says:

    Um, this seems like the perfect being the enemy of the good…

    Sure, CDC use CFS but the multi-clinic study, which has more good points than bad, uses the US’s top mecf clinicians. Why would anyone want to stop that?

    Not to mention the CDC pulling it’s previous CFS toolkit being a very positive step forward. Much like the IOM report and NIH/P2P report were written off but, while far from perfect, generally advanced our cause (more weapons to use to call for more funding and better research).

    I wish we could focus more effort on positive campaigns for what we do want (much more money for biomedical research!) rather than fighting stuff that isn’t ideal but could be helpful.

    I’d be more persuaded it’s worth opposing this if a load of mecfs researchers and clinicians come out and support stopping CDC funding for its “CFS” programme.

    I actually think we all want the same thing in the end, but this is a disagreement over the most effective methods.

    And I do admire many of your blogs, Jennie. Just not this one.

    • Jennie Spotila says:

      I don’t mind disagreement, Simon! And as I said in response to Joe, I am spending my advocacy capacity on getting more funding from NIH. I will not actively advocate to “save” the CDC CFS program, nor will I spend energy trying to kill it.

      I do not expect perfect, and I acknowledged in my post that there were positive things about the multisite study. But when I balance the value of that study against the medical education efforts and this FedBizOpps notice, I come up short. I do not think the multisite study is so fabulous that we should forgive all the problems of the education efforts.

    • At first the multi-site study was good – but perhaps nobody else noticed about a year ago Beth Unger saying there just weren’t enough patients and she was going to start including the Atlanta study cohort.

      The CDC’s Atlanta study is the only one I know of that used Reeves’ questionnaires to diagnose patients – and those questionnaires are basically a copy of Simon Wessely’s (seriously). Both the questionnaires and the Atlanta cohort should have been buried a long time ago.

      And – I don’t know quite how to say this – but too much goes on at CDC that has to do with getting outside funding, and maneuvering for who gets the funding and who doesn’t, and what hoops they have to jump through to get it.

      • Cort Johnson says:

        I don’t think you’re quite up on the multi-site study, Mary. The second phase is greatly enlarged. It will include severely ill and pediatric patients. It will dig deeper into treatment. It will include an exercise study (gene expression, lactate and cognition). It will also include a cortisol study.

        I can tell you that Dr. Peterson loves these studies. He appreciates what the CDC is doing. He tries to include Dr. Unger in what Simmaron is doing because he thinks she is listening. Yes, there are flaws but as Simon noted letting the perfect be the enemy of the good is not a great idea in a field with so little money devoted to it.

        There’s some more information on the study on the Simmaron website – http://simmaronresearch.com/2014/11/going-grassroots-dr-unger-cdcs-chronic-fatigue-syndrome-multisite-studies/

    • Still have CBT and GET – just a little more sophisticated about it. Still ignore the aspects that I think define the disease as I have it – immune dysfunction and chronically activated viruses. See:

      http://www.cdc.gov/cfs/management/index.html

  8. Anne Ö says:

    Thank you, Jennie.

    I’m wondering about the implications of this.

    If the funding is cut, would that mean that the CFS information on the CDC website would be taken down? Or would it just be frozen in this less-than-perfect state? (In the latter case, maybe a decision to stop the CFS program would not be so great.)

    Do we know if cutting the funding would stop the new “education initiative”?

    (I realize we probably don’t have the answers to this…)

    • Cort Johnson says:

      But why would we want to stop the Education Initiative? The CDC is plugged in big-time to ME/CFS experts and that’s where they’re going to get their patient stories from. (Where else would they get them from?) Plus they have a large severely ill patient study going and a pediatric patient study going. They’re going to have great stories to access.

      Plus in their past education efforts they’ve always used ME/CFS experts like Komaroff, Bateman, Lapp and Natelson. This is not the CDC of old.

      • Janelle says:

        Those people appeared in the videos, but it never appeared to me that they got to say what they wanted to say. I always figured they followed a CDC script rather precisely. Of the materials I’ve been able to watch, the disease description was watered-down CDC version. Fatigued, with some other mostly-vague symptoms like headache, aches, cognitive problems, problems sleeping, maybe sore throat or PEM…. doesn’t really sound very much like what I have (yes, I have all that stuff but what they focus on is nothing I would say was the Main Thing).

        I see a few changes for the better, but not enough to convince me that CDC is the proper home for my disease. They still are saying severe patients should do hand grasping exercises, which is entirely inappropriate. Severe patients have more urgent uses for energy. And talking like patients in general can necessarily increase how much they can do through a graded exercise program, which is wishful thinking at best.

        I don’t have a problem with mentioning the removed funding in my letter (seriously, who does that? just poof, with no other plan in evidence?), but my main focus is on: NIH needs to take responsibility, and increased funding should go there.

    • Jennie Spotila says:

      We do not know if cutting the funding would result in taking down the website or preventing the new education initiative. Remember that even if the final report recommends cutting funding, CDC can still spend the money. The committee report is a suggestion to CDC. They are not bound by it.

      • Suzanne D Vernon says:

        If there is no money appropriated for fiscal year 2016 for ME/CFS research it is unlikely that programs could continue (beyond current funding). To do so the Chronic Viral Diseases Branch would have to use dollars from other programs for ME/CFS research.

        Please remember that the CDC has generated some of the biggest of BIG DATA over the years with your tax dollars. In addition to education supporting research via contracts with experts (the multi site study), CDC should annotate all of this data and deposit it for archive and use to the National Center for Biotechnology Information (NCBI) of the National Library of Medicine, National Institutes of Health.

        • Craig Maupin says:

          Though “the biggest of BIG DATA” certainly sounds, well, big; the vital ingredient needed to reestablish shattered public confidence in the CDC CFS program is, and always has been, clinical accuracy.

          Attributions of researchers within a government program during a program’s formative years — f0r instance, that a disease is a”stress disorder” whose main physiology falls within the HPA axis– could quickly skew data. “Big” bombs without accurate sights is still a failed bombing run.

          • Cort Johnson says:

            I think the multi-site program should fulfill your criteria of “clinical accuracy”.

          • Jim Ellsworth says:

            Hey Craig!

            It’s great to see you here. I am a huge fan of your work, especially the Straus letter. It is absolutely required reading for anyone interested in the political history of this illness.

            http://www.cfidsreport.com/News/14_Chronic_Fatigue_Syndrome_Definition_IOM_Straus.html

            (with all the advocates who have come out of the woodwork to respond, it feels like I’ve stumbled into Old Home Week 😉

          • Cort Johnson says:

            You know what would be really nice, Jim? If all the “old advocates” actually got caught up with what is going on instead of fighting old battles that no longer exist.

            The CDC is not studying “stress”, allostatic stress, personality disorders, etc. anymore. It no longer lists CBT in it’s treatment section. Dr. Unger stopped all that.

            You guys need to get over that – You’re not helping. You’re part of the problem now.
            You need to be able to recognize and reward good work instead of running all these old tapes.

            This is not the same program you advocated against. It’s more the kind of program you advocated for.

            They’re going to ME/CFS experts practices and studying that. Unless you think Dr. Peterson – who just put out a statement supporting the CDC effort – and Dr. Klimas – who did earlier – are idiots – I suggest you get on board.

            The CDC s also studying NK cell functioning, immune responses during exercise, gynecological problems, epigenetic, telomeres, the effects of exercise on gene expression, lactate, and cognition.

            I have yet to see anyone complain about the CDC’s research topics since Dr. Unger took over.

          • Jennie Spotila says:

            Cort, I just posted a blanket reminder to everyone about my Blog Policies. You’ve argued hard and vigorously, and I have no problem with that. Please don’t cross the line into personal attacks, telling people they’re part of the problem, etc.

            http://occupyme.net/comment-policies/

          • Thanks for that citation – for some reason I had not seen it (maybe because of everything going on in my life for the past two years …). Straus was unfortunately so pivotal in the direction things took with this illness.

            But if we are going to talk outright corruption, it’s hard to forget that CDC went out of their way to hire consultants who were all British psychiatrists working for multinational insurance companies on the side (Simon Wessely, Peter White, Michael Sharpe, Trudie Chalder) and had a horrendous theory as to how this disease worked.

          • Jim Ellsworth says:

            Cort wrote:

            “You know what would be really nice, Jim? If all the “old advocates” actually got caught up with what is going on instead of fighting old battles that no longer exist. ”

            Old battles? Really?

            When NIH has changed their policies and increased research funding to an appropriate level, then *maybe* we can talk about “old battles”.

            I’ve spent a lot of time studying Uncle Sam’s many crimes. A very common theme is “that happened a loooonnng time ago, so it doesn’t matter any more.” Well it *does* matter, since the policies established twenty years ago are still in effect, and they are still contributing to patient death and suffering.

          • Craig Maupin says:

            Jim: Thank you. Truly.

            Cort: I appreciate the discussion, and I know you work very hard. Though we may disagree, I will listen and consider all thoughts and ideas.

            Several points:

            –Though the multi-site study may include researchers who have a distinct clinical picture of the disease, I would not describe the range of clinics as having a consistent approach.

            –Restoring public confidence in researchers involved in the CDC’s past CFS program would be helped greatly by clear verbal and public disassociation from past efforts to promote CFS as a stress disorder. The past efforts affect program credibility today, clinical care of patients today, and research efforts today. The effects of efforts to change public beliefs about any disease don’t end when they began.

            —Jennie, Mary, and others emphasized the current situation and current risk potential, particularly in regard to possible outcomes.

            — Congress’ role in managing agencies seems to be smaller with each passing year. As of 2010, Congress limited its own authority to direct medical research to soft earmarks (suggestions). If the CDC wants to demonstrate they care about this disease, they could choose to work a Congressional staffers poorly educated decision in their favor.

            In my recollection, Ms. Spotila has expressed concerns in the past about rejecting upgrades to our position simply out of a habitual reaction, bitterness, or weariness– it has been a common theme with which I concur. But given the unique problems surrounding this disease, it is a mistake to quickly label concerns about unspecified requests for more funding as emotive or historically-based bitter pill, rather than a thoughtful analysis.

          • Erik Johnson says:

            And Craig, as you know, the CDC ALWAYS manages to miss its target… somehow.

          • Cort Johnson says:

            Only Eric – who has the answer to ME/CFS – is always on target 🙂

        • Matina says:

          Thanks suzanne for your comments.

  9. Mary Dimmock says:

    Much of what has been said in support is based on what CDC is doing with the multi-site study. But CDC’s budget also goes for medical education and there’s broad consensus within both the community and at CFSAC that CDC’s medical education efforts have not been good and have hurt patients. We have all seen the impact in miseducated doctors and misguided treatment recommendations that harm patients, especially new patients who still trust doctors recommendations.

    CFSAC and patient advocates have made many, many recommendations to CDC to change its web site because of this. Yes, CDC removed its toolkit after the IOM report came out. But only after having refused to pull it when CFSAC and the patient community called for it to be removed and only after rejecting CFSAC’s request to have input into CDC’s effort on a new version. However, CDC still has a page up there about a history of child abuse being a risk factor for the disease – based on an Empirical study that the IOM report rejected as flawed. It still recommends CBT even though a recommendation for CBT is based on Oxford studies. PEM is still an optional symptom with insufficient explanation of its diagnostic and treatment implications.

    Compare CDC’s medical education to either of the primers and the difference is stark.

    When the AHRQ evidence review protocol was published, I asked the question “What disease are we talking about?” Lack of clarity on that question led to a muddled Evidence Review that ignored fundamental differences in definitions and ended up with treatment conclusions indiscriminately and inappropriately applied across definitions and types of patients.

    I’d ask the same question here – what disease is CDC targeting? Is the intent to run a public awareness campaign about Fukuda CFS? Or is the intent to run a public awareness campaign about the neuroimmune disease that is characterized by PEM and cognitive dysfunction?

    This Biz Ops announcement uses a description of the disease that could have been written for the last public awareness campaign in 2006.

    We face a huge uphill battle to get the public and a dismissive medical community to understand this disease. Winning this battle will require concise communication on the nature of this neuroimmune disease with its hallmark PEM. It will require explicit statements that this disease is distinct and separate from the umbrella Fukuda-based CFS that CDC has embraced and taught to date. And it will require explicit statements that findings based on Oxford and Empirical studies are not to be applied to this disease.

    But this announcement is about Fukuda CFS.

    If CDC cannot produce a Biz Ops announcement that is clear about the nature of the disease, then how can CDC produce a public awareness campaign that can effectively explain the disease?

    Two other points…
    CDC doesn’t have a great track record of accepting input from CFSAC, disease experts and patients on the problems with its medical education. So far, this announcement does not dispel that concern.

    On the recent CDC gynecological study that you mentioned – Interesting perhaps but this is an empirical definition study so we don’t really know the relevance of these findings to ME patients. I’d ask why Empirical definition studies are still being published 7 years after the definition was discredited. It’s only further muddying the waters, particularly when the same disease label continues to be used for disparate definitions that have been shown to represent different disease populations.

    • Cort Johnson says:

      Of course the Education Initiative is focused on Fukuda. How could it not be? The Fukuda definition has been the only definition used in research and other studies for decades. The CDC, of all places, is not going to publicly advance another definition. That’s just asking too much. More importantly what does it matter with regards to the story project? They’re probably going to go to the ME/CFS experts to get their patient stories.

      Asking the CDC to trash the Fukuda definition before the DHHS has made its decision on the IOM report is just backwards. The definition is going to change and the CDC is going follow it. How can they not? Taking $5 million dollars out of the puny ME/CFS budget because the CDC is still using Fukuda – as are almost all research studies – is….extremely short-sighted.

      I submit that the CDC has made many changes to its website and as I noted in my other comments, whatever the consensus in the community is, it has used ME/CFS experts to produce its education See my other comments where I posted what’s on the website.

      I don’t believe the definition is the only factor or even the major factor to be assessed in looking at a programs worth. The definition is evolving – rapidly. Lenny Jason is bringing out statistical analyses of definitions and core symptoms at a rapid clip. The CDC must follow those but there is still no consensus on what definition to use right now. Until then they’re using Fukuda – via which abnormalities in many systems have been found. That makes sense for this organization and it’s probably better than using the CCC and getting a patient group rich in psychiatric diagnoses into studies.

      The definition issue could be resolved to everyone’s at least somewhat 🙂 satisfaction in months.

      Even with the ED the CDC’s studies have largely found what we expect in ME/CFS. Yes, it’s not good enough but it hasn’t lead us down some weird, behaviorist path.

      • weyland says:

        I’m curious why you’re so confident that the CDC will adopt the IOM criteria. We still don’t even know if the HHS will accept the report. It’s a completely unvalidated and untested criteria and is entirely inappropriate for research use.

        I’m very confused. Are you implying that the CCC criteria selects patients with psychiatric illness? Psychiatric disorders are an exclusionary condition in the CCC. The CCC was used, apparently quite successfully, to select patients for the recent Hornig/Lipkin studies.

        • Cort Johnson says:

          Yes, Jason’s own studies have shown that when you require too many symptoms for a diagnosis – when you go from four, say, to eight (CCC)– the number of people with psychiatric diagnoses goes way up. You still get an ME/CFS set but you get a set of ME/CFS patients with more – probably a lot more -psychiatric diagnoses. That problem is why the initial CFS criteria – the Holmes criteria – was modified into the Fukuda criteria.

          What I’m confident is that the CDC will follow the lead of the HHS in this. I don’t know what the HHS will do. I believe the CDC contributed, by the way, to the funding of the IOM report. They’re invested in its outcome.

    • weyland says:

      “When the AHRQ evidence review protocol was published, I asked the question “What disease are we talking about?””

      A very important question indeed. We can more or less answer it ourselves. They purposefully cut off the literature search at 1988 to coincide with the creation of the first CFS criteria. This avoided including any “pure” ME literature in their review.

  10. Cort Johnson says:

    I must say this blog really got me going!

    This is what the CDC now says about CBT:

    CBT is often prescribed to help patients with chronic illness cope better with illness and develop strategies that relieve the symptoms of their illness. It has been successful in helping patients with cardiovascular disease, diabetes, and cancer.

    For CFS patients, CBT can be useful by helping them pace themselves and avoid the push-crash cycle in which a person does too much, crashes, rests, starts to feel a little better, and then does too much once again. Often, CBT is prescribed along with other therapies to help CFS patients manage activity levels, stress, and symptoms.

    CBT can help CFS patients better adapt to the impact of CFS and improve their ability to function and their quality of life.

    Is that really so bad?

    I would never got to the CDC page for treatment. (They know put their treatment section in the “management” section, but it’s not just CBT and in fact CBT is not in their Treatment section – it’s in their Improving Health and Quality of Life section. In their treatment section they do mention sleep medications, stimulants for cognitive problems, they advise caution in using antidepressants, they note that treating depression is not a cure for ME/CFS, they mention drugs and other ways to ease orthostatic intolerance.

    I imagine that their experience with experts in the multi-site study is going to change this section dramatically….

  11. Mary Dimmock says:

    Regarding CBT, the CDC “Diagnosis and Management” CME also says:

    “The goal of CBT is to help the patient understand their illness and to change perceptions, beliefs and behaviors that can contribute to the impact of symptoms. ”
    and
    “CBT is associated with significant improvement and possible full recovery from some symptoms of the syndrome. Acceptance of both the illness and particular modes of therapy positively impacted the outcome.”

    The references provided in the CME on this include studies by White, Chalder, Wessely and other proponents of the “fear avoidance” and deconditioning model. If doctors were to actually use those references, they would get an erroneous view of the disease.

    And that’s the point… we have a muddled mess of information about this disease that has been created by applying studies in overly broad CFS definitions and the ambiguous use of terminology. No wonder doctors are confused. IMO, we wont dig out of the mess unless future medical education and awareness campaigns are crystal clear about these issues.

