Controversy continues over the Senate appropriations committee report’s recommendation that the CDC’s CFS program funding be eliminated for FY 2016. We have certainly debated the merits and faults of the program from just about every angle on this blog.
But the real question is: Why did the Senate committee recommend the elimination of funding? I can offer only speculation.
Hypothesis #1: Budget cuts were needed and ME/CFS was an easy target. This is the explanation most likely to be offered by the committee staff. It doesn’t really make sense though, at least not on a Division level. If you look at the chart on page 59 of the report, you will see that CFS was the only category in the Zoonotic Division to see a decrease from FY2015 funding. Every other category was kept stable or increased. I certainly agree that we are an easy target for cutting, given the void in our collective efforts on the Hill. But the overall Senate recommendation for CDC funding exceeds the budget for 2015, and $5 million is almost invisible when compared to the overall budget. Why were we singled out?
Hypothesis #2: Someone wanted to cut it because ME/CFS is unimportant. We are certainly well-acquainted with the misconceptions about ME/CFS. And it is entirely possible that someone on the Senate subcommittee ascribes to those misconceptions. But ME/CFS has been in the news more in 2014-2015 than at any time since the XMRV controversy. If no one working on the subcommittee (including staff) has heard of the IOM report, then we have great cause for concern, and our short-term prospects of increasing our visibility seem low.
Hypothesis #3: Someone wanted to cut it because the CDC CFS program is not producing the right results. This would be interesting. Perhaps there is a staff member who knows more about ME/CFS than we expect, and recommended cutting the funding because the program is doing more harm than good. If this is the case, this person could be a potential ally in a powerful place.
Hypothesis #4: CDC didn’t bother to fight for the program. I don’t have facts to back this up, but it seems like a foregone conclusion doesn’t it? At the highest levels, CDC has paid little attention to (and expressed little love for) the CFS program. There are two exceptions to this: when CDC got caught misappropriating funds from the program and when the early XMRV findings suggested it was a blood borne human pathogen. Other than those two occasions, CDC leadership has not been particularly interested. But even if CDC failed to fight for the funding, that doesn’t explain why it was cut.
Regardless of the reason(s) for the committee recommendation to cut the funding, the ME/CFS advocacy community is responding at full volume. There are multiple email and petition campaigns underway, as well as meetings in the works. We won’t know until September if these efforts are successful. But there would be some interesting consequences to success.
Consequence #1: Community seal of approval. To put it bluntly, the CDC’s CFS program has NEVER had the full force of the ME/CFS community on its side. Never. I am sure that CDC leadership is surprised, and Dr. Beth Unger must be gratified to be receiving such vocal support. This campaign in support of program funding opens a new chapter in CDC/community relations.
Consequence #2: Imprimatur. How will CDC interpret the ME/CFS community’s sudden turn around? I think it is unlikely that anyone at CDC will look at the complexity of the community’s discussion. Most people who are supporting the program funding are doing so because of the multi-site study, or just the basic principle of “don’t cut our funding.” Very very few advocates are endorsing the CDC’s education campaign. But this distinction will not be acknowledged by CDC.
Instead, I predict that CDC will use the advocacy support as an imprimatur on all their ME/CFS efforts. They will be able to say that the program has the vocal support of ME/CFS patients and advocates. When they roll out the latest education materials, when they discuss the multi-site study, or when they make presentations about the program as a whole, CDC will say that the ME/CFS community supports it.
Some readers may say that CDC would never twist the facts this way. But all’s fair in politics. NIH twisted the facts of the letter signed by 50 ME/CFS experts in support of using the Canadian Consensus Criteria. In his August 11, 2014 letter to Representative Zoe Lofgren, NIH Director Dr. Francis Collins said, “This is a critical, unmet need in the area since there are very few ME/CFS clinician-scientists pursuing this line of research (for example, the advocacy groups identify approximately 50 ME/CFS clinicians and scientists world-wide who are considered experts in this field).” Do you see how skillfully this was done? The fact that 50 experts signed the letter, combined with advocates touting that letter as definitive on the CCC, was twisted and fabricated into the statement that advocates identify only fifty experts worldwide. Masterful politics, and CDC excels at this too.
Consequence #3: Bargaining chip. There is a powerful and positive consequence if the program funding is continued. ME/CFS advocates will be able to claim that we got the funding restored, and that gives us power with CDC. If we can get funding restored, we can just as readily get it taken away. I hope that the leaders of the current advocacy efforts realize this.
The petitions and letter writing and meetings may be successful in securing program funding in 2016. This is being done, as far as I know, with no advance promises from CDC or Dr. Unger to make the changes we want to see (particularly in the education campaign). CDC could take the money and run, using this campaign as a shield for whatever they plan to do next. Or advocates could use the success to get CDC to come to the table and work to improve the program.
If flexing the advocacy muscle succeeds, then we must follow through to ensure the program improves. And if CDC fails to do so, then we should flex the muscle to end that funding in 2017, or at least attach so many strings of Congressional oversight that CDC has to comply.
Because one thing is for certain: if this is the beginning of a new chapter in CDC/community relations, that the chapter must benefit ME/CFS patients. Otherwise, the whole effort will have been a waste.
This is the big question….How could they simply remove an entire, if quite small (by their standards) …program? My guess is a combination of possibilities one or two. I can’t imagine #3. Even those people who don’t appreciate the program can at least agree that it’s light years better than when Dr. Reeves was running it – and that it the multi-site studies present real possibilities.
I wouldn’t take the very people mentioning the education (story?) campaign to mean much. It’s simply low hanging fruit. I imagine that if most people watched the video’s of the ME/CFS experts on the site they would support the campaign.
I don’t mind if the CDC uses our efforts to show the community is behind Dr. Unger’s efforts – I’m behind Dr. Unger’s efforts! ” 🙂 – but I do think it would be a good idea to come up with a list of requests that the ME/CFS community has for improving the CDC program.
I would put replacing the ED on the top of the list – I think it’s inevitable that that will happen, though.
I would request that the Toolkit not be reposted on the site until after the reports from the multisite study are finished that that the ME/CFS experts in the study play a major role in writing it. I don’t know if that’s possible. I imagine that the CDC brass weren’t particularly happy at the CDC spending so much money studying experts that it may consider to be kind of quacky…
It’s interesting that you didn’t put the counterpoint to #3 up there: that somebody on the Hill doesn’t like us and the attention we’re getting and got a staffer to eliminate the only program they could; i.e instead of someone supporting us by removing the CDC program someone was out to get us. I think this is probably not likely but I imagine it’s a better possibility than #3.
Actually, I think that’s a variant of #2: someone cut it with malice, vs someone cut it from ignorance.
