Showing the Back of Their Heads

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The final P2P report is published, and now it’s time to evaluate the quality of the recommendations and how well the process served ME/CFS patients. There are many good things in the P2P report, and I’ll be focusing on those in my next post (now available here). Today, I want to discuss some serious flaws in the report and how, despite all the rhetoric, NIH and the P2P Panel did not engage with the public in a meaningful way. And I also want to discuss a lesson we can apply next time.

All That Input

At the telebriefing on Tuesday, June 16th, Dr. Green said the Panel members individually reviewed each of the public comments and discussed them in a conference call. Unfortunately, the Panel did not take most of our advice. The Panelists may have reviewed each comment, but only minor changes were made to the draft report in response to those comments.

For example, the final report appropriately deleted the sentence, “There is no agreement from the research community on what needs to be studied.” (Draft, lines 34-35) The statement that ME/CFS “overlaps with many other diseases” was also deleted. (Draft, line 33) The need to disseminate diagnostic and treatment recommendations to primary care providers was expanded, as many public comments suggested, to include specialties like neurology, rheumatology and infectious disease. (Draft, line 192) Other minor corrections were made, such as clarifying that Fukuda allows 163 combinations of symptoms, not that there are 163 symptoms of ME/CFS. (Draft, lines 50-51)

But the vast majority of comments were ignored. Even the statement that ME/CFS has an economic impact greater than $1 billion (Draft, lines 6-7) was not fully corrected. I lost count of the number of public comments that provided the correct number of more than $20 billion in direct and indirect costs. However, the final version estimates the burden at $2 to 7 billion, and does not clarify whether those are direct or indirect costs. When journalist Miriam Tucker asked for the reference for this estimate, Dr. Green said they used a number that was “scientifically based,” but she did not provide a reference.

But these are minor points compared to the failure to incorporate the major issues highlighted in multiple public comments. All the input on the critical points that most need attention was ignored.

 The Money Elephant

The issue that receive more attention in public comment than any other was NIH funding. Comment after comment begged the Panel to acknowledge the paucity of funding and to recommend that NIH significantly increase its investment in ME/CFS research.

The IACFS/ME said, “[We] believe that the elephant in the room – research funding . . . needs to be addressed more strongly and specifically. . . . Thus we respectfully ask that the NIH Panel highlight the inadequate research funding of ME/CFS and link this core premise to specific recommendations for new funding initiatives, with dollar amounts, mechanisms, and deadlines, to begin to address the current underfunded status of this illness.”

The CFS Advisory Committee said, “We also ask that you take note of the fact that among the 234 disease categories supported by NIH in 2014, chronic fatigue syndrome ranked 228th with an estimated $5 million in funding. In order to move forward, it is vital that this issue be addressed. We ask that the Panel explicitly address the urgent need for government funding in order to advance the research for ME/CFS.”

The Massachussetts CFIDS/ME & FM Association said, “All of these recommendations for future directions in research require significant funding . . . NIH has never funded this illness commensurate with its impact on patients and society. While it may be possible to cobble together small amounts of funding from different agencies for some specific initiatives . . . why not just recognize the inequality here and deal with it? The types of research recommended here cannot be done on nickels and dimes.”

I could go on. Over and over and over, public comments begged the Panel to recommend an increase in NIH funding. If the Panel did indeed read the hundreds of pages of comments we submitted, they could not possibly have missed the blaring consensus on the urgent need to add zeroes to the amount of NIH’s ME/CFS investment. Despite all of this, the Panel made no such recommendation. I have no doubt that some people will conclude that NIH told the Panel they could not make the recommendation.

In fact, Dr. Green told Medscape News, “Money can be reallocated or better targeted.” That’s quite explicitly not an increase in funding, folks.

Eating the Oxford Cake

I blogged about the moment at the P2P Workshop when the Evidence Practice Center suggested retiring the Oxford definition, and the illogical reply to my question about retiring Oxford studies. Chris Heppner made a powerful case for declaring independence from the Oxford definition once and for all. But not only did the Panel’s final report fail to take that logical step, it actually toned down its language on the Oxford definition.