    With hindsight, there’s probably a lesson here in how the IOM criteria were received by too many in the medical community – i.e. “new name for the same old disease” that is not serious, or maybe malingering, a somatic symptom disorder or deconditioning, treatable with CBT and GET. Perhaps if the IOM communications had been more explicitly emphasized that the intent was to pull this disease out of the broader Fukuda/Oxford/CFS umbrella, these doctors might not have seen it as just a simple name change

    The Biz Ops announcement was a missed opportunity to provide that clarity and raises red flags at the intent of the campaign that CDC needs to address. Its not to much to ask what disease this campaign will target and whether it really is going to target the broader CFS.

    • Jennie Spotila says:

      The competing quotes from Cort’s comments and Mary’s actually highlights one of the major problems. The CDC website differs from the Medscape CME content. CDC has endorsed CBT as a treatment that can contribute to possible full recovery in the CME, but uses much more palatable language about it on the website. That’s just one example of the muddled information Mary is referencing.

    • Cort Johnson says:

      Let’s take this statement:

      “The goal of CBT is to help the patient understand their illness and to change perceptions, beliefs and behaviors that can contribute to the impact of symptoms.

      Is this really so bad? I would change the “understand their illness” part – that’s a bit over the top – but changing perceptions, beliefs and behaviors that can contribute to impact of the symptoms (not create symptoms but contribute to the impact of them) – just what is so horrible about that? That could apply to anyone with any chronic illness. We can’t allow that that might happen to somebody with this disease. (This disease that impacts quality of life and functionality to a greater extent than any other disorder?)

      Anyone with a chronic illness is subject to getting depressed, anxious, angry, frustrated or prone to ruminating about how bad it is, how it sucks that life turned out this way, etc. How can that not happen at least to some extent? It’s not easy to avoid that stuff.

      • Cort, quit while you’re ahead. The best argument for caring about CDC’s funding is the multi-site study. The worst argument is defending CBT. Especially by pretending it’s something it’s not.

        The CDC’s endorsement of CBT is in the context of Peter White chairing the 2009 committee on CDC’s 5-year-plan for CFS. They even had a hard link to his psychiatric clinic at St. Bart’s in London. CBT in the context of Peter White means cognitive behaviour therapy to teach the patient to let go of her “inappropriate illness beliefs” – it rests on the theory that the patient perhaps was sick at first (hence post-viral disease syndrome is considered a synonym), but while she (always a “she”) got better, she was afraid to return to previous activities because she was afraid of getting worse.

        Because she is afraid, she does not exercise. That’s why you see the two together – CBT/GET – the cognitive behaviour therapy where you teach her to let go of her fear of activity is combined with graded exercise.

        Peter White is a psychiatrist at St. Bartholomew’s in London. Why use his work instead of, say, Dan Peterson, or Peter Rowe, or David Bell, or Paul Cheney, or … well, lots of people – when putting together a website? Well, Peter White was also at the time Chief Medical Officer for Scottish Provident insurance company and denied people disability because they did not complete a ten-week course of each, CBT and GET. He now holds a similar position with the giant multinational company that ate Scottish Provident, Swiss RE.

        Okay, KNOWING that, we go back to CDC recommending CBT and GET. That recommendation gets used as an excuse to put kids in foster care because their parents are encouraging their false illness beliefs and keeping them in wheelchairs or at home.

        I would not defend it. That makes me back up and remember why I don’t trust either CDC or anybody who tries to pretty up CBT/GET – which is quite ugly internationally – it is the reason Karina Hansen is effectively isolated in prison – actually a psychiatric hospital – for having “persistent refusal syndrome” and “factitious illness”. It is the reason a lot of the severe ME patients are severely ill.

        That makes me wonder why CDC would defend it. Especially why people who call themselves virologists and epidemiologists would be so enthusiastic for it – they ain’t psychiatrists.

        So – that’s not a good argument.

        The best argument is the multi-site study. And I am relieved that they have included a variable so they KNOW which site the data came from – which will keep the Atlanta data from polluting the other information.

        • Cort Johnson says:

          🙂

          Noted…

          What I’m saying or trying to say is that the CDC has a very moderate stance on CBT/GET. They’re not even including it in their treatment section anymore. It’s not a reason to let the CDC CFS program expire.

          Programs evolve. I think this program is and will evolve and we’ll see what comes out of the multi-site study.

      • weyland says:

        This is the rationale for CBT use in CFS, straight from PD White and friends:

        “CBT was done on the basis of the fear avoidance theory of chronic fatigue syndrome. This theory regards chronic fatigue syndrome as being reversible and that cognitive responses (fear of engaging in activity) and behavioural responses (avoidance of activity) are linked and interact with physiological processes to perpetuate fatigue. The aim of treatment was to change the behavioural and cognitive factors assumed to be responsible for perpetuation of the participant’s symptoms and disability. Therapeutic strategies guided participants to address unhelpful cognitions, including fears about symptoms or activity by testing them in behavioural experiments. These experiments consisted of establishing a baseline of activity and rest and a regular sleep pattern, and then making collaboratively planned gradual increases in both physical and mental activity.”

        Any reference made to their work is a tacit acceptance of their premise.

  12. Jennie Spotila says:

    I acknowledged in this post that the multisite study is a valuable epidemiological study, is a source of revenue to the seven contracted sites, and that it produced data used by the IOM committee. But the study is not without flaws. It will incorporate an exercise challenge, but only one day instead of the two days that captures the unique decline in metabolic function. And that exercise challenge will be followed by a cognitive test, but we don’t have enough information to predict if it will produce valuable data.

    Many of the comments on this blog post are predictive: the multisite data “should” or “will” or is “expected” to produce valuable data on various topics. The education campaign “will” feature people with ME/CFS and tell their stories in the ways we would like to see. The CDC “will” immediately adopt a new definition when HHS makes up its mind. And so on.

    I am very cautious about making assumptions like this, and that approach is based on our history. Most advocates, myself included, expected NIH’s State of the Knowledge meeting in 2011 to be followed by an RFA. Dr. Francis Collins attended the summary session of that meeting in person! Surely that was a signal that an RFA was on its way. We were wrong. And this is just one example of advocacy expectations that were not fulfilled.

    I’ve said this several times now, but I am not going to spend my advocacy energy trying to kill the CDC program, nor will I spend energy trying to save it. When I weigh the value (and hoped-for value) of the multisite study against the education campaigns (past and future), I come up short. I do not think the multisite study is so wonderful that I can forgive all of the other missteps. I expected a lot of push back on this analysis.

    I have no problem with Dr. Beth Unger. In my personal interactions with her on the FDA working group, I have found her to be open-minded and curious. I do not question her motives, but I disagree some of CDC’s views about this disease.

    CDC can and should do better. If CDC announces at the CFSAC meeting that it will pull us out of the “chronic fatigue” umbrella category, that it will adopt a definition that requires PEM, that it will overhaul its medical and public education efforts to use consistent and accurate messaging – then I will throw my support behind funding the program.

    Again, I note that the Senate committee report is not binding on CDC. They can continue the program if they wish, and there is a big gap between the level of funding recommended by the House and by the Senate – and that gap has to be reconciled by Congress before anything goes to the President.

    Based on what I’ve seen, and based on what is happening right now, I will not invest energy in saving the program. I need more of a reason than the hope that the multisite study will turn out to be a data bonanza that will lead CDC to improve its efforts.

    • Cort Johnson says:

      I just think you’re going to be disappointed if you expect Dr. Unger to be ahead of anybody on the definition issue or on PEM. She’s going to wait – I’ll bet – on the DHHS to make their decision. Dr. Unger does, however, value statistical analyses and studies. With Jason’s studies highlighting PEM and other symptoms at every turn, there’s no reason not to expect her to accept and ultimately findings tied to his studies.

      I too was very disappointed by the lack of an RFA following the SOK meeting. We do have some history with educational initiatives with the CDC and the recent history has been very good. You’re right that we don’t know what the multisite studes will bring – let’s just say that the studies have real promise.

      But I assert you are asking too much for your support. The CDC is already doing good work with its education programs. It’s already employing ME/CFS experts. Now they are willing to spend money to get ME/CFS stories out. In my opinion they should get a big pat on the back for that.

      Yes there is apparently some probably minor miss – messaging (however you write that :)) – but there will always be some of that in programs produced by different people and at different times. The key is whether the thrust of the programs is correct. I haven’t seen them in a long time but I thought they were conservative but good programs at the time and I’m sure I still would.

      I like consistent messaging but I wouldn’t spend the time to overhaul them and I wouldn’t base my support for them based on whether they were overhauled or not. That to me is the perfect being the enemy of the good.

      I still strongly disagree with your stance on this. Dr. Unger is leading in the right direction. She does have a $5 million dollar budget. Besides the multisite program she has recently funded work on gynecological disorders in ME/CFS, the cause of NK cell dysfunction, work on complement problems in ME/CFS, the telomere study (not published yet). She is incorporating exercise and stressors into her studies. Someone also reported that the CDC is working on a cheaper and more accessible NK functioning test. She has shown the willingness to interact with all aspects of the ME/CFS community.

      I’m not saying the CDC program has produced wonders – it hasn’t — but the promise is there. We need all the research we can get. I would fight very hard for this program. I think of it as I do CFSAC – CFSAC did little for a long time – but then it was the impetus behind the IOM report and apparently the P2P report. The CDC program could play a major role for us in the future.

      • Jim Ellsworth says:

        “The CDC is already doing good work with its education programs.”

        The proof is in the pudding, not on the website.

        I’ve been sick for twelve years. I have yet to meet a single clinician in the entire state of Maine that knows anything at all about this illness and how to treat it. I don’t expect that to change before the disease finally kills me, or I just can’t take it any more.

        • Cort Johnson says:

          So you’re against good programs because they haven’t made a difference in physicians in Maine?

          Given them enough money and make sure every doctor and I guarantee they will make a difference in Maine. Don’t give them any money (the current situation) and they obviously aren’t going to make it out to Maine.

          Good programs – poor distribution – I’m not sure what you’re arguing against – the unwillingness of the CDC brass to fund them better?

  13. Waiting says:

    “CDC refuses to admit that PEM is a distinguishing feature of the disease…”

    I think this is key.

    Is “distinguishing” the same as saying “unique”? Do we all consider it unique or merely one of a few distinguishing features? The particular PEM measured by the Stevens’ Protocol is, as far as I am aware, unique to ME to date. (I’m not excluding the possibility there might be other subtypes of PEM — so I don’t think patients who clinically look like ME/SEID — but do not fail the 2-day CPET (or cannot physically undergo the 2-day CPET) should be excluded from study & treatment).

    It’s concerning that they deny this key, very basic fact. And deliberately failing to conduct a 2-day CPET in their exercise study (even if they only included it for some, but not all patents) is a huge problem. If they’re placing (correctly) such an emphasis on studying post-exertion effects, why on earth would they not include the gold standard method of objectively measuring PEM (Stevens’ Protocol)?

    Does this failure point to a bias?

    Unrelated to the CDC but on the same topic as PEM (as measured by 2-day CPET=unique), I was surprised to hear Dr. Lily Chu say on the recent SOLVECFS webinar that in her opinion, PEM was not unique to ME. I don’t know if she is thinking of a larger-encompassing PEM definition or the 2-day CPET kind.

    • You cannot continue to support graded exercise (which is all over CDC’s website, sometimes disguised with a different name but often using the actual phrase “graded exercise therapy”) if you acknowledge the research on the 2-day CPET. So CDC cannot acknowledge the Snell-Stevens evidence (which has now been duplicated by several universities in different nations) – or the second-level research such as the Lights’ work on blood draws during and after CPET.

      There have been several mind-blowing CFSAC events, but one that stands out was Beth Unger supporting GET research and the hard link on CDC’s website to Peter White’s psychiatric clinic in London, at the same time Chris Snell was chair of the committee. I suggested that they reference Snell’s website – at least as equal time – and she said that wasn’t going to happen, period.

      • Cort Johnson says:

        You might want to discuss that with Staci Steven and Nancy Klimas both of whom strongly advocate their own heart rate based exercise programs.

        Should the CDC push for those kinds of programs? Absolutely I think they should and I hope they will.

        • weyland says:

          Just because Nancy Klimas does something doesn’t make it right. ME experts such as John Richardson and Elizabeth Dowsett strongly suggested convalescence and complete rest for ME patients. They recognized the danger of exercise on virally infected muscle, as is found in enteroviral ME patients.

          The CDC has no business pushing exercise programs of any type for this disease without extensive study. No official body should push any treatment that hasn’t undergone proper medical trials to assess efficacy and harms. I’m honestly shocked that you would suggest otherwise.

          • Cort Johnson says:

            No – but when someone like Dr. Klimas or Dr. Peterson says something like that it is something to think about.

            I think your worries about the severely ill will be allayed if you’ll just read what the CDC says on their website.

            I would note that the CDC is starting what is surely the largest study ever devoted to the severely ill as part of the multisite study. Do you really want to stop that?

    • Cort Johnson says:

      This is a question of style over substance in my opinion. Unger may not have said PEM is unique to ME/CFS ( and it certainly is not unique to ME/CFS by the way…) or that it is THE key symptom but the work she’s doing indicates that she fully gets it about exertion.

      She’s doing the biggest exercise study ever done – it will measure cognition, include a full gene expression analysis and it measure lactate. I’m not clear if cortisol is involved.

      She also recently completely a study using a stressor to assess NK cell functioning I think it was.

      She also recently completed a study examining complement gene polymorphisms in ME/CFS. Complement was the immune factor that popped up in the CDC’s first exercise and gene expression study. They’ve since done several study examining complement factors.

      Why would the CDC be doing so much work on the effects of exertion if she didn’t believe it was a major factor? She wants to be successful and she recognizes that things go hooey when we exert ourselves and she’s investigating that.

      Research is where the rubber meets the road. Anybody can say anything at a meeting but the fact that she’s devoting significant amounts of funding to this topic is the important thing. I imagine that the multisite studies will tell us a lot about the effects of exercise on ME/CFS.

  14. Matina says:

    I agree with Jennie Billie mary schweitzer mary dimmock. The problem is we need one name aligned with a case definition. The RFI states CFS when we all agreed to use ME/CFS and the CDC refuses to use it. Than you have the stigma of CFS than you have P2p report and now anothe name SEId. You have cfids you yuppie flu you have CFS/me. It would be a good program once we all parties agree upon the name and insure don’t want CFS bc I don’t have chronic fatigue. I have chronic un known neurological issues, chronic GI issues, PEM, chronic autonomic issues, chronic pain in my jones joints and nerves and the lists goes on.

    Now with the multi site study our experts really didn’t have a choice based on funding so they most be settling or using it as a tool to rework future studies. It’s not a perfect study but we won’t have one until we have a better case definition. Do you see pharma involved? No! Why? Because of the different messages and the portly defined case definition of fukuda? One reason why amplige now didn’t get approved was do to efficacy. It would be almost a miracle for any drug to have good efficacy on a fuduka definition.
    All the docs I try to get to treat me where i live go to the CDC website & tell me to do GET & CBT and ignore the papers i send from experts.
    You need to look at the whole picture and situation of the disease that has been going on for years. Any good strategist would tell you to stop what the govt is doing. We are in a crisis with mass chaos of good information & bad information. And how many names has named and case defintions. So confirm a name case definition which would be approved by the consensus of our experts and patient community that you develop a strategic plan for research, medical education and roll it out. Otherwise we all will be here for years to come but i will though in the towel and go live on an island and get high all day so I don’t have to suffer so bad and pray to God to pls take me now! Bc I may be well on my way to being severe or 80% home bound and that is inhumane!

  15. The real question here – and I think Jennie for bringing this up – is not whether we do something to shut down the CDC program on CFS – the question is do we go out of our way to help out the CDC program on CFS, which is in danger of losing its funding.

    My immediate response is – nope. I have other things to do, thank you.

    There’s just this nagging thought in the back of my mind that they WANT this and I am somehow walking into a trap … I REALLY have a history of being burned by CDC.

  16. Eliza says:

    As a general rule, I want to see more, not less, federal funding for ME/CFS work. But I want to see that money spent in a way that is beneficial to patients and builds on the latest knowledge. The CDC has consistently shown itself to be largely tone-deaf and resistant to evolve it’s thinking with the research and the world around it. I agree with Jennie–I won’t spend time advocating for money that may be used in ways that are actually detrimental to patients or at least reinforcing of the status quo.

    With regard to the education efforts, that’s been done before and it didn’t radically change the state of the illness. Progress lies in solid research based on the latest knowledge, and CDC has exhibited limited appetite for that.

    • Cort Johnson says:

      OK Eliza – I’m going to push you on this. How is the CDC’s research not in line with the rest of the ME/CFS community. Are the gynecological studies out of line? The NK cell study examining epigenetics? The exercise studies looking at lactate and gene expression?

      Just how is that out of line with the ME/CFS communities desires?

      How is doing a multi-site study involving the top ME/CFS experts in the country out of line with our needs. How is that being resistant to change?

      How is all of that not utilizing the latest knowledge?

      ?????

  17. Anita says:

    well I have to jump in here and say that I am part of the cdc multi-site study which is actually being run by Open Medicine Institute. All of my questionnaires go there and they responded to my questions regarding it. That study is hugely important. Also I was at the meeting where Dr Unger (whom i admire and appreciate) presented the slide from the data from each site across the country and when overlaid one upon the other showed CLEAR six subsets which cannot be explained any other way. From viral categories to sudden onset, to clusters, to pain, to family members having the disease — it was very valuable from a scientific perspective. It is my opinion that Dr Unger has done a remarkable job of navigating her environment within the CDC to help us and that without her and that funding we will be sunk faster than you can call a doctor for help. Speaking of which we NEED that funding to train and educate other doctors so that the ENTIRE patient population can get the medical care we need.