Would it be wise to call the Senate appropriations committee which oversees the allocations of CDC funds and ask why ME/CFS research was omitted from the budget? It might shed light on the information they relied upon to make that decision. https://www.govtrack.us/congress/committees/SSAP
It is certainly possible to contact staff of appropriation committee members. The Senate (and House) are in recess during August which is why Jennie had previously said that the Senate won’t do anything until September about this, if then.
Whoever gets information – please share it here so that everyone gets the information (especially those who don’t have the bandwidth to take this on).
All I can say is that this was attempted.
Someone posted on Phoenix Rising that some people from Massachusetts CFIDS are in touch with the committee staff.
I would consider this to be good news, Roy. From what I can tell, that patient group supports international collaboration. That is very important, in my opinion — given the current state of affairs in this country.
Mass CFIDS initiated a letter asking that funding be restored. That letter has been signed by NJCFSA as well as by IACFS/ME and other groups.
One possibility is the CDC higher-ups don’t even think they should be involved in CFS research, just as they aren’t involved in researching many other diseases. The CDC came into CFS because of outbreaks that looked like a new environmental exposure, such as a virus. They determines it wasn’t early on. But it was too late, news media was reporting it likely was. That makes it a CDC public health concern. So, absent any other medical specialty professional organization doing it, the CDC set up criteria and assigned someone. Of you read “Osler’s Web,” you will see the contempt the few people at CDC who were trying got for doing their work on CFS.
As noted in this blog, only when there is a possible threat of transmission does CDC put CFS on the front burner. Otherwise, it’s crumbs. Some there I believe are earnest in their desire. Others may not care either way, thinking it’s not a disease CDC should be doing because it doesn’t fit the normal public health things they due as part of their mission, but they know no one else is doing it. So as long as it’s not much, it’s not hurting for CDC to do some work on it. Some there may feel it doesn’t fit in CDC’s mission and to figure it out properly would take money from Ebola, Lyme, and others that do fit their mission, so best to just get CDC out of CFS research.
Could the increase in private funding make CDC decide they aren’t the only ones any more, so there won’t be a big loss if they stop!
I’m just speculating.
CDC is more like firemen who come out when there is a fire or smoke causing suspicion of a threatening fire. So while I and maybe CDC questions whether it’s in the right CDC department, some at CDC may question whether CDC should be researching it at all.
I hope the funding is continued and more given to CDC because I’ve seen a change since Unger took over. And they are the only agency with some credibility in the medical industry that puts out comprehensive information or as the resources to do the type of study they are doing now, with lots of patients, so the results will have more influence.
People always cite private funding as “saving the day” for ME/CFS and other medical conditions. Private foundations and large corporations are superb at public relations but fact of the matter is, government funding is still the #1 source of research funding for almost all medical conditions and likely will also be so for ME/CFS. Private foundations, with rare exceptions (e.g. Howard Hughes Medical Institute, which funds scientists for years and not projects), often do not have the money to sustain long-term projects and sometimes subject scientists and researcher to conditions which may be restricting. Corporations usually don’t get involved unless there is a profit to be made and much of the basic science (government funded) has been figure out already. This is what I have observed and what my mentors, scientists excellent in raising funding, have told me.
To repeat some of what I wrote too late in your previous blog’s many comments and add to it, Jennie, — 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, after 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.
I was never sure why it happened and thought it would be best not to even try to find out. I thought it was Sen. Harry Reid’s legislative aide just not doing her job well, but thought it better to be diplomatic since I didn’t want to alienate her and we had no alternative senator on the committee. So I talked to fellow patient/activist Jerry Crum (deceased) in Nevada and explained the situation to him. He stimulated grassroots activism in the state and then there was a new legislative aide in Reid’s office. Sheila was good.
I’m not sure what the effect of all the present activity will be, but I find it personally encouraging that there are this many people who are interested and passionate about activism. I have found one prolific person to be exasperating+; but you do have those blog policies. 🙂
And those policies apply to everyone, Roy. : )
All more cerebral analysis aside, I still think it’s because we don’t have a “catchy” name for this disease. Everybody still thinks we’re just talking about “chronic tiredness”. Heck I just got back from my doctor and he is still looking at the regular run-of-the-mill causes such as anemia, low Vitamin D, thyroid function, blah blah blah, even though I again reminded him I have CHRONIC FATIGUE SYNDROME. Like talking to a brick wall. We need to elevate the importance of calling this something that sounds as 0minous and debilitating as CFS/ME truly is.
Its a nasty game. The CDC does not even wipe its nose w/o the blessing of industry and the lobbyists who fund politicians who fund the CDC. Still, I think its important that you all push for ME/CFS funding to tell them “We’re in the game and we’re not going away until you get accurate info to America’s physicians.”
All the advocates for ME/CFS are. “Up in arms” about this, hopefully we get a LOT of attention! I get the rolling of the eyes, and the uninformed comments about “not believing in CFS” at least twice a week from regular people or health care professionals, and I’ve been sick with this at least 29 years! How the CDC can keep ignoring us is unconscionable. Keep up the good work Jennie, thanks for keeping me up to date on all this. I hope this made sense (I’m exhausted)!
I have an inquiry in to my contact in Sen. Tammy Baldwin’s office (Tammy is on the Labor/HHS/Education appropriations subcommittee). I will post info when I hear something. And will stick like a junk-yard dog until that happens 😀
Thank you, again, for an intelligent post on this complicated subject, Jennie.
Tina – what CDC is SUPPOSED to be doing is AT LEAST keeping track of the disease. I think that frustrates me more than anything else. I don’t care if they do studies. I do care that they are not doing demography.
Admittedly, their ventures INTO demography have been terrible. But the bottom line is their insistence that there have been no cluster outbreaks (just outbreaks of diagnoses – that is, we patients are shopping for doctors who will confirm what we think – a stunning insult to us and to our doctors) – has led to the unchecked expansion of this disease.
Jen Brea should not be sick. Many others who got sick in the last few years (when I believe there is another outbreak) should not have gotten sick – or should at least have been cared for – because it SHOULD HAVE BEEN KNOWN that there is such a thing as M.E. cluster outbreaks. Cases of this disease (however defined) should have been reportable (then you sort it out). And more should have been done with the first set of outbreaks than … well … going skiing (or hiking; depends on the source).
It is CDC’s fault that this disease is now claiming a whole new set of young people’s lives to ruin – 30 years after Rockville, MD., Raleigh, NC., Incline Village, Lyndonville, Cherry Hill, etc. etc. etc. etc.