The draft report stated, “The Oxford criteria . . . are flawed and include people with other conditions, confounding the ability to interpret the science.” (Draft, lines 38-40) That sentence is gone from the final version. We are left with the recommendation from the Draft, unchanged in the final version: “Specifically, continuing to use the Oxford definition may impair progress and cause harm. Thus, for needed progress to occur, we recommend (1) that the Oxford definition be retired . . ” (Final, p. 16)

Personally, I am very disturbed by the deletion of the statement that Oxford includes people with other conditions. Why? Because the data establish that this is the case. The Panel should have retained their acknowledgement of the data. For the Panel to step back from acknowledging the facts strikes me as ominous, because obviously it helps ME/CFS advocates to have such an explicit declaration in the report and its removal makes no sense in light of the data. It will certainly raise questions in some minds about whether the Panel was pressured to remove the sentence.

I am also not satisfied with the recommendation to retire the Oxford definition without an accompanying recommendation to retire Oxford studies as applied to the ME/CFS population. Why? Because the largest trial of CBT and GET, the trial that is the basis for the claim that these therapies are effective treatments for ME/CFS, uses the Oxford definition. And that study is continually trotted out, including in the Annals treatment article this week, and no one will acknowledge the very basic logical fact that the study was done on a cohort that included an unknown number of people who did not meet criteria for ME/CFS (not Fukuda, not CCC, not ICC, and not SEID).

Multiple public comments, including mine, made this point to the Panel. The bottom line is, “You cannot take the results of studies done on subjects who do not have ME/CFS and simply apply those results to those that do.”

For some reason, the Panel did not agree with all of the comments making this point. Why? One possible reason is that if the PACE trial and similar Oxford “treatment” studies are discarded, then there is almost nothing left. This is especially true for the systematic evidence review, which excluded studies like the Rituximab trial. It would mean admitting that thirty years of research has not produced an effective treatment for ME/CFS, and that the only promising treatments are extraordinarily expensive. That’s a damning fact and quite an embarrassment for NIH and the research enterprise.

Not Our Wheelhouse

Multiple public comments urged the Panel to consider the IOM report while revising their recommendations. Even Dr. Nancy Lee, newly re-appointed DFO of the CFS Advisory Committee, asked them to discuss it.

Dr. Lee emailed her comments the day after the posting of the Draft Report. I think it’s worth quoting Dr. Lee at length: “To avoid the mistaken perception that NIH and the P2P Panel didn’t know about the IOM study (which NIH helped fund!), I urge you to mention the IOM study in your report. The discussion on lines 201-212 should be modified to acknowledge that the IOM’s report may make substantial progress in fulfilling P2P recommendation. There is a good chance that the IOM report will be released before the Panel’s report so you might even be able to modify your report at the last minute to reflect the content of the IOM’s report. HHS spent $1million on the IOM study to get much of what your panel recommends on line 202. I don’t want it to appear that NIH’s right hand doesn’t know what its left hand is doing!”

Despite the many requests, the Panel wrote that considering and incorporating the IOM’s recommendations was “beyond our scope and charge.” (Final, p. 18)

The charge to the P2P Panel was to provide “guidance to the NIH on research gaps and research priorities for ME/CFS.” (Final, p. 18) The final report notes the critical importance of case definition in ME/CFS research, and urges that a consensus be reached on a single case definition. (Final, pp. 9, 16) So how is the IOM report beyond the scope and charge of the P2P Panel?

I think the Panel members would agree that science requires examining all the data. My personal belief is that the phrase “beyond our scope and charge” is actually code for “we were not given the time and staff support to fully evaluate the IOM report.” Was it a matter of NIH putting its P2P process (evidence review + workshop = report) over the quality of the product? Was there some other reason NIH did not ask the Panel to review and consider the IOM report? I do not know.

Talking At The Back Of Their Heads

ignoreBy now, we are all familiar with the NIH party line that ME/CFS patients and advocates were fully engaged by P2P. At the telebriefing, Dr. Ronit Elk said that patients and families were “completely a part of the process.” I won’t review all the evidence to the contrary from the last 18 months.

What I will do is point out that the “tremendous number of responses,” as Dr. Elk described it, seems to have had very little impact on the revisions to the draft report. Despite the extra time given the Panel, despite Dr. Green’s statement that each panelist read every single comment, despite the assurances from NIH that patients and advocates were integrated at every step, our comments were not accepted.