    I have raised three children and it occurs to me to tell all the patients to get along and bind together in unity for funding. Do you realize that the senseless arguing of all of our opinions will in the end cause more harm than good? Not to mention the fact that stress is horrible for each one of us and it needs to STOP. Every single day I pray that there will be treatments and that simply cannot happen without the single minded vision of each one of us putting aside our differences and working together towards educating the government on our disease so they can help us. This type of interactions are not helpful. Losing CDC funding is not helpful. The government is doing all that we asked them to do. It may not be quick enough but it is more than has ever been done. I have been ill for 30 years and the patient population has almost United, so let’s work towards that individually and collectively OK???

    • matina nicholson says:

      Anita: I understand your point of view. However, I have been suffering for 10 years and now mainly home bound and have limited care.

      From my point of view and on behalf of all who have suffered so much longer, I don’t understand why you don’t see the total picture? Dr. Unger has the power to request more funds and fight for us at this stage of the game. The multisite study is ok BUT COULD of been so much better so that we all can have a chance of life SOONER than LATER.

      The experts are not going to walk away from a potential study that will help a little – they are in a catch 22. I bet if you get all the experts in a room and ask them what they would like to see in form of a studies it would be a whole different story. For example, they all wanted the multi-study to do more…I don’t have the energy to go find the details but as always got stuck with what they got and doing the best they can.

      WE are the only disease that has been neglected by HHS (NIH & CDC) with the lowest funding for a serious life threatening disease (per the FDA) and yet after all these years we have do designated funding or if we do its bottom of barrel.

      Plus the Fukuda definiton is not what the consensus of our experts want to use! But they had to. At the rate we are going, many of us don’t have a chance at life. WE should be fighting more a new name, demand more funding from NIH and CDC and listen to our experts than telling out experts this is how we are going to do it. Review the CFSAC recommendations….everything we learned from the P2P report was mostly a no brainer. However, we know have it on paper. IOM report is a good platform for a case defintion. But as Lenny Jason pointed out – there are major flaws that need to be discussed and ironed out and we just added another name to the variety of names to our disease.

      Aids/HIV had a period of over 5 years of neglect and now look how well the majority of this patient populations is doing. Why doesn’t the CDC and NIH use the monies and establish a strategic plan to conquer this disease? Where does humanity come to play. Because Humanity and Medical Ethics is a big topic discussed at the government level as well as a worldwide level. Why do addicts get more support, help & respect than our disease?

      We should be demanding Equality than saying wow thanks for the 6 million dollar for research that will take another 15 years for answers. Ohh thanks CDC for not using ME/CFS and just using CFS because I don’t have CHRONIC unexplainged fatigue..I have chronic neuro, GI, autonomic, pain in bones, nerves, muscles, PEM all at equal weight so why don’t they call it Chronic Fatigue PEM Neruo GI, Autonomic Multisystem disease?!

      After 30 yrs …and we still have so many under answered questions due to funding and its unexceptable. I would sure hope if I was severe ME and hooked up to an IV for the rest of my life I would be fighting for them to get them better faster and laying their just waiting to die! That is just not right. Same for patients that are homebound or bedbound for the rest of their life. How is that different than having a terminal illness? WE just suffer immensely longer!

      Pls DO NOT Take this as being disrepectful. All I am trying to say especially for you for having it for 30 yrs. they owe you and others the HUMANITY AND MEDICAL ETHICS to provide the appropriate funds, name, case definition and a strategic plan just like they did for AIDS and you all would not had to suffer endure the lives you are still enduring. ITs not righ!

  18. At first, I was surprised that you would not support funding for ME/CFS for the CDC. After reading your report, Jennie, I can see why you reached your decision. It makes sense and then adding your limited energy to the mix, and it is the right decision for you. I’m inclined to agree. Why continue to support the CDC’s negativity and refusal to recognize the disease for what it is, by requesting funding?

    It is difficult for me to understand why they continue their long negative stance, given all the documentation to the contrary. I’m sure there are many things that assist in the CDC’s decisions – many we know nothing of, and many we can only surmise.

  19. We’re talking about $5.6 million out of a budget of roughly $400 million for the zoonotic BRANCH of the CDC. (For the record, “zoonotic” refers to diseases that jump from one species to another, like bird flu. Why is that where we go?)

    Not CDC as a whole. Just one branch. In fact, it’s just 1.6% of the entire budget for this one BRANCH.

    So … I have to believe that if they WANT to fund the study, they can fund the study. Within CDC. If they want. But that’s a pretty pathetic amount of money.

    My husband was chair of his department for a decade. He used to joke about chairs’ joint meetings with the dean and provost as “diving under the table for quarters.” Too bad the “half-penny” was retired, because that’s what we’re elbowing each other out of the way for.

    • matina says:

      Totally agree!

    • And that’s out of a total request of $7 BILLION for CDC as a whole. $5.6 million out of $7 billion – not to mention that the increase they are asking for exceeds our paltry funding. They want an INCREASE in funding to the tune of $98 million for budget authority – I think that means discretionary funds – nothing there for us? Their overall budgets for preventing accidents is $257 million. One could go on.

    • Cort Johnson says:

      Finally we agree – it’s pathetic…:)

  20. billie moore says:

    To Simon:

    The CDC supposedly “archived” the Toolkit. Did you see the site recently? The full Toolkit remains and starts on page 2 of the link shown here. The Toolkit is as available as it has ever been, and still only recommends CBT and GET as therapies. http://www.cdc.gov/cfs/pdf/cfs-toolkit.pdf.

    To Cort: Too many arguments against what you are saying to list them here. I even think the multi-site study would not hold up in terms of selection of patients if it were to be evaluated objectively as a study, which it won’t be, because…it is from the CDC…therefore, it must be well done. Seven sites, multiple expert practitioners, but no consistency of diagnostic criteria among those doctors; just what each feels determines a true ME/CFS patient.

    I agree with everything Mary Schweitzer and Jennie and Mary Dimmock say. The CDC is dug in regarding not changing the Toolkit, not using ME in the name even though other HHS depts. do so, and even though the IOM and P2P studies use ME/CFS; will NOT move from CFS even though the IOM has recommended against this name for all the reasons we know are harmful to patients; but will waste millions more dollars on a CFS PR campaign. What’s not to like, Cort? All of it. This was done before by the CDC under Reeves in the early 2000’s, with the CFIDS Assn.’s partnering, and it was a total failure, since attitudes certainly did not change – a $4 million waste of money. And yes, I do want to see reality in pictures of ME patients – SICK people, in wheelchairs, in beds in the almost-dark – real patients, not people who look as if they just happily finished exercising, or are pleasantly relaxing, or do not even look worried, much less deathly ill.

    The CDC is not our friend. Its materials are doing great harm and are misinforming doctors daily.

    • matina nicholson says:

      Ditto Simon.

      • matina says:

        now confuse who is supporting what. So.. I agree what Billie stated that Toolkit and CDC harming patient community & agreeing with mary Dimmock, mary schweitzer and Jennie’s comments..ok..time for bed.

    • Cort Johnson says:

      My gosh, Billie – after all the pluses I put out you’re upset because

      The CDC is not using “ME”
      The Toolkit is much harder to get at -I looked all over for it and only found it on the IOM page.
      With regard to this: Seven sites, multiple expert practitioners, but no consistency of diagnostic criteria among those doctors; just what each feels determines a true ME/CFS patient. – the diagnostic criteria will come after they look at the data from the patients – not before. Look at it this way – do you really think that the vast majority of patients in those practices will not meet the CCC criteria or SEID criteria. Montoya said 100% of his patients meet the SEID criteria….

      Wasting millions of dollars on a publicity campaign – I find it incredible that advocates actually argue against using money to get the word out about ME/CFS given the lack of knowledge in the medical community about ME/CFS. I just can’t believe it!

      The money does not come, by the way, out of the CDC’s research budget. Unger got it out of different part of the CDC that does these things. It doesn’t affect her budget at all.

  21. Sue says:

    Well guess what. It is going to happen and you can’t stop it so stop wasting time writing blogs that will not make a difference and only stirs up the community.

    Focus on your own work and if anything give YOUR story to be highlighted on NPR. And leave your advocacy at home. Just deliver the information about your illness.

    • Jennie Spotila says:

      If it bothers you so much for me to express my opinion, why are you reading it? You are correct though – I leave my advocacy at home. Primarily because I have been housebound for almost 21 years.

      • Sue says:

        Because MEAction plastered your response with the posting of the CDC Public Health Promotion on their FB page or I wouldn’t even know about your so called advocacy. And don’t waste your precious energy responding to me with all you have done. I am already not impressed.

        The community doesn’t need this. You need stop putting your energy and time stirring the community up and instead put together an intelligent, well thought out and respectful request in an open letter that helps mold the CDC promotion instead of going off the rails with a blog that a paltry handful of the millions that are sick are reading and these few being put into turmoil.

        Take the example of Llewellyn King and The Countess of Mar and their Open Letters. They make outstanding arguments for their positions and for the community with intelligence and grace. It goes on the record as a letter sent and sometimes not only getting into lots of forums, pin boards, FB pages and tweeted, they actually get published.

        • Denise says:

          Please note that Jennie has clearly said (in earlier comments and in her post) that as a very sick patient, she must make choices about where to focus her efforts. This is usually the case for most advocates. As such, Jennie has said NIH is her preferred focus.
          She has also said:
          “I’ve said this several times now, but I am not going to spend my advocacy energy trying to kill the CDC program, nor will I spend energy trying to save it. When I weigh the value (and hoped-for value) of the multisite study against the education campaigns (past and future), I come up short. ”
          If you have not already done so, you might want to familiarize yourself with some of Jennie’s other work.
          For instance, her comments on the NIH Strategic Plan:
          http://occupyme.net/2015/07/28/a-new-strategic-plan/ among other things.

          • Sue says:

            She could have spent as much energy writing to the CDC as she could have blogging and commenting here.

            Period.

    • Rebecca says:

      Sue, you are extremely rude to Jennie. It takes a lot of energy to be so nasty.

  22. Sue says:

    And it would help if those with concerns would write an open letter to the head of the CDC and this project. I guarantee you no one from the CDC reads your blog so send a letter right to those you want to impact the most there and indicate it is an open letter on your blog and then we will all put it in various forums and pin boards.

    If you don’t have time for it how did you get the time to write this blog? Stop bothering the community and get to the CDC with an open letter and do it in a manner that is positive and respectful.

    GET and CBT is a big problem. PEM must be highlighted. Males of all ages and their stories must be told and the fact that the NIH has ME/CFS housed in women’s health is wrong. Make your argument and send it off to the CDC.

    • Bob Miller says:

      Sue, I agree…Yacking here is Preaching to the Choir, write CDC and your Representatives…Tell your story and ask for FUNDING!

    • Jim Ellsworth says:

      “I guarantee you no one from the CDC reads your blog so send a letter right to those you want to impact the most there”

      If no one from CDC reads Jennie’s blog then why would they pay any attention to a letter? Do you think that no one has yet thought of sending letters to NIH, CDC, Congress, etc.?

      Actually we know from FOIA requests that CDC and NIH pay very close attention to what advocates are doing. I suggest you check this out:

      http://occupyme.net/2014/11/10/p2p-and-dr-francis-collins/

      People have been writing letters for over thirty years. The non-impact of all that letter writing is quite obvious…

      • matina says:

        your right Jim.

        I already sent my letters to the CDC, NIH, senators and to my senator, And Sectary Burwell. And have more letters coming.

        • After the latest round of letter-writing, I received NO response from ANYBODY in the executive branch (that would be HHS, NIH, CDC, FDA) – but I receive canned letters from SOME of my representatives that said, “Glad to see you support increased NIH funding.” Not increased funding FOR ME/CFS. just increased funding. (I wrote both my Delaware and new Nevada reps – only the outgoing Senator Harry Reid responded and actually included ME/CFS).

          I don’t know about others, but I can rattle off things here, especially if it’s like something I wrote somewhere else, with a lot less energy than it takes me to do a formal letter or formal testimony. The latter two get revised numerous times – I have to check and double-check for places where I have inavertently switched words, or misspellings, or wrong attributions – right now I am battling an extra infection, just for fun, and it’s got me kind of wiped out so I don’t trust what I write without revising carefully. And I’m also dealing with serious family issues. Meghan Shannon once said in her testimony that most people who testified had a family member who served as caregiver – it was really hard to do this by yourself. Something I am now learning.

          But I think it is always good to discuss information, analysis, experience – and, of course, I think history matters. This is an interesting discussion. Thanks for starting it, Jenny.

          • Cort Johnson says:

            It is quite a discussion – that’s for sure. 🙂

          • Matina says:

            I second that! Lol! I finally had time to step back & breathe! We all been thru so much and still having a tough time. we just need a break and keep fighting for better care & treatment with HHS, etc. Til CFSAC…

  23. Bob Miller says:

    Jennie, I posted a comment earlier today around 2 pm PST ??? Do you have it ?
    Thank you… In short I would say there is too much good that out weighs the bad at CDC to shut it down…The tool kit can be found if you search for it, if you go to the doctors and professionals link, the tool kit does not pop up, you must search for it and you get these links Below:
    This statement is posted before the mention of the toolkit:
    In 2011, CDC posted the CFS Toolkit on its website to provide an easy-to-use resource for clinical care. During recent months CDC scientists had been working with CFSAC and others to revise the CFS Toolkit. After publication of the IOM committee report, CDC decided to archive the CFS Toolkit and the brochure “Recognition and Management of CFS: A Resource Guide for Health Care Professionals”. Those interested in reviewing the CFS Toolkit kit in its entirety can view the document here Adobe PDF file [PDF – 17 pages], and the archived brochure is available here Adobe PDF file [PDF – 3 pages].
    Chronic Fatigue Syndrome Toolkit – Centers for Disease …
    http://www.cdc.gov/cfs/toolkit/archived.html
    On February 10, 2015, the Institute of Medicine (IOM) Committee on Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome released …

    [PDF] Chronic Fatigue Syndrome A Toolkit for Providers
    http://www.cdc.gov/cfs/pdf/cfs-resource-guide.pdf
    Chronic Fatigue Syndrome A Toolkit for Providers Institute of Medicine committee releases report on ME/CFS On February 10, 2015, the Institute of …
    Perhaps if patients stop beating on Dr. Unger at CDC and ask to see how we can assist her with researching us, she would be more responsive. She has done more in her first year then Bill Reeves did in his entire tenure…Jennie, you were with CFIDS AA when Reeves was in Power, you truly do not see a change??? I will respond more later if you are unable to find my post.

    • Jennie Spotila says:

      Hi Bob, I do not see a comment from you from the afternoon. This one was held in moderation because of the multiple links. I look forward to hearing more from you.

      • Bob Miller says:

        Jennie, I am once again sad to see our patient community thru frustration, attacking one another. This discussion has some very caring and intelligent people engaged. I do Not believe that anyone here wishes to do harm. That being said, to think that if we send mixed messages to Washington (Fund this, but Not that re: ME/CFS) that they will be able to determine the good from bad is unrealistic. One Simple Message to DC, Increase the Funding for ME/CFS. I will be posting a Template letter that supports Increased Funding for our Disease and it will include a “Direct Quote” from Dr. Peterson re: The CDC. Jennie you mentioned that the 7 site CDC clinicians receive funds for their part in the study, while that is true, they actually lose money on each patient and control enrolled. This is Not a money maker for our experts. Why do they do it then, because they care. It’s why they have remained in this area of medicine.

        • Jennie Spotila says:

          To reiterate what I actually said in my post, I am not telling DC that I want funding reduced. That is a mischaracterization of what I said. I am sending no mixed messages. CDC and NIH can both do far better by our patient population. They should.

          • Cort Johnson says:

            I’m a little confused by this.

            You don’t want funding reduced yet you argued that we’re better off without the CDC program – which would reduce funding.

            I don’t see how you can have it both ways. Either cut the CDC program and lose the data on hundreds of patients in the multisite studies, the work on NK cell functioning, the exercise study and whatever the CDC is going to do in the future or maintain it. Either you think continuing CDC funding will provide benefits to the ME/CFS community or you think continuing to fund it will harm it.

            For me I’m quite sure of the first.

    • Jennie Spotila says:

      As an aside, it is precisely my experience up close to CDC’s education program that informs my opinion now – especially about that FedBizOpps notice.

      • Cort Johnson says:

        That suggests that you strongly disagree with the education programs featuring Dr. Bateman, Dr. Natelson, Dr. Lapp and Dr. Komaroff. Those are the only recent education efforts that I can think of – I don’t understand why you would object to those so strongly that they would help form the basis for your argument that the CDC program should not be continued. I think they’re excellent programs. Am I interpreting your position incorrectly?

        • Cort, I’ve posted this two times already. Here’s the third time. Now go look at it:
          http://www.cdc.gov/cfs/education/
          [I have copied the text below. These are the CDC’s educational programs; I did not include the link to other ones because we are talking about the CDC. Click on the link for the first course: Diagnosis and Management of Chronic Fatigue Syndrome:
          http://www.cdc.gov/cfs/education/diagnosis/index.html

          That is the course I was talking about. You can skip the text below and go straight to the educational course in diagnosis and management of Chronic Fatigue Syndrome, currently what you get by clicking on http://www.cdc.gov/cfs/, then on the left you click on “information for healthcare professionals,” then you click on “Continuing education” or go straight to the first course.

          When you get to the course, you just click on “launch course.”