No, I don’t really want them doing studies. For one thing, if all they are thinking of is their publications, they won’t publicize what they know until they can get it published. Reeves was so bad at that that he left the CDC estimate at 50,000 patients after he had already told us at CFSCC in 1997 that he now believed it to be 500,000 – because he was waiting to get an article about it published (for some neurotic reason, medical journals will not publish things that have been in the public eye – that has been helped somewhat by the rise of e-journals). By the time he finally got his study published, Jason’s 1999 study was out with an estimate of 800,000 (which would be over a million now) – most researchers took Jason’s estimate and Reeves (and the CDC) got buried.
Then there’s the little matter of the efforts to get a commercial contract for the Reeves questionnaires …
ALL THAT SAID, how can we let them zero out funding for CFS without a peep?
There’s your dilemma.
Though I have to say that after reading these comments, I have a new possible reason for CDC not caring if the CFS program disappears – Reeves is dead. Reeves’ father WAS somebody.
Roy – wish you were still lobbying.
Possible hypothesis #5: “CFS” is being moved out of the viral division to somewhere else within CDC? If I remember correctly (always highly dubious these days ::grin::), data from the multi-site study has been collected and they are working on the paper at this point. Given the IOM report, P2P report and the emerging info from the multi-site study, it may be that a total overhaul of HHS’s efforts on this disease are in the works. I appreciate this is a wildly optimistic scenario, but I think plausible especially given the peculiar fact that the whole appropriation has been eliminated rather than simply cut.
Until someone has actually spoken with Beth Unger and the Senate appropriations committee staffers to find out why they eliminated funding, I think this latest tempest is getting a little ahead of the cart. I prefer to act based on definitive knowledge rather than speculation. I simply haven’t the strength to borrow problems from the future that may not, in fact, actually be problems.
Moreover, as a community we are Too. Damn. Reactive. rather than engaged and proactive. I realize that without a national advocacy organization it probably can’t be helped. But at some point we have got to develop a cohesive strategy to our advocacy rather than reacting to every little move HHS makes with mostly pointless petition and letter writing campaigns.
I thought about that possibility too but we shall see.
Agree about being careful with reactions. It has been tragically ironic in some ways to see people pick and choose their positions, instead of supporting the clinicians and scientists doing the work and the science itself. Some people are up in arms about the IOM report and now the CDC funding when both the IOM and Multi-site study had/ have large numbers of ME/CFS specialists behind them.
I am concerned that science and the truth will lose out to people clinging so strongly to their views that they lose the forest for the trees.
If CFS is being moved, then why does the House committee report keep the funding in the Zoonotic branch? I searched both reports and couldn’t find CFS mentioned anywhere else in either one.
Still, it is possible. It’s possible the House committee doesn’t know, and it’s possible that it’s being subsumed within another program without being explicitly separated out. This would mean Dr. Unger is out, unless she’s moving too.
I agree that it is far better to work from facts. That’s one reason why I emphasized that I’m speculating. I really hope that the advocates meeting with Senate staff will ask these kinds of questions and then SHARE THE INFO. The burden for keeping the community informed cannot keep falling on the shoulders of individuals. It’s not sustainable.
The entire time CFS has been around (since 1988) it has been housed in one or another department within the division of viruses. In the 1990s it was listed as one of the top five new and emerging infectious diseases. Similarly, at NIH it was housed within NIAID (the National Institute for Allergies and Infectious Diseases), despite the fact that NIAID’s spokesperson for the disease, Stephen Straus (their “expert” on EBV and then CFS) believed that it was psychosomatic and said that frequently in interviews with the press.
CFS came along just after AIDS was acknowledged. Insurance companies took a bath on AIDS because they had not prepared for the contingency that (surprise surprise!) there might be a disease we didn’t yet know about. I believe they were determined not to get similarly caught with CFS.
CFS was portrayed by CDC from the beginning as the consequences of stress – specifically, Yuppie White Women paying the price for “trying to have it all.” [Never mind that the stress of being a single mom with two kids to support and no health insurance is a lot worse than being a Yuppie …] Not until Lenny Jason’s 1999 study showed it was an equal opportunity disease did they give that up.
Hillary Johnson did a good job showing the level of hostility on the part of (mainly male) bureaucrats at CDC towards women who had CFS. Things like taping insulting cartoons to their doors. Hahaha. And – given that over 90 percent of Congress is male, saying it is a women’s disease meant nobody in Washington was scared of it. It also helped marginalize it.
The first presentation I heard made by Reeves at CDC on CFS started with a slide of a woman in Edwardian dress lying back on what used to be called a “fainting couch,” with her forearm delicately draped across her forehead.
British psychiatrists (many of whom were supported by multinational insurance companies) have polluted the literature with their own definition of “CFS” or “CFS/ME” that basically requires six months of significant fatigue with no physical explanation. They end up with data sets that have a lot of patients with primary anxiety or depression, they write lots of articles, they cite each other’s work – and the crux of it is that there is a very large body of literature out there on “CFS” and “CFS/ME” that’s like a parallel universe – it only talks about the disease as “inappropriate illness beliefs” to be corrected with Cognitive Behavior Therapy and Graded Exercise (CBT/GET).
These psychiatrists have been frequent advisors to CDC’s CFS program. And they were good buddies of Straus at NIH.
So – follow the money – with the insurance industry determined not to have to pay out for CFS, and with Washington and Atlanta presenting it as a silly disease of silly women, it has been effectively buried. With the complicity of the mainstream media.
I would be surprised if they are putting it somewhere else. I hope it does NOT go in rheumatology because that gets it confused with fibromyalgia.
I agree with many people like Libby Boone.
Advocates have been working hard to get the CDC to take down their website as it us totally wrong.
Also get rid of that “Tool Kit”, it is Rubbish.
I welcome the desolation of CDC and anything to do with CFS.
Meghan
I am not completely well versed on ME/CFS. I am interested in learning from your plight of resistance to change public policy because I have advocated for years for those disabled after exposure to bio-contaminants in water damaged buildings.
I’ve spent a lot of time on the Hill. I know why the resistance within the CDC, et.al., has run high for these illnesses – many of which manifest in symptoms similar to CFS. Its because liability would be greatly increased for stakeholders of moldy buildings — insurers, employers, property managers, real estate brokers, landlords, sellers and builders. (See recent interview for a WorkCompCentral article on the subject for an overview: https://katysexposure.wordpress.com/2015/03/18/acoem-takes-down-position-paper-commonly-used-to-defend-against-mold-claims/ )
But why is the resistance running so high for CFS? Is it because of basically the same reason it is over the mold issue? Liability would be increased for causation from excessive exposure to naturally occurring (fungi, bacteria & viruses) and man-made chemicals? What causes CFS? What is it that financially threatens someone if policy was changed over these illnesses?