Many advocates might think that the dismissal of these comments prove that public comment is a waste of time. We comment, they don’t listen to us, so why bother? I say that’s a response that plays right into the government’s hands. This defeatist reaction has it all backwards.

Over 100 people and organizations submitted comment on the P2P report, and they were ignored. That gives us another link in the Thirty Years of Neglect Chain. We can embarrass them with this fact. We can tell the media, our Congressmen, CFSAC, and others that over 100 people spoke and we were dismissed and ignored. That’s the level of contempt NIH has for our input.

Dialing back our participation is exactly what they want us to do. They want us to go away. They think that if they just keep ignoring us, we will get frustrated and lose interest.

We should do the opposite. We should say, You ignored 100 comments? Let’s see you ignore 200 or 500 or 1,000. The more comments that go in, and the more they ignore them, the more ridiculous the situation becomes. That is a political weapon!

So yes, 100+ comments was not enough to get a stronger recommendation on funding into this report. There is still plenty here we can use. And we have one more incident of Government Ignores Constructive Response From Patient Community to add to the list. They are practically begging us to turn up the volume and intensity.

NIH is showing us the back of their heads. Ok, then we have to be louder. NIH is ignoring us. Then let’s be more forceful. Let’s increase the volume, increase the intensity, and build an ever growing wave of actions that will ultimately overwhelm resistance and swamp them. They ignore us because they can. So let’s make it impossible for them to do so.

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42 Responses to Showing the Back of Their Heads

  1. Anonymous says:

    I am glad there were over 100 sets of comments. It is difficult however to understand how the P2P report made light of them.
    You are correct in saying that we can’t turn away from involvement – that would be akin to letting them have their way.
    As a community we must work together to make it impossible for HHS, NIH, etc to ignore us!

  2. Marilyn says:

    100+ comments. This is actually quite discouraging. A million or more patients in this country and only 1 in 10,000 bothered to respond?

    • Janelle says:

      There are indeed a lot of patients, but 80-90% are undiagnosed. If you don’t know what disease you have, you can’t help with the effort for recognition and treatment. You’re just lost. Also some are too ill, or get too stressed, to be able to do something like write an advocacy letter. Some are still trying to work and honestly don’t have the energy left for anything else. So it’s really not a cause for concern, when you think about it.

      Why NIH doesn’t do something useful, however, that concerns me a lot.

  3. Marilyn says:

    100+ comments. There are at least a million patients in this country, and only 1 in 10,000 responded? This is pathetic! Why aren’t more people involved?

    • Anonymous says:

      It is worth keeping in mind that most patients have not been diagnosed (even the CDC says 84% are undiagnosed).
      Many patients are too sick to process the reports and formulate comments. Others are trying desperately to work/attend school/take care of their family, etc. and have no extra to devote to advocacy.
      It would be very helpful if more families/friends were actively involved in advocacy.

      • Anonymous says:

        I should clarify that in my comment above I was trying to provide thoughts on why so few are involved.
        I absolutely think we need to have more patients, family members, friends, and others involved.

  4. Carollynn says:

    Thank you for your analysis and leadership, Jennie. Yes it’s discouraging and exhausting, and yet we must press on. I can’t write more than that with PEM after family activities, but I want to be sure you feel heard and appreciated. You hold the big picture for us so well when it is so difficult to do with our particularly cognitive difficulties. Thank you so very much.

  5. Jennie, thank you so much for your support and keeping us informed. Is there anyone you know who will be able to construct a letter that we could copy and send to “all the powers that be” so that most patients too sick to do this themselves can just click? Also needed, would be the email addresses to them. I think we would get more participation that way. What do you think?

    • Jennie Spotila says:

      I think sending letters is a great idea. It’s important, though, to think through the goal and approach. For example, sending letters to NIH complaining about the process would be fruitless at this point. On the other hand, sending letters to Congress or NIH about what will happen next could be very valuable. My next blog post may offer some direction for such a campaign.

      I do not have the capacity to organize such an effort. MEAction might be a good platform to consider, although I have not had a chance to examine their features. I don’t know if it would support a one-click letter campaign.