          Or, conversely, you could try out the course the CDC offers on “Sleep problems in CFS.” There you will learn all about sleep hygiene and even cognitive behavior therapy for insomniacs, along with the necessity to limit sleep so that you can sleep when you are supposed to. They do suggest some pharmaceuticals if nothing else works.

          Continuing Education
          Woman looking at computer
          The Centers for Disease Control and Prevention (CDC) invites health care professionals to earn free continuing education (CME, CNE, or CEU) through Web-based, self-study courses on the diagnosis and treatment of chronic fatigue syndrome.

          Providers
          Reading the course curriculum is a requirement for obtaining continuing education, as is a post-test and course evaluation. The post-test (exam) and evaluation are accessible after completion of the course content.

          Non-Providers
          Non-providers may read the available course curricula in their entirety. Only providers seeking continuing education will be able to access the post-test and evaluation.

          Directions
          Choose one of the courses listed in the available courses section below. Click on the links provided below for a more detailed description and access to the course content.

          Take the post-test for the respective course and score 70% or higher to become eligible to receive a continuing education certificate. Participants receive two opportunities to score a passing grade. Take the required course evaluation. Print the continuing education certificate.

          Available Courses
          Diagnosis and Management of CFS
          Course WB1888

          Sleep Problems in CFS
          Course WB1889

          In exchange for you looking at these, I will acknowledge that there is more substance and less BS – but still they over-sell their own stuff and do not give a basic balanced bibliography that would include, shockingly, other people’s work (such as the bibliography at the back of the IOM Report.)

      • Bob Miller says:

        Jennie, Your experience was with Reeves in the Driver seat, he screwed CFIDS AA…Locked himself into his spot at CDC…That is not the same as what Dr. Unger is doing…For those who believe that we need Funding from the Federal Gov’t here is a Link to Why and How Below, Which includes a Statement from Dr. Peterson on his beliefs re: The CDC.
        One of the studies to be cut would be the CDC’s Clinical Assessment or Multi-site study. Dr. Daniel Peterson had this to say about that study: “The CDC’s clinical assessment study is pivotal to patients with CFS/ME. It allows CFS clinicians to analyze our ‘classic’ patients for commonalities, subset distinctions and biological markers in a collaborative manner. The last few years of this work with Dr. Unger and the CDC staff has increased our understanding and evolved the spectrum of collaboration. Many more resources are required to expand on recent scientific findings.” Dr. Dan Peterson

        Read more from My wife, Cort Johnson and myself:
        ACT NOW: Just Say NO to Funding Cuts for ME/CFS Research:
        http://www.cortjohnson.org/blog/2015/08/07/act-now-just-say-no-to-funding-cuts-for-mecfs-research/
        Thank you!

  24. Janine says:

    It sounds like the CDC wants to make headway to alleviate patient suffering from the various symptoms listed on their website (referred to as Chronic Fatigue Syndrome). If the CDC can not work with the patient communities and other agencies to get a consensus on the definition of the health problem they are trying to solve, then spending $5M of tax payer dollars to gain large amounts of research data is pointless.
    How will the $5M of research ‘big’ data be interpreted?

    After reading all of your responses, I viewed some of the CDC material. I saw only a small amount of information that could help me or my health care providers.
    I mostly found it confusing and inconsistent. Regarding some of the CBT implications, I found them offensive.

    From reading the posts, it sounds like the CDC has burned bridges and lost trust from some of the ME/CFS community. Does the CDC have any plans to remedy this?

    I want to see the NIH gain better funding to study the complexities of ME/CFS. This may not be ultimately the perfect choice, since I realize that NIH is the pathway to “Big Pharm” new drug profits. A new drug may help some ME/CFS patients (assuming there is enough profit for “Big Pharm” to be interested), and if it made it thru the FDA approval process, that would be great!

    • Cort Johnson says:

      Dr. Unger has made extensive to build bridges to the ME/CFS community. She has met with many patient groups. She has visited each of the ME/CFS experts sites. She has hosted several talks featuring ME/CFS experts such as Dr. Klimas and Dr. Montoya. She attended the Immunological Workshop sponsored by the Simmaron Research Institute. She has worked with CFSAC to greatly modify the materials on the CDC’s website. She has responded to numerous interview requests.

      She stopped the stress and behavioral studies that infuriated so many. She’s embarked on a thoroughly pathophysiologically oriented research program.

      She is trying very hard to rebuild bridges to the community. It takes time, though. Old attitudes to the CDC clearly prevail in many people even after a substantial shift has been made.

      She is a complete change from Dr. Reeves in this regard.

      • Janine says:

        Hi Cort,

        That’s good to hear that Dr Unger is working towards steering a big ship.

        Does Dr Unger have a twitter account? I follow Tom Frieden @DrFriedenCDC. Barack Obama (@POTUS ) sometimes hosts Q/A sessions. Do you know if Dr Unger is open to connecting to the community and willing to host a Q/A sessions?

  25. Denise says:

    Just a reminder – writing an open letter such as those by Llewellyn King and the Countess of Mar is an option available to all advocates. If there is an area of concern that is not being adequately addressed, you might be able to help us all out by taking it on.

    • Sue says:

      Well my latest energies went into sending out 320 tweets on the Palo Alto “Invisible Illness” youtube post to the CDC and their heads, the NIH, NSH, Whitehouse, POTUS, The Queen, medical journal after medical journal, advocates, hospitals, researchers, celebrities with ME/CFS and those I know they are friends with, local news media in print and TV and major news organizations in print and TV.

      I asked them to view and share the 12 min. mini-doc on ME/CFS and I also e-mailed to friends and family and any organization in news or hospitals that did not have a twitter account and in the comments section to just about everyone asked them to share with Google and Twitter and FB to everyone in media and the medical field. I would like to think that I had something to do with its 8,000+ views.

      We do have advocates that can write extremely well and with great intelligence and professionalism and I urge them to do Open Letters. You then mail requesting a signature of the person you are sending it to and have the card returned to you and with the tracking number of the card in the REFERENCE area of the open letter. Then you post the letter in your blog and we all pick up on it and share it through whatever means we can.

      I urge the advocates to write their own letters to the head of the CDC (Collins?) with perhaps cc: to the head of the NIH and even POTUS and help MOLD the CDC/NPR process because it is going to happen without advocate input or not.

      Again, the concerns are, as usual, GET and CBT, PEM and the fact that the NIH has this housed in women’s health and of course, funding. Several advocates can write on 1 or 3 of these things co-ordinating the efforts with one another so that each letter is clear and concise and all issues are covered.

      And don’t forget that each patient is an unique and individual story and some are ill but can still work full time but at great cost to their social well being and family to never being able to leave their beds again and everything in between. Everyone has a story to tell and don’t get upset when a patient’s narrative does not fit your experience because I guarantee there will be patient stories that don’t seem to promote the gravity of the experience. If anyone feels that is the case, perhaps you should try to get your story across on NPR.

      I am not an advocate, do not come with an extreme wealth of information as many advocates do nor do I possess the writing skills many of our advocates have. But great care has to be taken when writing to people in these positions or they will just shut you out and move on without considering the information you outlined.

      • Jennie Spotila says:

        For a person who says she is not an advocate, you seem to have a remarkably strident opinion about how I should advocate. I find it fascinating that you would presume to tell me how to spend my energy and time, especially when you clearly have not familiarized yourself with the many calm and well-reasoned letters I have sent to Dr. Francis Collins (NIH), the OIG, CFSAC and Congress.

        • Sue says:

          You are darn right I have something to say about your advocacy.

          I had no idea who you were until you’re response was plastered on the MEAction FB page.

          What I am saying is stop stirring up the community and putting it into turmoil and write an open letter to Collins on the CDC/NPR process or just sit and stew when you don’t like what comes out of it.

          • Jennie Spotila says:

            I refer you to my blog policies if you wish to comment further on my blog: http://occupyme.net/comment-policies/

          • weyland says:

            Sue I would highly suggest familiarizing yourself with the advocacy work that Ms. Spotila has done before you embarrass yourself further. She has done a great of work for us as patients, all as a patient herself.

            I don’t see how this is “stirring up the community”. First, she reported on something most of us probably wouldn’t have even heard about. She provided a great deal of fact, and then at the end provided her opinion, not a call to arms. This is her personal blog and she is free to write her opinion down here without harassment from those that don’t agree.

            The facts are all there, everyone is free and entitled to form their own opinion about what is the best way forward. Please realize that Jennie and some of those commenting here have been heavily involved with advocacy work for years. They have spent a great deal of effort trying to shape and influence the way CDC handles this disease, only to be rudely dismissed time and time again. It really is debatable whether the CDC has done and will continue to do us more harm than good.

          • Rebecca says:

            Jennie, I very much appreciate your advocacy.

  26. Anonymous says:

    ” Sue says:
    August 6, 2015 at 11:38 am

    She could have spent as much energy writing to the CDC as she could have blogging and commenting here.

    Period.”

    It is because of Jennie’s post, rather than a letter of hers to the CDC, that most of us became aware of the situation.
    It is also true that the rest of us can choose to use our time and energy to write a letter.
    I look forward to reading your open letter Sue.

  27. Sue says:

    I already stated I am NOT an advocate and perhaps you just missed my last post. I am doing all I can also but again I do not possess the writing skills nor the wealth of information I KNOW the advocates have.

    THEY need to write these letters just as Llewellyn King and the Countess of Mar has and a couple of others who made it into print at the Washington Post and Palo Alto Online.

    Basically, the advocates are circle jerking around the community. I will not write the letter because I just do not possess those skills needed while it is quite evident that there are many advocates that do they seem to want to just spew blogs no one in the public or in power to do anything will ever see.

    But believe me, I will send out hundreds of tweets and e-mails of an outstanding letter to the CDC/NPR process to all those I tweeted to on the mini-doc at Palo Alto online.

    • Eliza says:

      Sue, so you admit to not having advocacy skills or understanding the issues in a sophisticated way, yet you presume to attack an advocate who has worked for this community for years and has assiduously committed herself to understanding and objectively communicating to the community both the medical/scientific and political dynamics of this illness. Jennie has always been quite clear in her posts about what is objective evidence-based fact and what is her personal conclusion based on that evidence. Which part did you miss?

  28. WTF? are they doing now?

    I have just noticed on the website (on the education page) the re-branding of the Fukuda definition – they are now calling it the “International Definition (1994)”. I confirmed (using an unnamed source, hee hee) that they really are doing that. Why?

    Once again, they throw in information that will just confuse everybody more. I’ll leave off the problem that both the Canadian Consensus Criteria (2003) for ME/CFS and the new research definition for M.E. (2013) from a conference at Alberta, Canada, both are technically “The International Definition.”

    With respect to CFS, there is the article that came out of the annual conferences in the early ’00’s (using the replacement funds that Congress had originally mandated go to studies on Children and adolescents, pregnant women, and minorities) is, technically, the “International Definition” for CFS – and Reeves’ questionnaires, which Reeves claimed “operationalized” the Fukuda definition but were actually modelled after Wessely’s questionnaires (which “operationalize” the Oxford definition – and that’s how Reeves ended up with an patient estimate of 2-6 million), were also called by Reeves the “International Definition” – now we have Fukuda being called by CDC the “International Definition” (1994).

    [confused yet?]

    Why would they do this? If they are well-meaning, it’s simply incompetent. If it’s deliberate rebranding, it just serves to make things more confused, which will just serve to make research more problematic.

    Perhaps it is an effort to say, “We don’t have to use the IOM definition, because we are using the international definition.”

    But, once again – and typical for CDC – there was no notice of this, no explanation for this – they just did it.

    BTW – interesting that their budget request was for $5.7 million when the prior educational project cost $4 million. After paying outside groups to DO the educational project, how much would be left from the $5.7 million?

    • Cort Johnson says:

      This is so minor, Mary.

      The CDC is studying the doctor that you have seeing for decades. They will be reviewing the effects of the treatment that has helped you so much – that you have advocated so hard for. They will be looking at the tests that you have again and again lobbied for using in ME/CFS. You finally have a shot at getting those out into the open air.

      Yet here you are suggesting that this program should be let go and focusing on small matters of terminology.

      You know what’s really important? The fact that someone is finally including Dan Peterson in their studies. You know what’s really weird? That you care more about some terminology on a website page than that fact.

      Next time you see Dan I suggest that you ask him the CDC study and Dr. Unger.

      (By the way they’ve been using the term the International Definition long before the IOM report began.)

      • No, Cort, they have never used the term “international definition” for the Fukuda definition. They used it for Reeves’ questionnaires that “operationalized” the Fukuda definition. Actually, what they used is more scholarly correct – Fukuda (1994). And I think a lot of good research was done using that definition (in the hands of somebody who understands the disease).

        You said I was chasing a shadow because I noted that James Jones was behind the CURRENT medical education video on CFS on the CDC’s website. It’s not chasing a shadow to point out something that is CURRENT. And I wanted to point out that they may SAY one thing – but what are they actually teaching physicians? Not much that is going to help patients.

        The CFS shop at CDC has for a long time sent mixed messages and continues to send mixed messages. If this study comes up with something that is REALLY useful, I’ll be delighted. But in the meantime you have to recognize they are doing things that hurt patients. I don’t care that Reeves is dead and Jones is old (but not as old as Fauci … and he’s still a player). The CFS shop at CDC still teaches the public and the medical profession nothing useful about our disease – NOTHING. It’s more blurred now, true. That certainly doesn’t make it more useful.

        In part I think it’s an institutional failure – CDC has for some time now operated on a model that is different from traditional public health – the contrast is really strong if you look at Gilliam’s 1938 report on the 1934 L.A. outbreak – 100 pages long complete with case histories and a map of how people walked from their cars to their place of work within the hospital – to the Holmes and Fukuda articles, both just a few pages long.

        They no longer practice shoe leather epidemiology – getting on the ground to SEE the patients and control outbreaks – because we have an outbreak here and they have shown absolutely NO interest in identifying it, let alone controlling it. I guess we’re so used to being treated shabbily by CDC that we have set a low bar. We’re so excited they would do a study at all, working with competent researchers and clinicians, that we’re giving them a pass on what they tell the public and the medical profession about us.

        Back in the mid-1990s when I first met Bill Reeves, I asked him privately why CDC did not publicize what they knew about CFS. At the time, it was on the CDC’s list of the 5 most important emerging diseases. Kathleen Houghton of Alaska had asked the same question of a CDC rep who gave a presentation up there, and I was curious to see if I would get the same response. I did – which means it was a policy response.

        We were both told that they could NOT go public about CFS until they had a way to avoid getting it. They said it would cause panic.

        That’s crazy. Don’t tell people anything about MS because we don’t know how to prevent getting it? It makes no sense.

        So I took a broader look at CDC. Basically, they focus on two strategies. The first is teaching people to avoid dangerous behaviors – heavy drinking, smoking, getting pap smears and prostate cancer testing, bad eating habits, reckless driving. That’s why they point out there’s $250 million just for accident-avoidance (meaning things like falling down the stairs) in this year’s budget.

        They have been using that strategy with us. They mainly perceive this to be a disease about behaviors. (For example – we have trouble dealing with stress.)

        The OTHER direction they go in is vaccines. What did Beth Unger do BEFORE she was in charge of CFS? She helped developed the HPV vaccine (rather ironic, don’t you think?). I knew people who worked on that and had a lot of respect for her, which is why I had such high hopes. But … I’d be surprised if they are anywhere near a vaccine for something they refuse to admit might be related to immune deficiency and viral infections.

        Which brings us back to behavior modification. (And I don’t think she’s real comfortable with that, but she’s stuck with it.)

        I would be ECSTATIC if the current study led to a way to diagnose this disease accurately so you could then start finding the 850,000 adult Americans whom even CDC admits are undiagnosed.

        But … if you were CDC, would you really want a situation where over a million patients suddenly had a name for what they had, and an incontrovertible test that proved it was physical? MMMMMmmmm. If I was a die-hard bureaucrat, I’d have to think on that one. I sure know the insurance company doesn’t want that! (If Big Pharma is interested, we just got lucky.)

        So – politically, the current CFS group at CDC is in a very awkward position. They have too many constituents who need the CBT/GET option still in there. Who do NOT want ANY talk of viruses. Or objective testing proving who has it (because once we can prove who has it, they can no longer play pretend it’s not as serious as it is.)

        But the science is moving. There’s pressure to address the changing science. So they also want to be able to say they’re on the job. They’re doing well.

        That leaves them rather uncomfortably straddling a line. And what you get is double-talk – Beth Unger says one thing to doctors and patients; something else when it comes to actual policy decisions; and something else entirely when it comes to changing what is on that website or what they send out as “physicians education” material. That’s why the appearance of confusion.

        I have to also say I am most disappointed in Nancy Klimas for making that easier for Unger. How? by publishing an article on “pacing” which she called CBT, and then another article on graded exercise that was her own version – which gives those who want to push CBT/GET the ammunition to say that she agrees with them. And then they use the Wessely-Sharpe-White-Chalder version. Say one thing to one group of people (this isn’t THAT type of CBT and GET), something else to a different group (yes, psychiatric therapy and graded exercise can help patients).

        I guess my conclusion is that an advocacy focussed on getting more funding out of NIH is correct. If I am hopeful about anything, it is the sudden appearance of NINDS on the CFSAC stage. After years of NIAID (which, run by Tony Fauci, perpetuated the theory that this was a somaticizing disorder), then in two different women’s offices, neither of which had funding, I’m interested in why NINDS [National Institute of Neurological Disorders and Stroke] finally sees themselves as relevant (given that CFS has always been coded to G93.3 in the chapter on neurology in ICD-10 internationally – though CFS is still stuck in R53.82 under vague signs and symptoms in ICD-10-CM) – well, it is an interesting change.