Ooops – I posted my reply to this on the comment just above. Why? It was originally classified as one of the top five new and emerging infectious diseases. But insurance companies were very unhappy with that, and nobody at CDC really cared about the disease anyway, so it got buried inside one or another division associated with infectious diseases (for years it was in the office of viruses and exanthums).
There has always been a great deal of irony in CFS being housed with viruses when Reeves insisted for years it had nothing to do with viruses … but I think they leave it there because it stays buried there.
Hi Mary,
Thanks for your reply. This is what I am trying to understand:
1. What do people with CFS find as the most logical causation of their illness?
2. Is there some entity(s) that would have financial liability if the causation of CFS was acknowledeged by the CDC, et.al.?
3. Is there money to be made while denying the causation of CFS?
This is a complex issue. Keep in mind that there are over one million Americans with this disease. There are people with the diagnosis “CFS” who do not have what I have; conversely, there are 850,000 adults who have it and are not diagnosed. So there is a lot we just don’t know about it.
With NIH providing at most $6 million/year for studies (many of which have nothing to do with us), and CDC doing terrible demography on a similar budget, it will be a long time before we know things we should already know about this disease.
We joke that CDC stands for the Center for Disease Coverup and Propaganda. Because that is the role they have played for 30 years with this disease (dating from before it had the stupid name CFS). But it isn’t really funny, is it?
I know young people who have died from heart attacks in their sleep. I have lost older friends who also died too young of heart attacks. I have lost friends to rare leukemias and lymphomas that we believe are connected to the disease. And then there are the suicides. It breaks your heart.
There are patients who got sick as teenagers. They never went to college, never dated, never had a career, never had children – they are now in their 40s, and they have never had a life. CDC and NIH (and NHS) have a lot to answer for here.
Even more, they will some day have to answer for all the young people whose lives were destroyed by the false diagnosis of CFS as a “psychiatric illness” – what looks like illness is really deconditioning caused by “false illness beliefs,” to be cured by psychiatric therapy (CBT, Cognitive Behavior Therapy, and GET, graded exercise therapy, conducted simultaneously). They have claimed. And they have destroyed so many lives.
Aside from Sophia Mirza who died from the damage done to her in a mental hospital, there are many severely – and I mean SEVERELY – I mean cannot stand anything touching their skin, have feeding tubes and oxygen tubes, live in darkness all day long – ill because they were forced to do exercise to dance to the psychiatrists’ tune.
There are cases like Karina Hansen in Denmark, where she is held a virtual prisoner in a mental hospital, neither her family nor her lawyer permitted to see her. Some people have a lot to answer for that. Right now, we can’t even get Amnesty International interested in this.
These psychiatrists (one of whom was KNIGHTED) definitely have an interest in keeping the truth about this disease buried, keeping the truth about what happened to these young people buried.
In the US, there are kids who are taken from their homes and put into foster care for the “sin” of having “CFS” – and not being able to exercise. For being in a wheelchair. SO many laypersons in school boards and schools all over the nation believe THEY know better than the patient’s doctors, that THEY know what “Munchausen’s Syndrome by Proxy” (making your child sick so you get attention) looks like, or “factitious illness.” And they have been utterly cruel. They have a few things to answer for.
I have been lucky; I have been in a lot of studies. So I know a lot about the version, or the subgroup, or whatever, that I belong in. I also fit all definitions for Myalgic Encephalomyelitis (ME), and formally, that is the diagnosis I have. (They are believed to be synonyms – they are not, but ME was not diagnosed in the US at the time of the first major cluster outbreaks of the mid-1980s, and most American doctors don’t know ME exists.)
In my case, something caused my immune system to go fubar. It appears to have happened in a cluster outbreak of EBV – I think a particularly virulent STRAIN of EBV – that swept the university where I was a tenured professor in the fall of 1990. Three professors from my department alone got sick.
After that – my disease is characterized by immune defects and active or reactivated viruses, including HHV-6 and CMV in my spinal fluid. I do well on an experimental immune modulator/antiviral that I have to pay cash for (and the price may have just gone up 267%, which will price me out – and I will go back to being a bedridden invalid).
I believe that off the pharmaceutical, I have viral encephalitis. perhaps encephalomyelitis (technically encephalitis plus meningitis). I have all the physical symptoms, and as mentioned, viruses known to cause it active in my spinal fluid. Makes sense to me.
We talk about doors – there seem to be different doors into this disease. Or are these different diseases? We don’t really know, but I tend to think different doors. There are definitely contamination doors – mold, toxins, vaccines, parasites, blood transfusions. We do not know enough to know if what happens is THOSE events make your immune system fubar leading to — the same thing I have. OR, the different doors represent different etiologies altogether.
I think the majority of patients with ME come in through the viral door. Again, not enough evidence to know.
And I should mention, FWIW, that I was one of the people to test positive for the retrovirus “XMRV” in the study published in Science in 2009 – I was positive by blood serum and by antibody. There is later testing that was not conducted quite so carefully, but this was pretty careful testing. If XMRV is just a lab contaminant, then what do I have antibodies to? [You can’t get antibodies to a lab contaminant.] The answer may be a different gamma retrovirus, even an endogenous one. Did it cause the immune problems? Or, did my fubar immune system wake up an endogenous gamma retrovirus and turn it active, making things worse? Who knows? No money for research.
For me, this disease is so much about immune systems and diseases (if you include blood tests, when off meds, I test positive for EBV, CMV, HHV-6A, HHV-7 and 3 strains of coxsackie B – add in the gamma retrovirus and, as one researcher once said, my blood is something of a toxic stew. [And here me, friends, if I lose Ampligen, all of that is going to come back again with a vengeance.]
I had the disease in a progressive form. No matter what I did (or more to the point, didn’t do), my health kept spiraling down to the point that I was a bedridden invalid, just barely able to get back and forth from the bed to the john, and that was it. had to lie in a darkened room (I was lucky in that I could listen to movies, though I could not watch them) because light was so painful. Pain, confusion – all bad.
SO – I believe that the money trail leads mainly to multinational insurance companies. The British psychiatrists who have advised CDC’s CFS program almost from Day One all work for insurance companies – UNUM, Scottish Provident, and Swiss RE. It is definitely in the interests of insurance companies to bury the probability that over 250,000 Americans are so disabled they are homebound and/or bedridden (out of the over 1 million sufferers nationally), and have been left in that state FOR DECADES. That over 50 percent of us cannot even work part time.