  6. Simon McGrath says:

    Interesting piece, Jennie, thanks.

    I agree with many of your comments and share the disappointment re funding comments that were half-hearted at best, but also think we should see the report in a more positive light. I think that we do need thousands of people to respond, as you say, and this report potentially gives us the opportunity to put the heat on the NIH and its paltry funding of research into this illness — because the NIH has said it will respond to the report.

    I’ll try to explain my line of reasoning, but first a query:

    In fact, Dr. Green told Medscape News, “Money can be reallocated or better targeted.” That’s quite explicitly not an increase in funding, folks.”

    I wasn’t sure. Does that mean reallocation to mecfs from elsewhere in the NIH budget to mecfs, or within the mecfs budget? I assumed the former, and that same Medscape piece by Miriam Tucker began:

    “More research needs to be devoted to the condition known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), according to a position statement from an independent panel convened by the National Institutes of Health (NIH).”

    More research means more money, usually. Did Miriam misunderstand? She’s normally pretty hot on mecfs matters. Or have I misunderstood. Seems to me it is at least ambiguous.

    In any case, the reason I think we have an opportunity goes like this:

    – NIH commissioned and independent group to review mecfs research and concluded it was in a bad way, more research was needed
    – Which is much the same as the IOM report, which the NIH also cofunded
    – The NIH has to respond to these reports:

    In a statement to Medscape Medical News, the NIH Office of Disease Prevention said although panel reports are not policy statements of the federal government, the NIH carefully considers the recommendations that are outlined in the final report. In addition, approximately 6 to 8 months after publication of a panel report, the NIH Office of Disease Prevention convenes a meeting of federal agencies to consider actions that might be taken to address the panel’s recommendations.

    OK, so as things stand probably nothing of consequence will happen here.

    But they are going to have to formally make a response. Isn’t this an opportunity to target the NIH (whoever is appropriate) both directly, or via Senators and Representatives? I’m in the UK so don’t have a good grasp on how things work across the atlantic, but if there were a similar situation in the UK (via the Medical Research Council) I’d be writing to my MP now and urging others to do the same.

    As you said:

    Dialing back our participation is exactly what they want us to do. They want us to go away. They think that if they just keep ignoring us, we will get frustrated and lose interest.

    We should do the opposite. We should say, You ignored 100 comments? Let’s see you ignore 200 or 500 or 1,000.

    Could those comments be focused on pointing out the wholly inadequate scale of NIH funding and saying its response should be specifically to ramp up funding for the next financial year? Say to $25 million as a readily-affordable downpayment towards what funding should be. And would that be a useful focus for efforts on Congress too?

    Apologies if I have misread the US situation, but from afar it looks like a real opportunity.

    • Janelle says:

      I don’t think we should wait. The U.S. Congress is currently considering increasing the US NIH budget. We should do something while this bill is being considered, both to urge that it gets passed and to make sure we don’t miss out again.

      • Janelle says:

        I mean, it’s a good idea to advocate later, too. I agree that it’s a good opportunity.

        After a nap, lol.

      • Janelle says:

        I mean, I agree it’s also a good opportunity to do something when the panel convenes. 🙂

  7. Well said, as usual. But all so frustrating.

    It just lends support to the belief that the flurry of activity on ME/CFS in these past twelve months – IOM, AHRQ, P2P – was just window dressing to avoid having to implement the very specific request of CFSAC – that NIH hold an OPEN WORKSHOP OF PROFESSIONALS TO REVISE THE 2003 CANADIAN ME/CFS DEFINITION AND THEN ADOPT IT.

    At least IOM mentioned the absence of any funding. Embarrassing that P2P did not, and frustrating that they watered down their critique of the Oxford definition. And, as you note, on the one hand they critiqued the Oxford definition while with the other they included all the British psychiatric cabal’s “studies” on CBT/GET without noting they all used the Oxford definition. ARGH!

    I think there are two elephants in the room, actually. Yes, the first is the total absence of NIH funding.