        The first time the new CFSCC met in the mid-1990s, my mother took me to Washington (because I was confined to a wheelchair and I needed her help) to the meeting. Bill Reeves got up and made a joke about “I’m finally going to agree with Tom Hennessy – I think this is caused by a virus” – and then said, “Just kidding, Tom.” Ha ha ha. My mother, at the time about 75 years old, said, “Did he just make a joke at the expense of a patient?” Yes, Mom, but we’re used to it. She looked down at the program in her lap, and then nudged me, “is this the guy speaking?” while pointing to Reeves’ name on the program: William Reeves, Division of Viruses and Exanthums, CDC. “Yep.” Then she asked The Big Question, “If he doesn’t think it has anything to do with viruses, why is he in charge of it?”

        That’s the big question. For some reason, we have ALWAYS been the property of a division of CDC concerned with viruses. It took my 75-year-old mother just a couple of minutes to see the contradiction.

        Whatever is going on at CDC, the CFS group does NOT proceed as if they have a serious medical epidemic on their hands – and they DO.

        I could really get behind a CDC educational program that said, basically, “we have discovered that the disease that was named CFS in 1988 is much more serious than previously portrayed. We need to work with the public to get people diagnosed and treated, now. And we are going to need the public’s health, because that’s an awful lot of people that we’ve left behind.”

        Sadly, the people currently involved at CDC CANNOT SAY THAT. They would have to stand up and admit they have failed for DECADES, and the cost of that failure is real and painful to people who are bedridden or housebound, to people who lost their careers, to people who never had careers, never had families, never got married, in some cases never had a sweetheart. It would take incredible courage for somebody already invested in the CDC’s current portrayal of our disease to stand up and tell the truth to the public.

        I don’t see it happening. The current program will have to be replaced with a completely different one, one without the burden of a history of trying to make the disease disappear.

        So be careful. When you go cheerleading for the “new” CDC approach to CFS – make sure that it really IS a new CDC approach, and on all levels. I don’t think so.

        • Cort Johnson says:

          Have you even looked at the educational video’s? Do you think Komaroff, Bateman, Lapp and Natelson got it all wrong. Are you actually going to use video’s featuring ME/CFS experts to slam the CDC????

          All they have to say teaches the public and the medical profession NOTHING about his disorder? How can you say that with a straight face? These are OUR professionals teaching doctors about ME/CFS!

          I don’t think you’re up on or particularly care about the CDC is doing now. I think you’re more interested in replaying old tapes and rehashing old wounds. You have zero interest in whether the CDC is benefiting the ME/CFS community now. That’s harsh, I know, but I don’t know how to conclude otherwise.

          The evidence for that is that you can find it easy to find sometimes obscure points (Dr. Unger and the development of the HPV vaccine for god’s sake) and terminology regarding the definition and can’t acknowledge the CDC when it moves forward.

          I would have thought that you would be jumping for joy when your doctor who has helped you so much and the treatments he used got included in the CDC study. That finally provides a possible pathway for the success you and others have had using immunotherapy to get out to the scientific community at large. But you don’t even seem to care about that. That I do not understand.

          By the way I didn’t say the Fukuda definition was the International definition. The ED was called the International Definition because it was prompted by work from an International team.

        • Jim Ellsworth says:

          Cort seemed to agree with your overall assessment about the CDC last November:
          http://simmaronresearch.com/2014/11/going-grassroots-dr-unger-cdcs-chronic-fatigue-syndrome-multisite-studies/

          “The last really interesting CDC study was a gynecologic study published in 2011. One ME/CFS expert bluntly told me “Don’t expect breakthroughs from the CDC – that’s not what they do”.”

          Later Cort informs us that the CDC has no idea when they will actually publish any research from the multi-site study. This is amazing incompetence. It’s even more amazing that nobody even seems to care.

          I can guarantee that folks on the Phoenix Rising forum are impatiently counting down the days until the expected release of Fluge and Mella’s phase III Rituxan trial. We even have a good idea when it will be finished, because the researchers have told us.

          Unlike CDC, the Norwegians are very open about their work and actually know what they are doing. Not to mention that their research will give us real answers about a potential treatment that exists today, not twenty years from now.

          About that gynecologic study – it’s quite unlikely that my illness was caused by common gynecologic problems – I just don’t have the ovaries.

  29. Cort Johnson says:

    Here is from Dr. Klimas on her last Patient Day. (I promise you that Dr. Peterson would say the same thing – he, someone who had nothing good to say about the CDC for decades – has told me that attitudes about the CDC in the patient really need to change.

    “As she talked about the Institute’s studies, Dr. Klimas urged some to reconsider their assumptions regarding the CDC. Calling the CDC’s ME/CFS experts study a “fantastic” study she said the CDC was getting a bad rap that it didn’t deserve. The expanded version of the study is going to expand its focus on groups that few research groups have attempted to reach: children with ME/CFS, people who are housebound and people who are just getting sick with ME/CFS.”

    Read more: Being Patient… and Excited: The Institute for Neuro Immune Medicine’s Patient Day http://www.cortjohnson.org/blog/2015/03/09/being-patient-excited-institute-neuro-immune-medicine/

  30. Mary Dimmock says:

    Leaving aside the budget issue for the moment…

    While I dont agree with every decision on the multi-site study and I am concerned if the Georgia data is being merged in, I think there will be value in what the multi-site study produces and I certainly support the researchers at those sites. My son’s doctor is one of those researchers and he has been in that study.

    But that does not mean that I give carte-blanche to CDC to move forward on the medical education front without questioning what is being done.

    No matter where we individually stand on the budget issue, I think we can probably all agree that the existing medical education- both at CDC and with secondary medical education providers – is a muddled mess of Fukuda, Empirical, and Oxford along with advice from the experts who treat the disease. This kind of ambiguous and confusing communication has been the primary source of the disbelief, stigma, misinformed doctors, and inappropriate and sometimes harmful treatment of patients that all of the recent government reports have noted.

    In order to unravel this mess, I think its essential that all future awareness and medical education efforts are very clear on what the disease is and what it is not. As written, the Biz Ops announcement raises red flags that I think CDC must address.

    For instance…
    – What scope of disease will CDC include in its public awareness campaign and medical education efforts? The set of conditions defined by Fukuda and Empirical? Or the neuroimmune disease with its mandatory symptoms like PEM as discussed in the IOM report, defined by the CCC/ME-ICC, and studied by our experts?

    – Will CDC’s medical education initiatives stop using evidence from the empirical and oxford definitions and explicitly tell doctors that those findings and recommendations (e.g. CBT, GET, child abuse history, etc) should not be applied to these patients?

    – What will CDC do about those Fukuda CFS patients who do not have mandatory symptoms like PEM? As the IOM report noted, they also need to be cared for but not as part of the same disease.

    – How will our disease experts and CFSAC be involved in specifying the medical education content? What level of approval will they have on that content?

    I think these are reasonable questions that CDC should be able to answer. I have reached out to try to get these answers but don’t have a response yet.

    We desperately need a good medical education and public awareness campaign. But it must be precisely targeted to the neuro-immune disease that patients have if we are to escape the skepticism, misunderstanding and mistreatment that are still harming patients today.

    Regardless of where you stand on the budget issue, I’d ask that you also seek clarity on what is being done with future medical education and public awareness campaigns.

    • Cort Johnson says:

      This is why I don’t think there’s much of an attempt at objective advocacy. If you’re going to mention the Empirical definition in connection with the child abuse studies you also have to mention it with regard to the other studies it has been involved – the natural killer cell, innate immune, gynecological and cortisol studies – all of which were positive, good studies. You’d have to throw them all out if you’re going to throw out the child abuse studies.

      This is a good question – How will our disease experts and CFSAC be involved in specifying the medical education content? But the way it is posed suggests the CDC has something to hide.

      If you look at past education efforts, however, you would strongly suspect the CDC will follow the lead of the ME/CFS professionals involved in the project because that’s what they’ve done in the past. Why would you think they would do differently now?

      • Cort.

        You are mixing things up.

        By definition, a bad data set is a bad data set. The kind of data set that the Wessely questionnaires creates – and the Reeves “empirical” definition (which was modeled after Wessely’s) is what we used to call in statistical research a “cooked” data set – baked to look like you want it to look. In Wessely’s case, the Oxford definition creates data sets that mainly consist of patients with primary depression and anxiety.

        Lenny Jason showed that the Reeves’ questionnaires produced data sets heavy on patients who did NOT meet the Fukuda definition for “CFS”, and pulled in, instead, patients with primary depression and anxiety.

        What gets called either the Georgia or Atlanta study was conducted using the Reeves empirical definition, i.e., the Reeves questionnaires that Lenny studied. (I did, too. – see my blog post:
        http://slightlyalive.blogspot.com/2010/02/cdc-research-on-cfs-open-deception.html

        I can’t say I agree with your distaste for history – since it was my profession – but that Reeves created the empirical definition in the past, and he’s now dead, that doesn’t make it less toxic. It doesn’t make it any better.

        ANY data set created USING the Reeves questionnaires is going to do what Lenny says it does: pull in patients with primary psychiatric disorders (who do not meet the Fukuda definition, which Reeves falsely claimed to be “operationalized” by his questionnaires) and omit the most serious patients with a diagnosis of ME or CFS.

        ANY data set.

        Fortunately, few people have used the Reeves questionnaires in research. But CDC did. That is how they created the Georgia/Atlanta data set.

        Now, if there are enough patients in enough projects – and the projects are identified within the larger data set so that if the Atlanta data set will kick out weird when they run their model – it won’t harm the project to have included them.

        But it is my experience from the Ampligen double-blind trials, where people were included who never should have been because they did not use any objective tests, folding in the wrong patients can substantially bring down your results. I believe it is the reason that the Ampligen results showed only a weakly positive (albeit statistically significant) increase in function.

        Thus my concern.

        • cort says:

          The ED is not actually as bad as you think. I’ll show you how Jason’s data shows you that in a blog coming up.

          • Jennie Spotila says:

            But Cort, wasn’t it Lenny’s work that DISCREDITED the Empirical definition?

            http://www.scirp.org/journal/PaperInformation.aspx?PaperID=1622

          • Cort Johnson says:

            It’s a complex subject. Some of his work discredited; other studies found it was not as bad as suggested…

          • Cort Johnson says:

            If Denise looks further she’ll find that the CCC did only marginally better than the ED.

          • matina says:

            That is why we need an accurate case definition and final name.. as stated by P2P

            The panel also concluded that the ME/CFS research, medical, and patient communities must establish a standard case definition in order to better understand the disease and to accelerate the development of new diagnostic and prognostic tools. To promote advances in ME/CFS treatment, the panel recommended creating a network of collaborative, multidisciplinary centers and developing public-private partnerships to help fund and advance research.

            o address these knowledge gaps, the panel is calling for more research and more opportunities for new investigators to invigorate the field. The panel also recommended maintaining biological samples (e.g., serum, whole blood, RNA, DNA) in a repository to support studies on biomarker discovery. Additionally, the panel recommended providing education and training to health care providers about the diagnosis and treatment of ME/CFS.

            The panel also concluded that the ME/CFS research, medical, and patient communities must establish a standard case definition in order to better understand the disease and to accelerate the development of new diagnostic and prognostic tools. To promote advances in ME/CFS treatment, the panel recommended creating a network of collaborative, multidisciplinary centers and developing public-private partnerships to help fund and advance research.

            Therefore; I still want funds from our gov’t. At the same time, they need to stop what their doing and listen to our experts, the P2P report and learning from the IOM and patient community. If you want to attract pharma and have a treatment in the near future…we need a CASE DEFINITON by consensus of all parties with a name.

            When will the multisite study be completed? This will be very interesting on how they are going to compare the data to help address the CFS case definition. Does anyone have the primary objectives and secondary objectives of this study and their methodology? What is their clinical protocol: Clinical trial protocols should include a clear description of trial design and patient selection criteria as well as description of clinical procedures, laboratory tests, and all measures to be taken to monitor the effects of the drug – but the same applies when you are doing any type of medical research to ensure validity.

          • Denise says:

            Lenny is changing his mind on the empirical definition?
            The one he said (among other things) this about “When comparing the overall Reeves et al. criteria, only about 65% of true CFS cases were identified. In other words, these criteria are not able to identify an acceptable high percentage of individuals who have this illness.
            If samples of CFS are not identified with sensitivity and specificity, it will be difficult to compare samples from different studies, and the search for biological markers will be compromised.”
            in this article Sensitivity and Specificity of the CDC Empirical
            Chronic Fatigue Syndrome Case Definition
            http://www.scirp.org/journal/PaperInformation.aspx?PaperID=1622

          • Cort Johnson says:

            I’m not saying the empirical definition should be retained – it’s not going to be retained, it and I believe, all the other definitions are going to be replaced, hopefully sooner rather than later, by a statistically derived definition.

            If you look at the ED very pragmatically; i.e. what effect its had on the studies it’s been used in, though, it hasn’t turned out to be the horror that we all thought it would be. Some of the Reeves psych studies the CDC did use it I’m sure but all the rest of the studies have turned about like you might have thought.

            The gynecological studies were done using both the Fukuda and the ED definition I believe — they had similar results. The latest immune studies highlighted complement genes – which showed up in the early exercise study which used Fukuda. The heart rate variability findings in sleep which have now been validated using the Fukuda definition I believe used the ED criteria. The natural killer study found some evidence that high methylation rates were effecting perforin functioning. Increased glutaminergic activation makes perfect sense given what we know of ME/CFS..

            The point is that from a purely pragmatic standpoint, there’s no evidence that I can tell from the studies that the ED has hurt us that much.

  31. billie moore says:

    Thank you, Mary Schweitzer, for that overview of the CDC. Your conclusions are flawless, IMO. One point I think is very telling in just how intransigent the CDC is in its position (and this is definitely Beth Unger) supporting the use of Fukuda. There is much criticism about Fukuda, so the answer is – keep it but change it to “International Criteria”! Nice sleight of hand, CDC! Fukuda by any other name is still Fukuda, but doesn’t that muddy the criteria waters for those who are not extremely familiar with the different criteria?! The 2011 criteria is named “International Consensus Criteria” and is significantly different from Fukuda. The CDC has just preempted that, however. And you are telling me, Cort, that they are on our side? The CDC is on its own side, doing what IT wants, not what patients want and need. Accurate education for doctors does not start with the Fukuda definition, CBT and GET and other misleading information.

    This discussion is provocative and enlightening. One of its side effects might be to show the CDC that we are not buying what they are selling – haven’t for a long time – and that as a result at least some of us in this community do not quake in fear at the thought that they will lose funding for “CFS” studies. That might be a new idea to them in that division.

  32. Bob says:

    I think this is a healthy discussion to be having within our community. I’m sympathetic to all the points of views expressed, but I absolutely agree with Cort Johnson that we need to look forwards and not backwards, and to assess the research program that the CDC is currently undertaking. And I believe that our community cannot afford to lose the multi-site program.

    The multi-site study is huge, and probably the biggest research program ever carried out into ME/CFS anywhere in the world. It’s a combination of an epidemiology study, with a large and complex biomedical study, and it has vast potential to inform us about ME/CFS. We’ve needed this for years, and it’s what the CDC should have done 30 years ago. It’s not perfect, but it will be a really important study, and something to build on. Is this really the time to be stopping CDC funding, just after they’ve implemented this?

    I think we should give Dr Unger credit for what she has put into place, rather than only criticising what she hasn’t yet changed.

    The CDC’s ME/CFS program has changed dramatically since Dr Beth Unger took over. If we look at their current research program, as Cort has outlined, rather than their promotional material, I find it almost impossible to criticise it. The promotional material is important, and they need to change it.

    I believe that Dr Unger will follow her evidence, which is what she has said she will do, but it will take her years (from the start of her program) until she collates her own evidence that she is comfortable to use to make visible changes to the CDC’s recommendations to ME/CFS. We can’t expect her to change everything within the first couple of years or her tenure, even if we’d like her to. Some of us might find her approach too restrained, and not radical enough, but i’d rather have a good scientist directing a good biomedical and epidemiological research program, thoroughly, than a sloppy scientist who cannot plan or instigate long-term research objectives. I believe that the CDC’s ME/CFS research program was reset by Dr Unger, and I think we must give it a chance to come to fruition.

    The 2016 fiscal year request from the CDC for ME/CFS is $5.412m, and congress have drawn a line through it, possibly because they consider ‘fatigue’ to be unimportant, because “only lazy people suffer from fatigue, and it’s obviously not a dangerous virus or anything like that”. (I imagine that’s how the thinking might have gone in congress.)

    Apart from anything else, it’s frustrating that Congress is singling out our community for this treatment, and i don’t believe that we shouldn’t be letting them get away with it. In my opinion, we should be indignantly fighting against this as a matter of principal. Do we really want to just sick back and let this happen? Do we want them to pull the plug on the biggest ME/CFS research program ever commissioned, just after it’s got started? This is a good chance to lobby congress for a specific outcome that congress members can easily respond to and achieve on our behalf. (And congress-people like to have easy specific outcomes that they can easily achieve so they demonstrate that they are doing something useful.) This is a chance to educate congress about ME/CFS.