And now, you have a lot of people in government – particularly the UK and the US – who have danced to the psychiatrists’ tune. Despite our disease being housed at CDC with viruses, and – for most of the time at NIH, also with viruses, until it got placed with women’s health (which has no budget), because the scorn with which the head of NIAID viewed our disease was just too strong. (Tony Fauci, still there.)
For me, the key to the disease as I have it is that it occurs in cluster outbreaks. It is contageous at some early phase. (It spreads much like polio did – hits a place here, then a place there, and there are alway some who never know who they got it from.) I know that there was a cluster outbreak in Cherry Hill, NJ, at the time I got sick, and that a lot of our students came from Cherry Hill. That might explain why four years later, when I utterly collapsed, it was not my doctor in Delaware, but my students at Villanova, who told me what was wrong with me – always with regret to have to give me such bad news. “My mother/sister/girlfriend/buddy acts like you, and has CFS.”
If there is a large subset of “CFS” patients who get this in a cluster outbreak – and, as I believe, a new set of cluster outbreaks occured in the past 5 years – well, there are a lot of people at NIH and CDC who are eventually going to be caught holding the bag, allowing this epidemic to occur without lifting a finger to stop it. Right now, it is embedded in their view of the world that it is simply not possible for us to have chronic viral infections, and there is “no evidence” (not true) of the “itis” (inflammation) in patients with Myalgic Encephalomyelitis (again, not true). As they twiddle their thumbs, more people get a disease that I believe is a life-long sentence.
What would be the relationship between those of us who are cluster-outbreak and those with an onset caused by mold, toxicity, vaccines, parasites, etc? I’m not sure. Perhaps an immune system damaged by one of these events would leave you vulnerable when a cluster outbreak occurred. We may still not have found the true cause.
I speak a lot about viruses. There is really good research on viruses. It is hard to get published, and CDC totally ignores it. So did the IOM, for that matter. I think some people will be pedaling frantically to get out of the limelight when the coverup of THAT comes out.
But, ultimately, I do believe that in the front of the line, adamant that we not be recognized because they don’t want to cough up the dough, is the insurance companies.
Mary,
Thank you for that detailed insight. It sounds extremely similar to the mold issue. Much heartbreak and lives half lived while “learned bodies” add insult to injury by deeming the illnesses psychological in origin.
“For me, the key to the disease as I have it is that it occurs in cluster outbreaks.” Yes, I’ve heard that over and over again. That seems to hold true in the mold issue, too. Mainly that’s because multiple people have been made ill by the same sick building. But there have been those made ill in clusters from something in the air. From years of trial and error, they have been able to determine its fungal toxins.
With chronic inflammatory response symptoms caused by water damaged buildings (CIRS-WDB) people sometimes recover in two to five years after they are no longer exposed. Some never recover and are extremely environmentally sensitive and debilitated for the rest of their lives.
Do people with ME/CFS ever fully recover?
With regard to the CDC, there’s two ways to address them (we call it “Center for Deceit Control and Protection”),
One is to push for accurate science in policy. I call this “Playing Defense” because one has to be able to defend their scientific position.
The other was is to push for the removal of inaccurate science in policy. I call this “Playing Offense” because one is directly challenging their unproven policies and statements.
Would it help if they redid their Tool Kit? If so, maybe that would be a good area to push for change while Playing Offense. In other words, rip that document to shreds by showing where it is erred — and get the known false statements out of policy. You don’t always have to prove you are right to prove someone else is wrong.
I don’t know if this is of interest to you, but this is a paper I co-authored for the International Journal of Occupational and Environmental Health. My co-author was a CDC contractor who was disabled from working in a moldy CDC leased building in Atlanta. Of course, she was denied her Workers Comp because the CDC said she couldn’t prove the causation. (So yes, they have a financial pony in the race to deny the plausibility of mold induced illnesses — when their own workers are injured)
This paper is written from the perspective of the mold issue largely because that issue offers a clear trail of how info of environmental illnesses moves in and out the CDC to medical schools via non-profit medical associations — which are federally funded and heavily tied to the insurance industry. It could be any cause of environmental illness. The systematic method they use to disseminate info to doctors is basically always the same. http://freepdfhosting.com/b16c7060b3.pdf
Thank you, but there is nothing you suggest that we have not been trying – for 2 decades in my case, for 3 decades in some cases. CDC is impervious to change. They may sweeten the language, but in the end it’s the same tired story – no biomarkers, no treatments. And try some exercise – if you’re bedridden, you can always exercise your fingers (I am not kidding).
I think UNUM cut its rejection incisors on us, then moved on to use what they got away with for denying other conditions such as chronic back pain – and Lyme – and sick building syndrome (or the effects of toxic assaults). And CDC dances to their tune.
The one piece of hope we are all holding out for is outside science. We have always had clinicians who were also good researchers, and researchers in good universities, but they were treated like cranks (and the pure researchers threatened with losing their jobs for doing crackpot research – in some cases, like Jonathan Kerr, they did lose their jobs).
But now we have at least two major universities backing studies into the biological etiology of this disease – Stanford and Columbia. And several good private foundations. No, we can’t do this on crowdfunding alone – but now Stanford and Columbia are in with us, it’s going to be a lot harder for NIH to keep rejecting research proposals (or to have a so-called CFS SEP – Special Emphasis Panel – consisting of dentists and dermatologists).
Even if the science is held back by NIH in the US and NHS in the UK, there are other counties doing research. I believe they cannot keep this epidemic hidden forever. I just hope I live to see good science triumph.
I’ll support CDC funding strongly when the CDC: writes a Toolkit that is accurate and up-to-date with the science of the disease; accepts that CFS is a bad, harmful name and starts referring to the disease as ME; moves ahead from 1994 and stops using the Fukuda definition and adopts the CCC definition in its information and its studies; aggressively disseminates accurate information to physicians’ societies and medical schools about ME.
(Again, the Toolkit is not archived; it is right on the site when one Googles “CDC Toolkit.” http://www.cdc.gov/cfs/pdf/cfs-toolkit.pdf. It is on p. 2, in full.)
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I understand the current political scene with sequestration and the political atmosphere on spending cuts for 2106. Congressional ratings are at 19/75% approval. Even with the recommendation of the IOM, for more funding in relationship to patient populaion in other disease categories, MS, Breast Cancer, and HIB, $5.4 million dollars is just chump change.
Once again we are fighting against the GOP s’ War on Women! This illness is called a disease of a thousand names. A Stanford scientist stated: “It is the last major disease known to mankind”. This ongoing war with regards to women’s health care is being waged against women by powerful misogynist, GOP members of Congress and the medical/health/disability insurance industry. This is all too evident from the debates surrounding the passage of ACA, ObamaCare. These forces want to turn back the clock on a century in the women’s progressive movement to equal pay, family leave, boardroom access and heath care.