    The other is that in the thirty years since CDC adopted the name and Holmes definition of CFS, there has been not a dent in the percentage of patients with no diagnosis. For at least the past 15 years the estimate of the undiagnosed in America has remained at 85%. Never mind that most patients who are diagnosed have no competent doctor – 5 out of 6 patients have no idea at all what is wrong with them, and they are more likely to be of limited income and resources, and to be people of color. This goes for all the young people who remain undiagnosed as well – heaven knows what happens to them all. This disease does not go away just because it remains unnamed!! This utter failure of policy must be laid at CDC’s door, and is the companion to NIH’s refusal to fund research on a disease of the severity and prevalence of ME/CFS (Canadian definition 2003).

    Finally, I want to thank you for your closing comments – and totally agree with them. As you wrote,

    “Dialing back our participation is exactly what they want us to do. They want us to go away. They think that if they just keep ignoring us, we will get frustrated and lose interest.

    “We should do the opposite. We should say, You ignored 100 comments? Let’s see you ignore 200 or 500 or 1,000. The more comments that go in, and the more they ignore them, the more ridiculous the situation becomes. That is a political weapon!”

    It is indeed. Thank you.

  8. Michelle says:

    Was it a matter of NIH putting its P2P process (evidence review + workshop = report) over the quality of the product?

    Of course. NIH is a vast bureaucracy, and that is how bureaucracies operate (especially HHS). I’m not defending it, but I do think understanding how bureaucracies work (which you play valuable part in doing by telling us *what* they’re doing) would make manipulating them (in this case, them is HHS and Congress) to our advantage much easier. Process will always (well, almost always) trump quality in bureaucracies. So how do we use the process to our benefit?

    As always, your assessment here of the flaws in the process and product are spot on.

  9. Patty Hirst says:

    Thank you so much for your continuous critique of the P2P reports, the NIH, IOM, etc, etc! My brain processes move very slowly these days, and I can’t read – interpret – and analyze so much information. I’ve come to admire your tenacity, and really appreciate your opinion on all the many reports and conferences. The lack of funding by the NIH is unconscionable. Hopefully there is something that we all can do to make a difference, PLEASE continue to keep us updated.

  10. Rebecca says:

    Thank you for this excellent analysis, Jennie.

    Another serious shortcoming is that the committee utterly failed to address severely ill ME patients, even though it received this letter, signed by nine severe patients:

    The final report’s sole addition about the worst patients appears to be this: “People with ME/CFS may experience significant disability and some may become homebound and bedbound.”

    Wow! We wrote about how we need help feeding ourselves and using the toilet, and haven’t been able to leave our homes for years, and have lost our teeth because we can’t go to the dentist, and that tepid line is the best P2P could do? Shame on you, P2P!

    Perhaps they think if they simply ignore the sickest patients, we will all die and stop bothering them.

  11. Kathy D. says:

    This is an absolute disgrace. It is shameful that governmental committees and departments care nothing about seriously ill ME/CFS sufferers.
    Bottom line: The government does not want to fund ME/CFS research into causes or treatments nor to find biomarkers. In fact, again a committee is ignoring the scientific discoveries of Drs. Montoya, Lipkin, Honig and so many others. And it’s ignoring the IOM’s recommendations.
    They do not want to search for scientific treatments that work, so they’re sluffing it all off to treatments that are free or low-cost and that put the onus on the sick person.
    We can’t back down and stop advocacy; that’s what they want.
    I wish someone could initiate a lawsuit or we could do direction actions somehow.
    But since many of us can’t travel, that’s hard.
    We could all go to a local office and just lie down — I mean that literally, as I’ve
    almost done it in banks when I have to wait too long.
    But we can’t give up. That will get us nowhere.

  12. Cheryl says:

    “The charge to the P2P Panel was to provide “guidance to the NIH on research gaps and research priorities for ME/CFS.” ‘
    I think based on their statement of charge this was a fail.

    Thanks for keeping track Jennie.
    I do think in the next few months before the NIH meets to review and respond we should amp it up w/ letters . I think the idea of copying letter and making easy for patients to send is good. I would not be able to do much on my own otherwise.
    Thank you.

  13. susanna says:

    Thanks for your follow-up and analysis, Jennie.
    Where you say that if they excluded Oxford Criteria based studies there would be nothing left, they say as much in the AHQR responses:
    p7 submission: If you think the Oxford definition has serious issues, then you should not give studies using it the same credence as studies using more detailed criteria. Please consider removing or down-weighting the importance of the Oxford criteria studies.
    Response: After consultation with the Working Group and Technical Expert Panel, we elected to include all case definitions in the report a priori for several reasons. First, there are very few trials; excluding some of these definitions would limit the evidence even further than is already outlined.