    Looking at the CDC’s two latest ME/CFS research papers, this is exactly the sort of biomedical research that we need and it’s not being done anywhere else. It does unfortunately use the empirical definition (The Georgia cohort), but even so, i can’t critique the direction of travel. It’s exactly the direction of travel that we want, and it’s exactly the approach to investigating ME/CFS that we all want:

    Prediction of complex human diseases from pathway-focused candidate markers by joint estimation of marker effects: case of chronic fatigue syndrome
    Bhattacharjee M, Rajeevan MS, Sillanpää MJ
    11 June 2015 [Epub ahead of print]
    Hum Genomics 9:8.
    http://www.ncbi.nlm.nih.gov/pubmed/26063326
    http://www.humgenomics.com/content/9/1/8/abstract

    Pathway-focused genetic evaluation of immune and inflammation related genes with chronic fatigue syndrome
    Mangalathu S. Rajeevan, , Irina Dimulescu, Janna Murray, Virginia R. Falkenberg, Elizabeth R. Unger
    Available online 24 June 2015
    Human Immunology
    doi:10.1016/j.humimm.2015.06.014
    http://www.sciencedirect.com/science/article/pii/S0198885915001809

    • Mary Dimmock says:

      Bob,

      Patient selection is everything. If you dont know who the patients are, you dont know what you are researching and you dont know what your findings mean. The empirical definition has been broadly rejected as flawed; most recently, by the IOM, which said that it “resulted in a biased sample with overrepresentation of individuals with depression and posttraumatic stress disorder.”

      I appreciate that the approaches and techniques might be interesting but studies on poorly characterized patient populations only further muddy the water and are too readily applied to all patients as was done in the AHRQ Evidence Review.

      • Bob says:

        Hi Mary,

        Yes, I agree that patient selection is everything. (Except that, if large enough studies are carried out, then subgroups can be investigated, in which case the selection criteria isn’t so important.) I was highlighting the direction of travel at the CDC, and the type of research that they are now involved in. If you look at the two research papers that I highlighted above, they are a million miles away from what has gone on at the CDC in the past. I confess that the research is too specialised for me to understand much of its potential, but it is real biomedical research – it’s a sincere investigation of the biomedical mechanics of ME/CFS – exactly the sort of research that we want. I think, along with the multi-site study, it indicates a transformation at the CDC under Dr Unger.

        And, as others have said, it’s quite possible that all of the US government agencies will officially adopt the IOM report (and the SEID criteria) within the next year.

        Personally, I think the CDC is moving in the right direction under Dr Unger’s leadership, but they have a very long way to go. Yes, I am frustrated by their lack of movement with respect to certain issues, but the multi-site study is huge and will likely have huge implications for our illness. And the selection for that study, is carried out by the clinicians involved, and patients will be sub-grouped by various characteristics, such is the size of the study. The sub-grouping will be an essential part of the study. So the patient cohort will not be based on the empirical definition. Instead, it will be a complex study that allows sophisticated subgrouping, which is exactly what we need.

        The multi-site study has such huge potential, and has been praised by the clinicians involved, that it seems like really bad timing to undermine the CDC’s ME/CFS program right now. How are we ever going to get this essential data if the CDC don’t get it? I can’t emphasise enough what a huge and transformative study the multi-site study has the potential to be. As Cort says, it’s investigating quite a wide range of biomedical aspects of ME/CFS, including post-exertional effects, and Dr Unger has plans to build upon the initial database with further investigations rolling into the future. This will be a huge and important database for us, now and in the future. And if the CDC don’t get this data, we will never have it.

        • Mary Dimmock says:

          I disagree that if the study is large enough, the case definition is not as important. Determining subtypes assumes that you are looking at a single disease or a group of closely related diseases to begin with.

          Like Oxford, the empirical mixes together an indeterminate mix of disparate diseases – as the IOM points out, depression and post-traumatic stress disorder but who knows what mix of other causes of chronic fatigue for which there was no explanation. There’s a reason why the new Rituxan studies are using the CCC.

          But the primary point that I was making is on the public awareness/medical education program and what disease it is intended to address. There are legitimate questions there that should be addressed separate from the multi-site program.

        • matina nicholson says:

          HI bob:

          I am strongly against our gov’t adopting the IOM diagnosis Criteria and the name SEID! I stand behind Lenny Jason and his comments. And have already reached out to CFSAC on this as well as the CDC, NIH, and HHS and Sec. Burwell and wrote senators.

          The IOM is a great platform as will as the Canadian Consensus Criteriea…for all the experts to define come to a consensus of a name and case definition for diagnosis and research with the patient community input!

          It terms of the multi-study having huge potential is when the clinical protocol is constructed in the beginning to ensure statistical analysis/power to ensure the objective(s) of the study will be met- it can’t be an after thought or used with case definition that met the criteria of ME not CFS.
          eveyone will be happy that this will be my last comment bc I am going to focus on writing to experts and the powers to be bc they know the concerns (bc I have talked to them about it…and you I laugh bc they try to give me the PR bullsh*t…and thank god I can talk their clinical language (when my ME brain will let me) and I see them tyring hard to find an answer that will hopefully satisfy me..which is usually not..or they state..Matina..if we have more $ than we could do it in that manner.. However, this is what we can do now with the monies..And I will stop there.. and focus on rest and no more comments from me.

          every one has a right to their opinion. and I can’t write good so no disrespect to any one. Its just our time to have the funds and research done accurately so we all can have are lives back sooner than later. WE will never see change with things going in the direction they are at this time.

        • Denise says:

          “Except that, if large enough studies are carried out, then subgroups can be investigated…. ”
          Large enough trials without careful attention to patient characterization?
          This almost like the Pace Trial.

          • Bob says:

            Denise said: “Large enough trials without careful attention to patient characterization? This almost like the Pace Trial.”

            I’m not sure what you’re referring to, exactly, Denise. But if you’d read about the multi-site study, then you’d know that the central feature of the study is its ambition to pay careful attention to unprecedented detail and the aim to carry out unprecedented patient stratification. That’s partly why it has the potential to be such a ground-breaking study.

          • Cort Johnson says:

            Denise is equating the multi-site project to the PACE trial? Now I’m really losing hope.

            There’s a fundamental misunderstanding about this study. The study is looking at what kinds of patients show up in ME/CFS experts office. Because it was designed to look at the patients ME/CFS experts considered to be patients it could never have required that a definition be met beforehand It presupposes nothing about the patients – except that the doctors believe that they are ME/CFS patients.

            That might be too loosey goosey for some people but it’s fine for me. I think these doctors know what an ME/CFS patient looks like.

            After it gets the data it can determine who met what criteria. Maybe Dr. Peterson’s patients will more often meet the CCC criteria? Maybe fewer of Dr. Natelson’s will. Maybe everyone’s patients will meet it (my guess). The filter comes after not before.

            The definition question is soon going to moot anyway. A new definition will be decided. When that happens all the other definition will become obsolete and fade away. The only question next will be how to improve the new definition.

      • matina says:

        I agree with Mary dimmock. Just look where we are in research…baby steps from the past 15 years. If we had an accurate case definition & a clinical protocol for determine subsets – we would not be in this situation!

        If I did these kinds of studies in the pharma world! The FDA would spit it out! Plus most of my studies would fail or thank god my researchers in the companies that I worked for would refute any type of study design even me “as a marketer” or CDC telling them to do it..they would refuse!

        If we want to stop the baby steps and start finding answers in the next 10 years, Patients and EXPERTS need to put their foot down and stop everything and confirm NAME with accurate case definition (diagnosis & research) without HHS holding a gun to their head and than get HHS to fund us $250 or much more and develop a strategic plan to undo the chaos that has been done in the last 30 yrs!

        Hello! HIV and AIDS only had to wait 5+ years and they demanded their needs not baby steps! HHS did what the expert and patient community requested!

        many patients don’t have the luxury to see our ME/CFS experts or get ampligen or try an off label drug due to financial issues or other reasons.

        It is a nightmare for many patients to get diagnosed or treated! Believe me, I been thru the ringer trying to find a primary care doctor in my area to team up with my ME expert – and even with my knowledge, I get dismissed or you try CBT or GET per the CDC! It this is recently. So, until you open your minds and you would like to be in the same place 10 yrs from now. Support CDC and NIH all you want. Because I will be kicking and screaming for the opposite bc my window of time for treament is closing and I am sure NOT going to live another 10 years mostly a prisoner of my room without making noise!
        I don’t understand how some don’t see the harm the the current case definitions are doing and the education? didn’t you see the majority of the media of the IOM report get it wrong..did you see any giants leaps or bounds or any better treatment by main stream docs..NO! more confusion! Why don’t you take some time and research the strategic plan that they put in place for HIV or the current ones they have. look at the NIH strategic plans for other diseases. Our disease doesn’t have a chance with action items put in place- unless you want to wait another 15 years. And let children and the severe ME patients suffer longer than they need too!

      • Cort Johnson says:

        The study is about the types of patients ME/CFS physicians see – not the types of CCC criteria patients they see.

        And yes, patient selection is everything. That’s why the multi-site study employs the best “patient selectors” on the planet” – doctors with decades of experience treating people with ME/CFS. Do you really believe that non-ME/CFS patients are going to get into these studies?

        There’s nothing to stop the study from determining which patients in the study fit which criteria. I would be surprised if they didn’t do that.

        If the other doctors in the study are anything like Dr. Peterson I imagine that they selected the most typical ME/CFS patients to be in the study. I imagine that they also tended to pick the sicker patients to be in the study. Peterson goes to some lengths for instance, to make sure that Corinne Blandino is in all the studies he can get her in.

        Dr. Peterson had this to say about the patients in this study.

        “The CDC’s clinical assessment study is pivotal to patients with CFS/ME. It allows CFS clinicians to analyze our ‘classic’ patients for commonalities, subset distinctions and biological markers in a collaborative manner.”

    • Jim Ellsworth says:

      “I believe that Dr Unger will follow her evidence, … but it will take her years (from the start of her program) until she collates her own evidence that she is comfortable to use to make visible changes to the CDC’s recommendations to ME/CFS.

      We don’t have years to wait for these people to get serious. Many of us will be dead before then. One vital reason patient advocacy is so disjointed is that by the time a patient understands how Our Dear Leaders have been sticking it to us for 30 years, they are too sick to do any advocacy.

  33. Janine says:

    I am not a data analyst expert, but it seems like a poor decision to purposely ignore all standard case definitions to select who will be a CDC study participant. GIGO (garbage in – garbage out)

    http://www.cdc.gov/cfs/programs/clinical-assessment/faq.html

    “What case definition was used for determining CFS cases?
    No specific case definition was used. Any patient (aged 18 – 70 years) that is managed or diagnosed with CFS, post-infective fatigue (PIF) or myalgic encephalomyelitis (ME) at any of the seven participating clinical sites is eligible for participation in this study. Clinicians from each participating clinical site will determine whether a patient has CFS based on their clinical experience and expertise in CFS.

    Why wasn’t the Canadian case definition used for enrollment?
    The goal of the study was to collect standardized data to characterize the illness as managed by clinical experts. This data can then be used to evaluate the strengths and weaknesses of current case definitions and determine refinements or additions of sub-groups for both clinical and research work.”

    • Cort Johnson says:

      Because the study’s purpose was to determine what kinds of ME/CFS patients the expert physicians were seeing. That included finding out how each expert determine what an ME/CFS patient was.

      If they had required a certain definition to be fulfilled that would have been at odds with the purpose of the study.

  34. Jennie Spotila says:

    Doesn’t anyone want to know WHY the Senate committee made this recommendation in this report? Doesn’t that matter in making strategic choices about advocacy? Make connections, draw dotted lines, try and see the pieces on the board and how/why they’re moving- and at whose behest.

    • janine says:

      Hi Jennie, Could you please send me a link to the report?

    • Carrie says:

      Absolutely, yes! Thank you for saying it!!!

    • janine says:

      found the link

    • weyland says:

      Yes, this is what I want to know, rather than knee jerk reacting to it with letters and petitions and conspiracy theories. We need all the data. Why are they doing this? What is the CDC’s position in this? What are they doing about it, or did they recommend it?

      I was working on drafting a letter to the CDC to ask their side of this, but if you have some further details I’d love to hear them.

  35. cort johnson says:

    “Fourth, we don’t know why the Senate committee report declined to recommend funding. ” – do we now know why?

  36. Jennie Spotila says:

    I have allowed this conversation to be quite vigorous because I believe the issues are so important. However, I think it’s time for a blanket reminder about my Blog Policies:

    http://occupyme.net/comment-policies/

  37. This may seem contrarian, but after thinking about it, while I still do not trust CDC’s CFS group any further than I could throw Lake Tahoe … I did have to protest the budget cut recommendation. It is yet another sign that the government has no respect for our disease, no understanding of the numbers, the severity, the cost, the anguish.

    So, I have just sent a letter to the budget committee and my Congressional representatives expressing distress that they would choose THIS to cut, when it is horribly inadequate to begin with.

    Doesn’t mean I’m going soft on CDC. Just not happy with Congress at the moment, either.

    • Jen B says:

      Mary, that’s exactly the conclusion I have come to.

      A friend of the Dafoe-Davis family started a petition for Whitney Dafoe and CDC funding: https://www.facebook.com/MEActNet/posts/1634548746827525 There were several comments relating to the idea that given the CDC’s track record, this wasn’t such a bad thing.

      My response:

      It’s a tricky thing because the cut tells you something very important about not only where we are in the minds of our representatives but also the lack of a strong lobby. I think zero response is problematic.

      As an alternative to “give us the money back” I could almost imagine a petition or a campaign of folks articulating why they think the CDC has used that money problematically in the past. Some options for the ask or then a) restore with standards or b) give to the NIH for extramural research c) thank you for removing the $$ so CDC can do no harm.

      I don’t know what the best strategy is but I worry about the signal a non-response would send: we don’t care, we are not a constituency.

      Just so you know, as far as these conversations go, #MEAction is aiming to be a big tent. We have a restore funding campaign going up on the site soon from Solve ME/CFS but are also going to highlight some of the issues raised in the body and the comment sections of this blog post. If anyone would like to suggest or initiate a different strategy/message from “restore funding,” we’d be happy to help either get the word out or figure out how to support the endeavor.

      For my part I agree that the NIH has got to be the focus of the majority of our energy.

      • Bob Miller says:

        Jen, The Non Response is why the Funds have been set to be removed…It is why Patients Need to Email the Senate staff and their own Senators Now… We can Not afford to go Backwards.

        Best to You!

      • Cort Johnson says:

        Thanks Jen – This is the critical point. Whether you like the CDC or dislike the CDC – we cannot allow — particularly at this point – anything like this to go forward. How can we move forward anywhere if we just allow them to cut funding like this ???

        • Janelle says:

          I agree with that. We have to say something. (And I did: I emailed and called both my Senators.)

  38. Nonresponse? Nonresponse? Nonsense!!

    I didn’t know about this until Jennie wrote it up on Tuesday and somebody happened to post a reference to her blog.

    I still have received nothing about it from any advocacy organization OR, for that matter, anybody who should have been told about this, at least privately, by Dr. Unger.

    It’s sheer luck that there will be a response – and, frankly, you have Jennie to thank for it. But she should not have had to be the one who pointed it out!!

  39. Bob says:

    Hi Jennie, I want to say thank-you for highlighting this issue on your blog, and providing all of the info and links. It’s exceptionally helpful. I hadn’t heard anything about this before you blogged about it, and it was a surprise to say the least. Our community seems to have been a bit slow to pick up on this.

    I’m not surprised that you and others are indifferent (at best) about the CDC. I would be indifferent as well, if it wasn’t for the multi-site study.

    This has been a heated debate, with passions raised, which isn’t a surprise. As usual, we’re all on the same side, but we have slightly different ideas about the best way to reach the best outcomes. If our community hadn’t suffered from decades of neglect and abuse via govt authorities and the medical establishment, we wouldn’t have to have these debates. i.e. if we felt that we could trust the government authorities, then we’d all be seeking to get them fully funded, without question.

  40. Bob says:

    I’d very much like to know why the Senate has struck out the CFS funding. Is it correct that we don’t have any info about this as yet? I’ve skimmed through the congressional documents but cannot find any reasons given.

  41. Bob says:

    Since Dr Unger has taken charge, I believe there has been welcome change at the CDC. I’d go as far to say that she has overseen a transformation, as borne out by the current research program, and the research studies that have been published over the past year or two. But I know that not everyone agrees with this, and many of us feel frustrated by her intransigence re certain issues.

    I’d be personally quite devastated if the multi-site study was cancelled; I believe this huge, unparalleled, and ground-breaking research program offers one of those rare small glimmers of hope that keep us going on a personal level. I believe that the multi-site study will have the power to transform our understanding of ME, and it may lead to many new insights into the illness. I totally understand why so many folk do not trust the CDC, but I do ask everyone to reflect on whether we want this major research program abandoned.

    Patients in the multi-site study will be stratified according to all the various diagnostic criteria. It would be a waste of time if such stratification wasn’t done. But the research data will also be powerful enough to stratify patients according to other criteria, such as sudden onset vs gradual onset, or flu-like symptoms vs POTS, and many other criteria. This is far more powerful than separating the patients via a single set of consensus criteria alone; Criteria which do not have a huge amount of scientific validation. (The consensus criteria are useful, but they aren’t the be-all-and-end-all. We still need a huge amount of scientific investigation.) The study is large enough to carry out analyses according to many criteria, but not limited to specific criteria. This has the potential to give us new information. i.e. it can answer questions such as: Do patients with pronounced POTS have the same biological (e.g. genetic) post-exertional response as patients with pronounced neurological symptoms or brain fog?