If you considered the $163 billion over budget of the F-35 fighter plane. If you considered the fact that the CDC funding has received some $3 billion over the past five years yet only a little more than 6 percent of that went toward epidemiology, lab capacity, or programs to fight infectious diseases. The rest has become a giant slush fund that has been used for everything from installing streetlights to improving sidewalks. Consider the fact that the CDC also misspent $22.7 million appropriated for chronic-fatigue syndrome and was investigated in 2001 for squandering $13 million on hepatitis C research. So, $5.4 million is not too much to ask for? In fact, it should be way more.
I came across this commenter’s post on a Lyme blog which I found interesting
Teragram, I have the same feeling. I worked for many years with NIH, and I feel pretty secure in stating that, although NIH is a government organization, it truly exists to conduct and fund research on health issues. It also must abide by the law, but has such an interest in research that, for example, during the 1990s-2000s, it funded a great deal of research on MDMA that had to be conducted by researchers in other countries because of the DEA schedule 1 classification of the drug. If the DEA had had its way, no research would have been conducted at all, but NIH thought the drug was worth investigation and just over the past couple of years, that research has made a strong case for reclassification of the drug so that it can be used again by psychotherapists as a treatment for posttraumatic stress disorder, due to proven efficacy in a clinical setting.
I’ve had an extraordinarily alarming experience with the CDC, and so I am biased to think that it is a far more political organization than one that has a true interest in protecting public health interests.
Comparing information from NIH and CDC that is available online results in a pretty stark contrast: CDC states, absolutely, that there is no such thing as chronic Lyme disease, and that although a minority of patients may experience a “phenomenon” (read: not a real medical problem) they call “post-treatment Lyme disease syndrome,” that Lyme is always cured permanently through a 30-day doxycycline course.
Meanwhile, you can actually find many references to the term “chronic Lyme disease” in NIH-published studies and abstracts. When I noticed that, I thought it was telling. Mind you, “chronic Lyme disease” appears primarily in non-U.S. studies and the language use could be attributed to a difference in medical terminology in various countries; however, if NIH believed that “chronic Lyme” is absolutely erroneous, it definitely would at least insert editorial comment noting that the term is not accepted within the United States or supported by research–and NIH does not do this.
CDC conducts “research” by means of self-reported surveys, such as the National Health Interview Survey, for which I was selected and which resulted in one of the most upsetting experiences of my entire life (if you have 15 minutes to kill, listen to this: https://www.youtube.com/watch?v=-9nabn9wcc4)–and the results seem highly questionable to me. For example, the NHIS regularly issues reports of telephone usage (why the CDC has any interest in this or bothers to relay this information seems beyond the scope of its mission), and it recently also released a truly baffling report that boldly states, against all previous evidence, that less than 3% of the population identifies as LGBT (see: http://www.washingtonpost.com/national/gay-rights-groups-dispute-federal-surveys-estimate-of-population/2014/07/31/6e614f62-1731-11e4-9349-84d4a85be981_story.html). This would only be of tangential interest to a true public health organization, and CDC appears to be specifically issuing pejorative findings relating to LGBT people recently–for example, that gay men like to use artificial tanning and are therefore more prone to skin cancer, and that children of gay parents are more likely to be unhappy (http://www.healio.com/dermatology/cutaneous-oncology/news/online/%7B980b8961-4bfa-4421-81e7-805f20d46de7%7D/gay-bisexual-men-more-likely-to-use-indoor-tanning-at-higher-risk-for-skin-cancer and http://thinkprogress.org/lgbt/2015/02/10/3621375/regnerus-sullins-same-sex-parenting/)
NIH would never issue, and no medical journal would publish, the results of such flawed and questionable survey practices, but CDC issues this information directly to the media. It’s bizarre and irresponsible in my opinion, and that it does this supports the questionable nature of its political stance on Lyme disease.
Research often is ahead of policy, and there’s no doubt (unless you ask CDC, the companies that manufacture the ELISA and Western blot tests, or medical insurers) that this is the case right now with Lyme. Real researchers tend to be open minded and ask questions for which they seek answers; CDC writes policy and enforces regulations based on a number of motivating factors, which include various political affiliations. They are two entirely different branches of government enterprise with different missions.
This similar scenario occured with ME/CFS patients on the infamous ‘Publisher Clearing House’ selection of patients for chronic fatigue syndrome research that mixed cohorts with idopathic depression and ME/CFS patients under Holmes criteria.
CDC research is flawed with their research methodology by sending out by means of self-reported surveys, such as the National Health Interview Survey. This is no way for a legitimate research center to conduct research. Subjective surveys are fraught with errors and has nothing to do with scientific research.
Anyone who doubts the political nature of the CDC might want to ponder billionaire businessman Donald Trump’s recent public confession of bribery:
TRUMP: I will tell you that our system is broken. I gave to many people, before this, before two months ago, I was a businessman. I give to everybody. When they call, I give. And do you know what? When I need something from them two years later, three years later, I call them, they are there for me. And that’s a broken system.
Mary, you write: “now we have at least two major universities backing studies into the biological etiology of this disease – Stanford and Columbia. And several good private foundations.” That’s wonderful news!
Just the fact alone that pretegious universities are even reseaching the biological etiology, should cast doubt on the hateful and hurtful words that these physiological illnesses are just psychological conditions of malingers.
If ME/CFS is anything like the mold, Lyme, Gulf War and asbestos issues; stopping the heartless degradation that is occurring at the hands of misinformed physicians is half the battle to stopping a key element of the devastation caused by the diseases.
Glad to hear you all are making credible progress in spite of the CDC.
Also, UAB has the new Neuroinflammation Fatigue and Pain Lab. Although you don’t know much about UAB, it is high, I think 10th, in NIH research funding grants.
Low NK cell function was a critical reason why the CDC was not able to get away with simply abandoning the Tahoe outbreak, and were forced to dredge up a token gesture of scientific response. Which was a deliberately vague description of ONLY the outward appearance of the disease.
Without this, PLUS the newly discovered HBLV (HHV6A) in our outbreak, THERE WOULD HAVE BEEN NO CONVENING OF THE HOLMES COMMITTEE… AND NO “CHRONIC FATIGUE SYNDROME”
Everything the CDC has done, (with the aid of many CFS advocate-sycophants) has been an effort to spread obfuscation in the hopes that everyone would forget that the syndrome was coined on the basis of compelling immunological abnormalities.
-Erik Johnson
Incline Village survivor. Participant in the Holmes et al “CFS definition patient study-group.