    In other words, ‘we had to have something to say’. Never mind that it’s all misleading.

    You wonder what the P2P panel did in the 2 months extension they got to take into account the public submissions that had been forgotten.

  14. Jim Ellsworth says:

    I’ve been reading up on the political history of this illness in the UK. The health authorities have adopted almost the exact same strategy as NIH. There have been a number of commissions and reports and recommendations that are simply ignored. They even adopt the same tactic of using an independent evidence review with arbitrary rules that just happen to exclude the most important evidence.

    This is no accident, as the same cast of characters are involved, right down to the same insurers such as UNUM. The UK has even exported some of their Wessely School psychobabblers to the US! (please, take them back)

    The Congresscritters are too busy raising Big Money to bother with us (except for a few, of course). Burying NIH with more paper just convinces them we are all radicalized whatevers – but it’s good to let the record show that we say NO! to their policies.

    Until the links between the psychobabblers, the disability insurers, and the health authorities are fully exposed and broken, the policies will not change. That’s just the way the world works. Sorry.

  15. Andrew says:


    AHRQ/NIH would rather pretend like nothing is wrong than make an effort to improve the situation and explicit increase funding significantly and build research capacity for ME/CFS…

    The ‘lack of applications’ excuse is simply a lie – crowdfunding of research proves this. But those dollars could go a lot further if there was NIH funding alongside.

  16. A W says:

    Thanks for doing a blog on all this Jennie, sharp analysis as usual. I agree with lots Jennie is saying and also agree with Simon McGrath’s comments.

    I am seeing some unhappiness around with the P2P report and in many ways I understand that, including the above that Jennie has highlighted, I can understand rightfully so many being angry with it all. But mostly I am seeing quiet and that has me dumbfounded. Are people happy and not saying?

    I would like to say that I feel when it comes to Govt systems, all we are ever going to get is bureaucracy – it should be expected. Nothing is ever going to be handed on a plate – especially if money is involved.

    I ask the question though what do we have right now that we did not have 60yrs ago or even 30yrs ago?

    I think we have better quality research evidence and two reports that have been done by the mainstream medical establishment at the top hierarchy. The establishment that has ignored us for so long has now been given reports that they asked for – supporting what patients have been saying. We also have a growing internet base and forums and platforms to communicate with for growing our base and organising and educating.

    I actually view this as finally getting advocacy gold. They basically handed us the stick to hit them over the head with. I think this all aligns us to actually finally be able to get organised and get behind a common cause in a focused way. This is something we have never had. We will just have to find new and improved and growing ways to hit them over the head with it. We have to get thinking.

    My biggest concern though – if I am honest is that people don’t get behind common causes well or seem to in our community, and that has to change. I think it is our biggest hurdle now. This is where I am really worried because no matter how hard some might try – there is a “oh that won’t work” coming from somewhere else and it is really destructive and divisive and would kill any cohesive group that is floundering around trying to find a way forward. If that continues everywhere we may as well not bother trying to push out of the blocks! We can just wait another half century…

    So I’m with Jenny and Simon in making efforts and getting louder and bigger and getting more numbers….

    We have to try..

    WTF we got to loose!

    • Simon McGrath says:

      I agree we have been handed a stick, nice analogy. But we have to pick it up in numbers and use it to make things change.

      • Mac says:

        Agree with those two comments. These reports are as much political tools as scientific ones, and we have to use them as such.

        It is the start, it is an opening, however flawed. It is not the final result.

  17. N.L says:

    Vert interesting blog jennie and first one i’ve read if i’m honest.
    I agree with Simon’s views and like A.W. I am positive that the tide is turning for us with regard research and the forums for support and advice.
    I too have witnessed first hand how disheartening it is getting this community to unite. It seems that every step forward or idea is met with trepidation and unwillingness to get involved. So many sit on the fence and say “that will never work” without actually trying it. Behind every success is a thousand failures buy that doesn’t mean you should just sit back and leave it to the same people to keep pushing forward for awareness and raising money for our unified goal of medical research.
    They same people that sit on the fence and won’t get involved are the people that give out about us being perceived as lazy….well get up and do something (metaphorically of course..damn pem!). Use your voice in a positive way for this community. Encourage, support and promote others efforts. Don’t be afraid to share ideas without the fear of backlash. Have your say on p2p and iom. But most of all get behind your community we are all we have!