    In relation to the mutli-site study, the CDC website says the following of the diagnostic criteria: “The goal of the study was to collect standardized data to characterize the illness as managed by clinical experts. This data can then be used to evaluate the strengths and weaknesses of current case definitions and determine refinements or additions of sub-groups for both clinical and research work.”
    http://www.cdc.gov/cfs/programs/clinical-assessment/faq.html

    If anyone hasn’t read up about the multi-site research program, I do urge you to. There are a few blogs that have been written about it, including the following:
    http://simmaronresearch.com/2014/11/going-grassroots-dr-unger-cdcs-chronic-fatigue-syndrome-multisite-studies/
    http://phoenixrising.me/archives/22889

    Below, are some of the current or proposed objective tests to be carried out in the study. But this list is more than a year old, and more has been added since. It’s a program that is being consistently added to and built upon. I can’t remember all the details – I think Cort Johnson has listed more in the posts above…

    Test to be included…
    – One-day maximal cardiopulmonary exercise testing (CPET); with 48 hour post-exercise online cognitive testing (and also pain and symptom questionnaires) to attempt to identify post-exertional changes.
    – Natural Killer (NK) cell function and counts; sample for serum archive.
    – Blood sampling for gene expression changes.
    – Saliva to measure morning (wakening) cortisol response
    – Blood samples to create a small bio-repository of DNA and RNA that could be used to replicate promising findings from other groups.

  42. Anne Ö says:

    Many of us HAVE written to the CDC. I’ve given it my best in an attempt to ask Dr Unger to 1) state that PEM is the cardinal symptom of ME/CFS and needs to be a required symptom in the case definition/criteria for ME/CFS and 2) create a large-scale study of the 2-day CPET test (since they chose not to include this in their plans for the multisite study).

    Dr Unger has expressed a strong opinion against PEM as a mandatory symptom for ME/CFS. You can read the e-mail exchange below:

    E-mail from Dr Unger, July 24, 2014:

    I will try to clarify my comments regarding post-exertional malaise (PEM) and chronic fatigue syndrome (CFS) from the June 2014 CFSAC meeting.

    I agree that PEM is a characteristic feature of CFS that should be retained in the case definition. Difficulties in measuring or determining the presence of PEM do not detract from its importance. Clinicians need to recognize the importance of asking their patients about their responses to physical and cognitive stress, i.e. eliciting a history of PEM, because of the impact of PEM on disease management. Through this dialogue patients can be helped by learning to adjust their activity level to fit the limits imposed by the illness to avoid or minimize PEM. Emphasizing PEM in this way, to improve care of CFS patients, can be done without making PEM a requirement for diagnosing CFS.

    Retaining PEM as one part of the case definition is very different from making it a requirement for diagnosis. I remain concerned that there are no validated or standardized approaches to identifying or quantifying PEM. Lack of a systematic way to evaluate PEM may introduce additional barriers to recognition of CFS and delivery of appropriate health care. The 2-day exercise test, which has shown promise in research settings, would be difficult to apply in routine clinical practice. Requiring all potential CFS patients to undergo such an expensive and difficult task would not be in the best interest of assuring compassionate and high-quality care from the medical community at large. CDC places improved healthcare for CFS patients as one of its top goals. We want to empower health care providers to feel comfortable with how they diagnose and manage CFS.

    We are committed to continuing to work with the CFS community to develop solutions to this problem.

    Best wishes,
    Beth

    My reply (after which I didn’t hear from Dr Unger again):

    Dear Dr Unger,

    Thank you very much for your reply to my e-mail a few months ago. It has been on my mind ever since, and today I am writing to you straight from my heart – I hope you will have the time to read this e-mail and choose to give it careful consideration.

    Hope is running very short in the ME/CFS community. It is very hard for us – all of us massively suffering ME patients – to find the strength we need to keep going when we are continuously hit by news of problematic developments, instead of hopeful reports. The AHRQ report, the P2P process, the lack of follow-up of almost all the CFSAC recommendations, the continuing lack of funding for biomedical ME/CFS research (with even Prof Lipkin’s applications being rejected), the CBT/GET school… You are aware of all of this, and the implications it has on our already very burdened lives.

    In all of this, we look to the CDC and to the multisite studies, which have the potential to provide us with at least some hope. There are many hopeful parts. But I, along with the rest of the ME/CFS community as well as many ME/CFS experts, continue to feel that there is a great discrepancy between how we view the disease entity ME/CFS and how you and your CDC colleagues choose to view it.

    According to your e-mail reply to me, and to the latest blog by Cort Johnson, you continue to see Post-Exertional Malaise as a part of ME/CFS, but not as the cardinal symptom – the latter would mean making it a required symptom in the definition.

    I am begging you and your colleagues at CDC to re-think this position, since it is contrary to both the medical ME/CFS experts’ view on ME/CFS and the collective patient experience.

    As you know, ME/CFS experts and patients stand united in the view that Post-Exertional Malaise is the cardinal symptom of ME/CFS. 50 experts have stated this in their letter to the Secretary of Health and a large number of advocates and organizations have stated this in their letter to you. It is also clearly shown by the fact that the group creating the CCC included PEM as a mandatory symptom, and the IACFS/ME has chosen to base their primer on the CCC. In the primer, the IACFS/ME write: “The key feature of the syndrome, post-exertional malaise, is the exacerbation of symptoms following minimal physical or mental activity, which can persist for hours, days or even weeks.” In their letter to the Secretary of Health, the 50 experts wrote: “Unlike the Fukuda definition, the more up-to-date CCC incorporates the extensive scientific knowledge gained from decades of research. For example, the CCC requires the symptom of post-exertional malaise (PEM), which researchers, clinicians, and patients consider a hallmark of the disease, and which is not a mandatory symptom under the Fukuda definition.”

    I know that you and your colleagues are highly competent professionals, but, for all your experience, you do not have neither the clinical experience of the ME/CFS experts who have seen hundreds of ME/CFS patients, nor the human experience of us patients, who are experiencing the symptoms of ME/CFS in our own bodies every minute of every day, decade after decade. We are trying to convey to you that the cardinal symptom of our illness is not fatigue, but post-exertional crashes and exacerbation of all of our symptoms. (In Sweden, 20 ME/CFS patients even wrote a book titled “Fatigue is the Wrong Word”. You can read an English version of my chapter here.) The ME/CFS experts are making the same statement, over and over again. Please, please listen.

    I understand that PEM is difficult to measure, but logically the level of difficulty in measuring a certain symptom could never be determinative of its inclusion as a mandatory symptom in a case definition, right? Naturally, definitions have to be based on the actual manifestation of the illness. The actual cardinal symptom cannot be excluded only because, at this point in time, it is difficult to measure. Since PEM is the cardinal symptom of ME/CFS, if we use a definition where it’s not mandatory, we’re not in all cases defining ME/CFS, we’re defining something else. Instead, the lack of a current objective measurement of PEM speaks to the need to urgently develop a reliable method for this.

    I am sure you and your colleagues at the CDC want to respect the knowledge of these ME/CFS experts as well as the hard-earned experience of the patients. I am sure you want to give us a ray of hope among all the dark news we are encountering month by month. I want to ask you two things, both of which have been highlighted before:

    1. Please join the experts and patients in stating that PEM is the cardinal symptom of ME/CFS and needs to be a required symptom in the case definition/criteria for ME/CFS.

    2. Please create a large-scale study of the 2-day CPET test (Stevens Protocol). As shown by the earlier studies, a 1-day test is not a reliable measure of the aerobic capacity in ME/CFS patients. The dysfunctions show up on day 2. Since so little funding is available for ME/CFS researchers, the much-needed large-scale study of the promising 2-day CPET test in ME/CFS patients hasn’t happened, and these findings seem to become yet another promising lead which is never followed-up upon due to the staggering lack of funding. The CDC multisite study is a golden opportunity to change that. Please reconsider, and if the test protocols can’t be changed at this point, please create a sub-study with 2-day testing at one or two of the sites, or find another way of bringing a large-scale 2-day CPET test study about.

    I write to you with this plea from my head and from my heart.

    From my head: Before I had to quit my job due to my ME/CFS, I was a consultant in CSR/management. On of the main tools we used with our clients (corporations, federal authorities, other organizations) was stakeholder dialogue. I can clearly see that earnest, regular stakeholder dialogue is sorely needed between HHS, NIH, CDC and both the medical ME/CFS experts and the patient community.

    From my heart: I am despairing. I despair for my own healh, steadily deteriorating. I despair for those of my ME friends who are even more severely ill than I am, bound to their beds, lying in dark rooms, year after year. I despair for the entire ME community which, again and again, is hit so hard by so little understanding and cooperation from the HHS and the federal authorities. I understand you can’t change all this, but you can help us a lot by the two things mentioned above. They would inspire a lot of hope and faith at a time when it is much, much needed.

    Please, help us with these two things.

    Kind regards,
    Anne Örtegren

    • Carrie says:

      Excellent letter, Anne. Thank you for sharing.

    • Floydguy says:

      I agree with Unger’s comments. As a former patient of Komaroff I believe he would agree as well. Until a PEM test can easily be executed in a clinical setting it shouldn’t be mandatory. And then there is the problem of people refusing to take the Stevens test due to fears of permanent harm.

      IMO what should be examined in its place is autonomic dysfunction. This can and should be closely examined in every potential “SEID” patient.

      At some point, a stake has to be put in the ground as to what defines this condition. If it’s the Stevens protocol great. But everyone has to live with the fact that they be required to go through this testing to get the DX. Otherwise they should be put in an undiagnosed bin or chronic fatigue bin.

      • Anne Ö says:

        But having PEM as a mandatory symptom is not equivalent of requiring the Stevens Protocol for diagnosis!

        There are many symptoms for which diagnostic tests do not exist. Fatigue, for one! This has not stopped it from being mandatory in CDC definitions.

        Nor is there an objective way to measure headaches, but we still need a definition for migraine.

        Definition must of course mirror what the main symptoms of the disease are, not what can currently be objectively measured. Many conditions have symptoms which are subjective, and therefore the medical and scientific community has developed validated questionnaires and scales for capturing that symptom.

        The fact that there isn’t yet a validated questionnaire for PEM (as there is for fatigue) is no reason not to make PEM, the key characteristic of ME/CFS according to IOM and IACFS/ME, a mandatory symptom.

        What it is, is an incentive to develop good tools to define (subjective) PEM. (Just like what has been done with fatigue, headaches, etc.)

  43. Denise says:

    Bob – you said that for large studies case definition isn’t important.
    But definition DOES matter. It matters a great deal!
    The Pace Trial participants were a very mixed cohort which confounded the results.

    Cort – I am not equating the multi-site study with the Pace Trial.
    I am saying that if patient characterization (in ANY study) is unclear, the study results will also be unclear.

    Given the choice of a few good studies using for instance, the Reeves Empiric definition, or other definitions that does not accurately characterize ME, and the choice of losing a few good studies that used those definitions – I favor losing those studies.
    Decades of research time have been lost because unclear definitions have been used.

    I would rather that from here forward all research use a clean definition that accurately characterizes ME.
    If we start NOW with a clean, clear definition I think useful answers will come through a lot sooner than if we continue to allow sloppy definitions of patients.

    To almost everyone – I think it is unreasonable to say/imply that I and others have not kept up with what the CDC multi-site study entails, or recent articles.
    Or that because we can/will not expend all of our limited energy on the hot topic of the day we are not true/good/useful advocates.
    Please choose words carefully rather than making untrue assumptions and inferences about each other.

    • Cort Johnson says:

      Fair enough…Which definition would you use?

      The CCC – which brings in a strong psychiatric subset?
      The ICC – which also brings in a strong psychiatric subset?
      Fukuda – which we all agree is too vague
      The London ME definition – completely untried
      SEID – not in existence when they started the survey

      Do you see the problem? There is no agreed on good definition right now. There is no definition to use. The definition to use will be the definition – if most people agree on it -that comes out of the IOM process.

      I agree with Bob, though. If you have a large enough cohort – if you take the time – you can discover a lot but comparing definitions to each. This cohort is certainly large enough. I think they may not do that, though. because statistical analyses are pushing us closer to the right definition. The concensus definitions will simply disappear and I believe they will disappear quickly – they’ll become historical artefacts.

      ME/CFS in a sense will be starting all over – just not in time for this study :). But this study was always designed to look at the patients in ME/CFS doctors practices not to study certain types of patients.

      However it was put together, this study is going to focus on hundreds of very sick people who have ME/CFS. Through the definition aside and look who is in these studies. They are Dr. Peterson’s and Dr. Lapps and Dr. Klimas and Dr. Bateman’s patients. These are careful, experienced doctors. They have seen it all. As Dr. Peterson said, this is the first extensive look at how “classical” ME/CFS patients fare at ME/CFS doctors practices that’s ever been done.

      Do you really want to risk losing that?

      I can only refer to what people post on this thread…Since you haven’t been posting on it you obviously weren’t included in whatever comments I made.

      • matina says:

        That is the BIG ISSUE. What Case Definition to USE! WE need the experts & the patient community to get this done. Modify/update the research & diagnosis case definition with a NAME for this disease. So moving forward we will have one name for the disease (and NOT CFS or ME/CFS..for example use ME) and we have enough resources to solidify a case definition. The Concensus of the experts to Burwell was to use the Canadian Consensus Criteria not do the IOM. But, we have to retire CFS. Once we all agree (consensus) on the Name and Case Definition. Than we would be in a much better place for better research, awareness and medication education. HHS would have to use to the New Name and case definitons. Therefore, we will have a consistent messages so main stream doctors don’t have to decided what is right or go to CDC and use GET and CBT and review all of the case definitions. This can be easily be done thru a Working Group..or. brain dead. Until we all are one one page…we will not progress at the speed we need to what causes it to treatment. Pharma will be more interested in our disease once we all are on the same page. This all has to be driven by our experts in collaboration of HHS and patient community.

  44. Cort Johnson says:

    Plus there’s a large pediatric component to phase II of the study. Do you want to risk losing that? Does anything about the study strike you as beneficial?

    • Denise says:

      Cort – I do not support something just because it has a pediatric component or even if it is exclusively pediatric. In terms of research studies I prefer to support things that are well-designed, with carefully characterized cohorts to give the best possible chance of clear results.

      I think the multi-site study may be more interesting than other work by the CDC but that does not necessarily mean that it is as solid as it ought to be.

      My point about choosing words carefully applies more broadly than just comments/inferences/assumptions about me. In several comments on this post unfair/untrue/misleading things have been said/inferred about others. Again I urge everyone (myself included) to choose words carefully.

      • Cort Johnson says:

        That’s too bad. This study will surely provide a great deal of information on the status of pediatric patients in this country. Nothing like it has been done before.

        It was put together Dr. Unger in collaboration with Dr. Klimas, Dr. Bateman, Dr. Peterson, Dr Natelson. Kogelnik and others. Some of these doctors are accomplished researchers as wel. What I’m trying to say is that I assume, given the people who are on board. that the study is well designed and patients will be very well characterized. Given the amount of data that will taken I imagine they will be very well characterized indeed.

        Even if there are problems in the study that Dr. Kogelnik, Klimas, Natelson, etc. missed I would think it would still be a worthwhile study given the paucity of information on pediatric patients. Even if the study was only five out of ten in quality – I would still support it because while quality is important, we would still get good data from it. Supporting costs me/us nothing.

        On the other hand, losing the study and the CDC program costs anything it might produce. If the CDC money disappears it doesn’t go to another CFS study group – it just disappears. The upshot is that kids with ME/CFS remain basically a black hole in the scientific literature.

        With regard to quality here’s an example: even with the Empirical definition the CDC has still produced positive studies with regards to our understanding of immune functioning, gynecological disorders, cortisol, genetics and others. The ED doesn’t appear, in other words to be leading us in the wrong direction, it’s probably just not leading us fast enough in the right direction.

        In other words even if the pediatric study is not perfect – and I will submit that it must be pretty darn good with those players involved – it would still move us forward significantly.

        We have to beware, as has been said quite a few times, of the perfect being the enemy of the good.

  45. Denise says:

    “I would rather that from here forward all research use a clean definition that accurately characterizes ME.
    If we start NOW with a clean, clear definition I think useful answers will come through a lot sooner than if we continue to allow sloppy definitions of patients.”

    To clarify – the definition must be validated.

  46. Michele Krisko says:

    I found both the blog, written by Jennie, and all the comments to be good food for thought. I appreciate everyone, who with the best of intentions, took much time, and most likely a ton of energy to present facts and opinions on this subject. I can see both sides of the argument.

    I personally will be writing letters asking that the monies for ME/CFS be restored to the budget for the CDC.

    I am one of the people in the multi-site study and feel the study needs to go forward. Being a participant I have been able to see first hand how careful and in depth this study is proceeding. I think this study is a game changer just as Cort and Bob have expressed. However I understand from other opinions that the study may go forward whether I use my energy to write letters or not. I for one do not wish to sit back and not speak up for the funding just in case doing so will make a difference.

    Most of our ME/CFS experts are at or near retirement age. We need this study to capture their experience with patients over the past couple of decades. We may not have the chance to have Peterson, Lapp, and the others involved in the future. That would be tragic!

    I agree that Dr. Unger is quite intent on making a difference and truly cares about our patient community. I am willing to expend a bit of energy to write in support of a budget specifically for ME/CFS and roll the dice on her. She is a very caring person but she needs the data of this study and I would prefer she not have to take money out of some other program to fund things for our disease. Remember how we felt when we found out the CDC was taking money directed for our disease and using it elsewhere?

    I know Jennie’s blog was just her explanation of why she will be using her energies working on other issues instead of writing letters for the CDC funding. I appreciate her efforts and respect her and other people’s right to choose what they will focus on.

    I hope people who are perplexed as to what they should do will read over the comment section after her blog. I think the discussion brings about a more informed patient community who can then act on what they learned from facts and opinions presented.

    Kudos to Cort, Mary S., and others who shared their knowledge and opinions more than a few times, showing their passionate concern for everyone who was unlucky enough to come down with this monstrous disease. I figure they are probably lying flat somewhere trying to recover the energies they expended. You are worthy warriors! Thank you to all of our warriors who battle with sometimes as little as 10% of a normal person’s energy level and limited cognitive function.