North Lake Tahoe Bonanza
Nov 16 1987
“Incline Victims Show Cell Abnormalities”
Tests Reveal New Clue in Fatiguing Illness
by Chris Fotheringham
NLTB Managing Editor
Laboratory results published this week in a prestigious medical journal confirm that over 50% of Incline Village chronic fatigue patients tested have suffered “dramatic” abnormalities in their immune systems.
Calling it the “most significant finding yet” in efforts to unravel the mystery of the widespread fatigue illness, Harvard researcher Dr. Anthony Komaroff said Monday the report published Sunday in the Journal of Immunology is the first scientific study that confirms “something is wrong with these people.”
“it is really dramatic.” said Komaroff, who is chief of general medicine at a Harvard teaching hospital in Boston.
The article, which underwent nearly 11 months of peer review before being published, was authored by Komaroff, Incline Village internist Dr.Daniel Peterson, and former Incline internist Dr Paul Cheney.
Dr Michael Caligiuri, an immunologist with the Dana-Farber Cancer institute of the Harvard Medical Center, was the lead author for the article which was originally submitted for review in January.
Komaroff says test results reveal an attack on the immune system’s “natural killer cell” which is the body’s primary means of killing virus-infected cells or cells that become cancerous.
Komaroff said “There is a substantial reduction in the number of natural killer cells in patients tested.” He said the study has determined that this “major defense against virus infection and cancer” is damaged in over half of the test cases involving Incline Village patients.
Komaroff first broght his team of researchers to Incline Village in February of 1986 after Incline doctors Cheney and Peterson had documented an outbreak of approximately 200 cases of mononucleosis-type illnesses in the North Tahoe and Truckee area beginning in the fall of 1985.
While the Incline Village cluster of fatigue cases has drawn primary attention in the national media, researchers have found widespread occurrence of the illness throughout the country.
See TESTS on page 9.
http://www.ncbi.nlm.nih.gov/pubmed/2824604
Thank you for posting that, Erik.
It’s so gratifying to see that so much progress has been made in defining this condition:
– Must be really tired (extreme fatigue)
– Symptoms get worse during after exercise (PEM)
– Dont feel well after sleep (un-refreshing sleep)
– Forgetful (cognitive issues)
I can’t wait to see how much progress occurs 30 years from now. Exciting times!!
/s
LOL! What are we worried about?
How do we spot a sincere researcher?
A “sincere” researcher starts at the beginning, for this is how science is done.
I’m still waiting to see a CFS researcher ask Dr Peterson,
“Dr Peterson. What can you tell me about the cluster of teachers at Truckee High school that scared you into calling the CDC for help?
Do you have any idea what that was all about?”
How do we spot an objective and scientific researcher?
An “objective and scientific” researcher selects clues, not because he wants to,
but because they are there.
I’m still waiting to see a CFS researcher ask Dr Peterson,
“What do you know about anything that was there?
Do you have any clues that there might have been something more than a virus?”
I seem to have killed this discussion.
But as long as I’m not blocked, I would like to publicly apologize to my science teacher at Truckee High School for setting my desk on fire.
It was a stupid, childish thing, playing with chemicals, and I regret being so troublesome. But I learned some great stuff in science class.
Possibly the most important thing of all was the concept of “equipoise”
A state of mind where the researcher has no vested interest in the outcome of the experiment and lets the tip of the scales be the deciding factor.
Like everyone else, I wanted the illness to be purely a virus, even argued with Dr Cheney that I would not be a good prototype for this new syndrome, “because of that other thing.”
But then I thought that if that other thing was affecting the Truckee teachers, as it clearly was.. it would be anti-scientific to bias the investigation by leaving it out.
So if Mr. SM is reading this, thanks! You made an impression on me.
-Erik Johnson
Incline Village survivor. Participant in the Holmes et al CFS definition study group.
And graduate of Truckee High School
Go Wolverines!
On the subject of toxic mold there is a long thread on Phoenix Rising entitled “Detection of Mycotoxins in Patients with CFS”. It has gone into the fairly new antifungal treatment protocol of Joseph Brewer MD for nasal colonies of toxic mold. It is not “extreme mold avoidance”.
Erik, It’s tempting to get into Ayn Rand Objectivism and her virtual deification of the hero/martyr that no one will listen to. I’m not a fan.
Dr Brewer is on the Whittemore Peterson Institute’s board of directors
http://cfsuntied.net/2015/05/28/darkday/
History
A darken’d and tempestuous day…it was.
May 28, 2015 ?Khaly Castle
In 2011 I took a trip out to Reno, Nevada, to meet the man who saved my life..Erik Johnson, the Mold Warrior. The trip was cathartic in many ways. Erik took me on “The CFS History Mold Tour”, which encompassed most of the critical locations involved in the inception of CFS as named by the CDC. I can’t even begin to tell you what that was like emotionally.
We also made a trip to the WPI. It was quite a shock to find out later that the very day we were there, Judy Mikovits was being fired.
But just recently, I’ve had a bit of a further shock. It’s been pointed out to me that, according to the Heckenlively/Mikovits book “Plague”, Dr. Mikovits had a mold problem of her own:
“ Annette Whittemore fired Mikovits over the phone at around 4:30 p.m. on Thursday, September 29, 2011. It was an uneventful day prior to the Lombardi brouhaha. Mikovits had left the Whittemore Peterson Institute about a half hour earlier after going to the lab to tell her research associate Shanti Rawat that she would be taking the next day to move David’s posessions out of the Condo they had been renting the past ten months from the Whittemore’s as her Riverwalk condo was being repaired from mold. Mikovits would then be moving her things back to the Riverwalk as her lease was up September 30.”(page 144)
This becomes extraordinarily interesting when you revisit the blog I posted after the trip to Reno. I’ve pasted it below. The original publication date was May 21, 2012.
A small section of the original blog has been removed because, though it was intended to pay homage to an author of a certain book that describes being within the maze of CFS history, the author objected. I replaced that section with these words: “Our trip started at the top of Mount Rose, looking down on Lake Tahoe and Incline Village. It was beautiful.”
Nothing else has been changed, added, or deleted.
In particular, take a look at the section titled “The Sideshow”. You’ll see why I received the second major shock regarding the timing of that visit when I saw the description of Dr. Mikovits’ day on page 144.
It is also interesting to note that Erik had been educating Dr. Mikovits in the story of how mold was an unknown component in the 1985 Tahoe Mystery Illness since the 2009 IACFS/ME conference in Reno, and had given Dr. Mikovits a copy of Dr. Ritchie Shoemaker’s 2010 book, “Surviving Mold” the year before the date of our visit to WPI, in an attempt to engage the interest of CFS researchers into a major factor that had been overlooked.