    • Jennie Spotila says:

      NL, AW, and Simon are doing a great job of teeing up my next couple blog posts! I had hoped to get P2P part 2 up this week, but I’m preemptively resting for a funeral on Saturday. But stay tuned everyone. I’ve got some comments on how to use the P2P report, as well as some of what I see happening in the advocacy community at the moment.

      • N.L says:

        Oh can’t wait. Looking forward to it x

      • Simon McGrath says:

        Very much looking forward to this

      • Anonymous says:

        I am sorry for your loss.

        Funerals etc are serious resource zappers – please take care of yourself! (I am glad you are preemptively resting.)

        Take the time YOU need before you get back to this.

  18. Incognito says:

    P2P (in)Jury Model??

    In June 2014, Professor Mark Baker, the Director of the NICE Centre for Clinical Practice, said that NICE guidelines for ME/CFS are limited in their scope; they do not meet patients’ needs; and they do not meet NICE’s needs. Baker said too that the guidelines fail to address the real issues in ME/CFS. He said the guidelines (including CBT/GET) are based on little evidence, and they have had a disappointing impact.

    In 2011, Professor Ola Didrik Saugstad–an internationally recognized and internationally honored Norwegian physician who also specializes in medical ethics–severely criticized CBT/GET.

    Saugstad said that the only therapies offered to ME patients are those (CBT/GET) which have been developed by individuals who do not believe that ME is a physical illness. Saugstad said he was very much against cognitive behavioral therapy and graded exercise therapy and that there are studies that show that these therapies make ME patients worse.

    Saugstad added that those who advocate CBT/GET have often never even met those who are most ill, and that he (Saugstad) believes it is a violation of medical ethics to prescribe treatments/therapies to patients whom one has never examined.

    Saugstad said too that it is a serious abuse and violation to force psychiatric treatment (CBT) for ME and that ME patients are treated as badly as individuals in the 1950s and ’60’s whom the medical community lobotomized.

    In response to such criticisms, Assistant Health Director Bjørn Guldvog apologized and said that ME patients do not have adequate healthcare.

    Thank you for all your work, Jennie.

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  20. Kathy D. says:

    Calling us lazy is so absurd when probably all of us were overachievers before we got sick, and many of us do as much as we can with limitations. It makes my blood boil.

    I agree with Jim E. that the “psychological” experts, insurance industry and health officials in government have a united front on this disease. We need to expose it.
    The money has a lot to do with it. The government doesn’t want to pay more for research or for treatment through the federal governmental medical insurance programs and the insurance companies do not want to pay out more for medical care.

    So their solution? The absurd CBT and GET. Exercise therapy costs the insurers and government nothing. A short term of CBT costs little. Disability insurers and those who administer Social Security disability don’t want more claimants. Medical insurers don’t want more claims to pay.

    I do think we need a national organization or network with a name and a list of five or so demands that we agree with, although we can disagree on other things.

    Then we can go to congresspeople in different states with written demands. People can add on their own stories. We could do national and local emails.

  21. Anne Ö says:

    Thank you Jennie for your outstanding and relentless work. What would we do without you?

  22. cort says:

    I disagree with the tenor of this post. I, too, did not see many changes in the final P2P document either. (Since some of the comments were read before the draft it’s possible they were included.) I too was disappointed that no dollar figure was provided.

    It’s clear, though, that implementing the reports recommendations would require a vast increase in federal funding for this disorder. When a report states that X,Y and Z need to be done -that’s a pretty explicit request for more funding.

    Focusing primarily on the negative aspects of this or any other report ignores the many, many positive things found in the document and it leads to many of the comments found associated with this post suggesting that the report was some sort of whitewash.