  47. Roy says:

    A similar problem happened in 1991 when I was the (volunteer) CFS lobbyist living on Capitol Hill. It was relatively easy to fix at that time.

    There was an increase in the CDC funding in the House Labor HHS Appropriations subcommittee report language, but nothing in the Senate Labor HHS Appropriations Subcommittee report language.

    To oversimplify a bit, after many people wrote respectful letters in support of the increase, I arranged for a meeting with the 2 Legislative Aides (LA) of our senator, Harry Reid, and representative, John Porter, who were on those key committees and submitting the language.at the time. That was usually called “providing leadership”. There was an agreement to add the increase in the conference report and that happened.

    As other people have stated this is not a done deal and is just report language, not law. There could problems if the conference report does not reconcile the difference between the House and Senate report.

    Sorry to enter the conversation late due to present brain stamina problems.

    In

  48. Jim Ellsworth says:

    Here is a brandy-new gynecologic study from CDC:

    http://www.ncbi.nlm.nih.gov/pubmed/25647777

    Title: Early menopause and other gynecologic risk indicators for chronic fatigue syndrome in women

    OBJECTIVE:
    This study aims to examine whether gynecologic conditions are associated with chronic fatigue syndrome (CFS).

    CONCLUSIONS:
    Menstrual abnormalities, endometriosis, pelvic pain, hysterectomy, and early/surgical menopause are all associated with CFS. … Further work is warranted to determine whether these conditions contribute to the development and/or >>perpetuation<< of CFS in some women.

    This is from the discredited Reeves/Georgia/Atlanta questionnaire based cohort.

    "Research1st" on Phoenix Rising sums it up very well:
    For the CDC CFS researchers to suggest that Gyne dysfunction could ''perpetuate'' a chronic neurological disease, is utterly preposterous, but totally predictable,due to their past and current failure to do a single thing to control the disease process for over 25 years.

    (maybe this is why folks are still skeptical)

    • Cort Johnson says:

      I would try again, Jim. With the high female predominance in ME/CFS it would be surprising if female hormone were not tied in some way to this disorder. Plus estrogen is a very complex substance that has multiple impacts on the immune and central nervous system.

      Estrogen actions in the nervous system: Complexity and clinical implications.
      Cersosimo MG, Benarroch EE.
      Neurology. 2015 Jul 21;85(3):263-73. doi: 10.1212/WNL.0000000000001776. Epub 2015 Jun 24. No abstract available.

      Estrogen, for instance, has been linked to pain sensitivity as well. Broderick ‘swork clearly implicates female (and male) hormones in ME/CFS as well.

      A survey on Health Rising suggested as well that enormous gynecological are present in ME/CFS as well.

      Contrary to whoever you’re quote the gynecological data fits nicely into what we know about ME/CFS.

      • Jim Ellsworth says:

        Gynecologic history was collected using a self-administered questionnaire.

        There were no blood tests or physical exams. No measurements of estrogen. The study doesn’t even mention estrogen, so this is a red herring as to the value of this study.

        “CFS” was diagnosed by questionnaire – this is yet another cooked dataset study. The study tells us that women have gynecologic problems – we already knew that!

        Correlation does not equal causation. Isn’t is just as likely that “CFS” perpetuates gynecologic problems? After all, it causes problems for most of our other systems. But CDC doesn’t want to study how “CFS” affects gynecologic problems – it’s right in their conclusion:

        “Further work is warranted to determine whether these conditions contribute to the development and/or perpetuation of CFS in some women.”

        This conclusion is not supported by this study. A fair conclusion might be, “How these conditions are related needs to be studied.”

        The barely-hidden message is:
        “Pelvic pain and similar medically unexplained symptoms may cause/contribute to/perpetuate CFS, which needs to be treated by CBT, because that’s how medically unexplained symptoms are treated”

        If this is an example of the “new” CDC, God help us, ’cause we’re sure gonna need it.

      • Janelle says:

        This is a popular theory of autoimmune disease (something else with a high preponderance of women, possibly something relevant to ME/CFS although we don’t know yet), but this theory is being discredited due to lack of evidence. Just because more women get it does not automatically make it controlled by the hormone system. There are other differences between men and women in addition to this.

        Here are some other current theories:
        http://www.slate.com/articles/news_and_politics/explainer/2011/09/autoimmunity_is_from_venus.html
        http://www.hss.edu/conditions_autoimmune-disease-sex.asp
        I’ve heard another but forgot it just at this moment. 🙂

  49. Gabby says:

    Cort said:

    “Fair enough…Which definition would you use?

    The CCC – which brings in a strong psychiatric subset?
    The ICC – which also brings in a strong psychiatric subset?
    Fukuda – which we all agree is too vague
    The London ME definition – completely untried
    SEID – not in existence when they started the survey

    Do you see the problem? There is no agreed on good definition right now. There is no definition to use. The definition to use will be the definition – if most people agree on it -that comes out of the IOM process.”

    This information not true.

    First of all, the CCC is currently being successfully used by most ME/CFS researchers.
    The letter of 50 ME/CFS experts. including Leonard Jason to HHS of Sept, 2013, urged HHS to immediately adopt the CCC.
    http://thoughtsaboutme.com/2013/10/26/16-additional-mecfs-experts-added-signatures-to-open-ccciom-letter-to-sebelius/

    In addition, even if in the unlikely case that HHS adopts the inadequate IOM criteria, it will only be for clinical diagnostic purposes. HHS has not asked the IOM or the P2P to create new research criteria. The IOM criteria have no bearing on research criteria.

    If they refuse to adopt the CCC for research purposes, the failed Fukuda will remain their official research criteria.

    • Cort Johnson says:

      Read this blog. It’s based on Leonard Jason’s work. He has repeatedly said that too many symptoms will cause problems. His own work — which the IOM followed closely – indicates that just four symptoms are needed and 4 symptoms will avoid the problems of the CCC and ICC

      http://www.cortjohnson.org/blog/2013/04/28/are-the-canadian-consensus-and-international-consensus-criteria-broken-study-suggests-both-may-select-for-more-psychiatric-patients/

      • I did read it. There is NOTHING there about the Reeves questionnaires (aka the “empirical definition”).

        I think Leonard Jason has a valid concern that physicians find the CCC too complicated – I have found that to be true when trying to get a physician to look at the booklet. He is interested in a relatively easy way to get primary physicians to diagnose ME/CFS. He is being practical.

        When Lenny writes about the Fukuda definition, he means Fukuda (1994) and is pretty clear about it. He does NOT mean the Reeves questionnaires that supposedly “operationalized” the Fukuda definition.

        When Jason suggests questionnaires to use in clinical practice (or as a first pass for researchers), it does not mean he doesn’t think there are more symptoms or that it’s a complicated disease – or that he thinks the Reeves questionnaires do anything other than what he wrote before.

        And his preference for his own set of questionnaires does not mean that, with his taken out of the equation, he would in any way prefer that the so-called “empirical definition” (Reeves questionnaires) be used.

        In the meantime, as several people have already noted, the CCC is being used successfully by many researchers in ongoing projects. It is very frustrating that CDC refuses to acknowledge that.

      • weyland says:

        Cort, can you cite where you’re getting your claim that CCC/ICC selects patients with more psychiatric disease? As far as I know both criteria explicitly exclude patients with primary psychiatric diseases. In the paper that your above blog post is above, Jason points out that CCC select patients with less psychiatric comorbidity and more physical impairment compared to Fukuda.

      • matina says:

        Here is what he what Leonard Jason stated about the IOM Definition issues and at the end he states an alternative way on how the case definition should be developed which is the best way:
        An alternative vision is still possible if those in power are willing to bring all interested parties to the table, including international representatives, historians on the science of illness criteria, and social scientists adept at developing consensus. In a collaborative, open, interactive, and inclusive process, issues may be explored, committees may be charged with making recommendations, and key gatekeepers may work collaboratively and transparently to build a consensus for change. Involve all parties — patients, scientists, clinicians, and government officials — in the decision-making process. – See more at: http://blog.oup.com/2015/03/iom-chronic-fatigue-syndrome-systemic-exertion-intolerance-disease/#sthash.7ynTfwah.dpuf

        • Cort Johnson says:

          That’s fine. I wasn’t referring to the IOM report, though.

          • Anne Ö says:

            I, too, think that the letter signed by 50 experts recommending the CCC makes a pretty strong point for CCC.

            As does the fact that the international medical association, IACFS/ME, recommends it.

            CCC _is_ being used in research, for example here in Sweden and in the meticulous studies (on Rituximab and other drugs) by the Norwegian researchers Fluge and Mella.

  50. Back to funding for CDC – it is quite possible that Beth Unger is doing her utmost, but the higher-ups at CDC are still against us, and still have not learned anything useful.

    It is quite possible that it is CDC itself that is squeezing us – again, not Dr. Unger, but people higher up.

    At the risk of repeating myself (I’ve told this story before, tho not here):

    in 2011, only four years ago, at the NIH State of the Knowledge CFS conference, I had a casual conversation with somebody higher up at CDC than Reeves/Unger. I told him that a spinal tap in 2009 showed I was positive for active infections of CMV and HHV-6. That it coincided with a full array of symptoms of viral encephalitis. And that when I am on Ampligen, those symptoms go away – all of which I thought was evidence that, for some of us, we are dealing with viral encephalitis.

    He told me that we test positive for viruses we don’t have. I asked him if he could point me towards the study that showed that. He got very upset and blurted out, “Well it happens in SYPHILLIS!”

    Then he turned and walked out. It was almost as if he had said, “talk to the hand!” I would have been flabbergasted … except I’ve gotten that reaction before from members of NIH and CDC and DHHS.

    Now, MOST of the government workers who attended that workshop were intrigued and interested. But there is an Old Guard at both CDC and NIH that still believes the psychosomatic junk and refuses to budge. This gentleman was clearly part of the problem.

    It is worth pointing out that both HHV-6 and CMV are known to cause encephalitis, and both are “AIDS” diseases – if you are HIV positive and get HHV-6A (which is the variant I have) or CMV (cytomegalovirus), congratulations! Your diagnosis just changed to AIDS. So they consider the tests valid for HIV-positive patients.

    There is dogma in the medical establishment that (in the absence of a retrovirus), the body either kills viruses or the viruses kill you. There is no middle ground. There is no such thing as a viral infection that goes on for years and decades. In my case, that’s all evidence to the contrary … But clearly this official believed that. Who else at CDC does?

    The budget submitted – just as was true of the NIH budget – asks for increased funding for CDC in general that would swallow the $6 million for CFS without noticing. They would not have to take money away from another project – what is going on is they are trying to take money away from OUR project for somebody ELSE. Given the paucity of the amount, the severity of the illness, and CDC’s admission that perhaps 850,000 patients don’t even have a diagnosis (let alone treatment), that’s a truly stunning commentary about CDC itself.

    So – if anybody has contacts in Washington who could find the answer to this, I am wondering whether it was CDC (not Unger) that said the reduction for CFS was fine by them …

    • Jen B says:

      I heart this.

      I’ve always wanted to get a spinal tap when I am having active symptoms of encephalitis, but have never known how to ensure that the spinal fluid would ever be properly handled and tested. Generally I can’t get in to see a doctor on such short notice and if I go to the ER, even if I can’t walk or touch my chin to my chest, they tell me I am having a headache and should take some aspirin.

  51. Christian Godbout says:

    Funding is something you want to increase, or at least secure, but certainly not loose! To me the information the CDC is spreading regarding the nature of ME/CFS and its “management” can be, and seems to be, a work in progress; it can be bettered anytime (and the “bad stuff” archived can be deleted anytime also…), if there is a will. But that’s all it takes: a simple will (and science), whereas a funding decision is far more bureaucratic and is not as easily modifiable. Once the decision is made, it is hard to reverse and it takes a lot of time. So, my own humble take on all this is: let’s secure the funds first, and take care of the website afterwards!

  52. Snow Leopard says:

    Refocus/refresh/restart the CDC program by all means, but cutting the funding entirely sets a really really bad precedent…

  53. janine says:

    As a suggestion, I think we need to have a volunteer write a summary of the key points the ME/CFS community is requesting, share it out for feedback, and then start a petition at: https://petitions.whitehouse.gov/

    In my opinion, this is THE place to go to have your voice heard and get visibility. They are also now partnering with the largest online petition site, change.org

    After the petition is posted we have to act quickly to get the first 150 signatures, so our petition is visible to everyone. Then we have to get 100,000 signatures in order to get a response from the White House.

    We would need a huge campaign on social media to get signatures quickly.

    Twitter is @wethepeople

    “To cross the first threshold and be searchable within WhiteHouse.gov, a petition must reach 150 signatures within 30 days.

    To cross the second threshold and require a response, a petition must reach 100,000 signatures within 30 days.”

  54. matina says:

    If you want to know the facts about HHS and the history of neglect of CFS, CFIDS, ME/CFS. Jennie does a great job on her blog as well as so many other people ..I don’t want to list names because there are so many great advocates and public comments, etc. But, for people that may not know of this great paper with references by Mary Dimmock & her son..

    “Thirty Years of Disdain: How HHS Buried ME”. Great factual history of the birth & history of CFS, funding flaws, research flaws..etc…understanding the case definitions & after all these years we are all still suffering. Lets keep fighting but not for pennies…for what we are worth!

    https://dl.dropboxusercontent.com/u/89158245/Thirty%20Years%20of%20Disdain%20How%20HHS%20Buried%20Myalgic%20Encephalomyelitis%20May%202015.pdf

  55. Carrie says:

    I will be waiting for the CDC’s response, or non-response, to the Senate’s proposed funding cut. Will THEY fight for THEIR program?

    If the CDC remains silent, it will be impossible not to draw conclusions.

    • anonymous says:

      I would not take silence from the CDC to indicate anything. Since they are part of the government, I suspect rules and propriety would make it highly unlikely they would make any response public if they had a response.

      It’s like any institution. Suppose you work for a large corporation and that corporation makes a decision you disagree it. How likely is it you will make your opinions known publicly? Be honest.

      I’ve worked for non-controversial companies and have had to sign non-disclosure agreements or statements that I would go through mediation rather than through lawyers if there is a disagreement. I’m sure the government has similar policies albeit those are balanced with “sunshine” policies. Most people might complain to fellow co-workers or family and friends but not to a stranger.

      • There are people rolling in and out of CDC, such as Suzanne Vernon, who probably know what is going on. The CAA (now the Solve ME/CFS Initiative) always knew what was going on. They always got information none of the rest of us did.

        It was the Solve ME/CFS Initiative that finally broke the silence about it (after it had been discussed to death here for three days).

        What concerns me is these things always turn out to have more going on than we know at the time (this is me speaking as a historian now).

        I just know it is a pathetic amount to begin with, and to eliminate it entirely – what ARE they thinking?

        The only thing I know is going on at CDC came from that contract announcement – that they want somebody to “partner with” (that usually means the CAA – I mean the Solve ME/CFS Initiative) to send out information about The Disease, and from what was in the posting, they meant “CFS”.

  56. Anonymous says:

    One of the biggest issues I see with ME/CFS advocacy is that often advocates and patients want things to be done in specific ways and are unwilling to compromise in any way. It is highly unlikely that any agency, researcher, clinician, nonprofit, etc. will ever be met with 100% approval by anyone. Personally, if I can get 80-90% of what I want from a negotiation, I am usually satisfied enough.

    I have my own issues with the CDC but am concerned, like others, that cutting funding for the ME/CFS will not be helpful at all for the community and sets a bad precedent for ME/CFS funding, poor already, across the board, whether it goes to NIH, AHRQ, etc. I think a better strategy, as noted by someone above, is to find out WHY the Senate HELP Committee decided against recommending funding and, if possible, how the cuts specifically affect the programs CDC is carrying out right now. That Multi-site study is valuable and it is unlikely something similar will be organized or funded again anytime soon.

    I plan to talk to my Senators this month.

  57. I thought Leonard Jason’s most recent article was relevant to this whole discussion: – he writes: “Based on the present analyses, the ME-ICC (Carruthers et al., 2011) appear to a select a more functionally impaired and symptomatic group of individuals when compared to those who met only the Fukuda et al. (1994) criteria.”

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4125561/

  58. Erik Johnson says:

    The moment someone accepts Fukuda as a valid definition, they have embraced the idea that a syndrome can be made devoid of its original purpose.
    And substituted another “target”
    All without changing the name, which would obviously confuse people.

    Science doesn’t work that way.
    Which is why Straus and Fukuda did it.. to make sure science wouldn’t work.

    Why do people think Straus was relieved that now they could project “at leisure” what would come of it?
    They felt that they had successfully gotten rid of the “typical outbreak of ME” the Holmes definition was based on.
    To be replaced by a new “CFS” syndrome based on nothing more than its own deliberately vague description.

    -Erik Johnson
    Incline Village survivor – participant in the Holmes et all “CFS definition patient study group”

    http://cfidsreport.com/images/Straus_001.jpg

    “Now that the definition is revised we could project at leisure what will come of it”

    “What I would most like to see is that fatigue is not abandoned as a subject for careful consideration
    because of further failures of CFS case definitions or frustrations arising out of shrill pressures
    to justify an entity of dubious validity such as CFIDS.”

    “Maybe we would have been smarter to have suggested that model (fatigue) to begin with rather than easing
    through a CFS hypothesis as a default pathway for a failed viral hypothesis. So be it”

  59. Erik Johnson says:

    The Holmes definition was not based on any systematic assessment of patients, and was never intended by its authors to “be the disease”

    It was basically a statement of intent to do further research.

    The Fukuda “revision” made it clear that the CDC was not going to treat the charter evidence as being part of the syndrome.

    THAT is where the CDC parted ways with the methods of science.
    And honesty.

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