    This federally produced report asserted that many things that advocates have asking for – dreaming about for years really – should be done. That’s an amazing accomplishment that should not be ignored no matter what failings are present. To ignore promotes the conversation that no one cares and nothing will ever been. Given that we have two federal reports strongly urging the federal government to do a lot more – that’s clearly not true.

    • Jennie Spotila says:

      Cort, please read my more recent post that talks about the positive things in the report and how we can use it going forward. I don’t think it’s fair to characterize my approach this way when you have not read the full package. I will add a link to this post to go to the more recent one so that others realize it’s a two part deal.

      • Cort says:

        I read the recent post before I posted my comments…and I stand by my comments.

        While I appreciate the insights into the problems present – some of which I didn’t pick up on – until I read it, I’m not surprised that the post listing the failures of the report came first and was much more extensive than the post listing the positive aspects.

        While I missed some of the negative points of the document that you picked I found many more recommendations than you did. I think I looked harder!

        I’m also not surprised that there are more comments for this post – the one outlining the failures of the document – than for the post outlining the positive points.

        I assert that this is a community-wide issue; that in general we as a community are much better at and more used to finding issues with something than at acknowledging and celebrating positive steps forward.

        • Jennie Spotila says:

          Cort, if you found more action items than I included in my 65 item list, please let me know. I will gladly add them to the list. The report card was my attempt to boil the whole thing down to its essence on a single page that would be easy for advocates to use. But I didn’t want to lose sight of all the other recommendations, thus the 65 action item list.

          As to whether you “looked harder” than me, I can’t judge that since I don’t know how much time you spent on it. I can only say I invested all the time/energy that I could in digesting and analyzing the report.

          I’m not sure that the length of a blog post, or the order in which they appeared, or the number of comments are really the right metrics for judging my perspective or analysis or attitude. Like you, I found many things in the P2P and IOM reports that could be of great help to our community, and I also found things to criticize. I think it’s reasonable for me to talk about both sides on my blog. Talking about places where the reports fell short in no way lessens my commitment to moving forward.

        • Simon McGrath says:

          I assert that this is a community-wide issue; that in general we as a community are much better at and more used to finding issues with something than at acknowledging and celebrating positive steps forward.

          I fear that you are right about that. And wonder what the best way forward is?

          I have a dream (…) of a single united mecfs patient campaign, focused on something we can all agree on, without all the bits we can’t. For me that would be something really simple like more NIH funds soon for mecfs biomedical funding (say $25m for next year as a downpayment on proper funding). But I fear that’s just a fanciful dream and that particular suggestion won’t ignite and unite the patient community.

          Wish I knew what to do, both in the US and the UK; we face much the same challenges.

  23. Jerry Seidel says:

    Warning to Fibromyalgia patients.
    This is information on a clinical trial. It might as well be called PACE 2 for fibro.
    A clinical trial to use CBT for medically unexplained symptoms – MUS and fibromyalgia. The trial is called ‘PRINCE Secondary Trial’.

    The main contact in the trial is Prof Trudie Chalder
    She was part of the PACE trial. You can see here,

    CBT is based on the premise that you are not physically ill. Now they are harming fibromyalgia patients and patients with MUS by using CBT which many CFS patients say is harmful to them.

    Look at the Keywords provided by King’s College London:
    medically unexplained
    non-cardiac chest pain
    PRINCE Secondary Trial

    “Persistent Physical Symptoms (PPS; also known as medically unexplained symptoms – MUS) is a term used to describe a range of physical health difficulties that people can experience and for which the exact cause is unclear. Between 20 and 40% of patients in primary care, and about 50% in secondary care experience PPS. PPS are associated with profound disability and high health care costs, and if left untreated the prognosis of these patients is poor. There is an accumulating body of evidence demonstrating that cognitive behavioural interventions can reduce levels of symptoms and improve functioning in patients with PPS. A pragmatic RCT was designed to evaluate the clinical and cost-effectiveness of a joint clinic plus cognitive behavioural therapy (JC+CBT) versus treatment as usual (TAU) in the treatment of patients with PPS. The trial will focus on patients with a variety of symptoms (e.g., non-cardiac chest pain, fibromyalgia), in three clinics (i.e., neurology, cardiology, and rheumatology).”

    Sponsor: King’s College London Identifier:NCT02426788
    First received: April 22, 2015

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