” Erik Johnson says:
August 16, 2015 at 2:37 pm
Dr Brewer is on the Whittemore Peterson Institute’s board of directors ”
I am not finding Dr. Brewer listed on the board of WPI http://www.wpinstitute.org/about/about_board.html
Well, Dr Brewer has been closely associated with them and is an ‘advisor’
But if you think that is good enough reason for no one to have told him about the mold.
That’s fine too.
Your comment lead me to look at the WPI site and I could not find the Dr. Brewer listed as a board member.
I was not passing judgment on whether or not he should be told about mold.
Roy, if you read Osler’s Web, it is mentioned that everyone ran out and got Dr Crook’s book ‘The Yeast Connection”
Five new health food stores opened up to accommodate demand for antifungal food.
The Incline Village Raley’s devoted an entire aisle to it.
But, to no avail, as our illness was not due to ‘fungal infection’.
All those efforts were ultimately abandoned.
But was rather more in keeping with the concepts of “Dr Mold”, Vincent Marinkovich.
Whose protocols may look vaguely familiar to you now that Dr Brewer is using them.
4594550%26time%3D1428342331%26metadata&access_token=631131187%3AAVJIC1Flow88SbGUo-JIvs4YmHaac2JG2ycpoOYfk7VLkg&title=Mold_Dr.+Marinkovich_Fungal+Illness.docx
http://www.youtube.com/watch?v=oZhh3rH3GYM&feature=related
“There were about 300 in the outbreak of 1984-85.”
“When are the first memories of “This isn’t normal. This isn’t right”?
“Of that I have perfect recollection of that, because the first patient came in, and had been in umm… China.
And had said, “I got this Chinese flu”, and I..you know… “I’m terribly, terribly sick. And then sort of simultaneously with that, a whole number of people became ill in town here with the exact same story, that were existing patients of mine who had been perfectly healthy. And then we started to see this group of teachers from Truckee, that could identify that they had all shared the same preparation room, etc. etc.”
—————————————————————————
I had been under the impression that CFS researchers would have wanted to know any details they could get about this incident.
It was, after all, what got the CDC out here and started the path to this “Chronic Fatigue Syndrome” coined in 1988.
Since they don’t, shouldn’t they stop claiming they want to “Solve CFS”?
-Erik Johnson
Incline Village “1985 mystery illness” survivor.
Prototype for a syndrome that everybody apparently wanted to take over for their own agenda by throwing the original CFS cohort off the cliff.
Erik, are you going to treat everyone to a lecture on Ayn Randian epistemology so that everybody can get pist? 🙂
Dr. Brewer is using nystatin as one of the two nasal antifungals. It’s interesting that Dr. William Crook was using oral nystatin for CFS way back before the Lake Tahoe cluster.
I’ll stick with basic epistemology.
No look – no find.
Erik, you replied to me above, which is confusing, and your link doesn’t work.
I also think it’s better to not go on about toxic mold here.
And this discussion has gone way off topic from the purpose of my original post – why CDC funding was being cut in the Senate committee report, and some of the consequences of the advocacy outcry to restore it.
I ask everyone to keep your comments on topic, please. And thank you in advance for doing so!
The phenomenon that started CFS is never off topic for a CFS group.
If they think it is, the contradiction of the CFS community turning against the origination of the syndrome would be a VERY good reason to cut funding.
More than enough to drop the whole thing entirely.
Under the circumstance of the ‘CFS community’ treating a prototype for this syndrome with disdain, and rejecting the evidence that started the syndrome,
logic, common sense and reason would dictate that the CFS community has defeated themselves and there is no point in continuing this farce.
No one in their right mind would fund such insanity.
-Erik Johnson.
Survivor of the 1985 Lake Tahoe Mystery Illness, and foolishly volunteered to be a prototype for the most controversial syndrome in medical history
Lots of good points here, which I can’t analyze and comment on right now. The government budget is going to cut a lot of federally funded human service programs and that is the way the wind is blowing. CFS is a convenient target maddeningly.
I think we all have to strategize and think of more direct action with senp otoators and congresspeople, but this is how it is right now.
I’m worried about Medicare and Social Security on top of other programs. The GOP still wants to overturn the Affordable Care Act. Many want to gut Medicare.
So, of course, CFS is on the chopping block.
We have to figure out what to do. Jen Brea’s Twitter tells of a petition campaign abroad carried out by advocates, friends, relatives of people with CFS.
On a related note, if I hear of more stories about advanced Lyme disease not existing, I’ll scream. A friend died of advanced Lyme disease last November, along with two other tick-born parasitic infections. She had been very sick for years, got to the point where she couldn’t type on her keyboard and she was a writer. It was sad. She was only 65.
Hopefully there will be some indication about the CDC funding and other government issues at the CFSAC meeting starting tomorrow.
In the for what it’s worth file, I was the first person in the room at the first public meeting of the original Chronic Fatigue Syndrome Interagency Coordinating Committee in 1993. Another man was there early and sat down at the conference table with a big stack of papers and put his hands beside the papers. Within seconds his hands were shaking so badly that he quickly stuck them under the table. It was a little suspicious, but he sure sounded good in his presentation. It turned out to be the CDC’s Brian Mahy who was later transferred for the infamous misallocation of CFS funds.
Also that year we finally got some provisions passed in the NIH reauthorization bill. In that case it was a Senate staffer who surreptitiously almost successfully blocked everything. But that’s a longer story.
I look forward to experienced observers reports on the upcoming meeting.
Wow! Reading this thread is like reading a mold issue thread. People are so injured, so wanting to be heard, and they have personal perspectives on various aspects of the subject that they desperately want understood.
While the concerns are legitimate, the need to be understood sometimes makes it very difficult as a group to stay focused on aspects of what needs to be done to change public health policy for the good of all.
As I understand it and to get back to the important point, the question of the table is:
Is the ME/CFS community going to cohesively push for the U.S. Senate Appropriations Committee to fund CDC research of ME/CFS?
Yes. There are several petition/email efforts underway, as well as outreach to members of the Senate committee.
Jennie,
This is my two cents of how I’d do it. Just a suggestion of a good way to keep ME/CFS on legislative research funders’ and public health policy setters’ radar.
You all have an opportunity right now to motivate the community into a cohesive voice via outrage that the ME/CFS funding was cut after the NIH report of what devastation it is causing. Strike while the iron is hot!
1. I’d find out as much as I could of who promoted that the funding should be cut, and why they did it.
2. Then I’d compose a no more than 2 page, double spaced letter to the Senate Appropriations Committee requesting funding for the following year – while stating the outrage of the funding being cut this year and quoting from the NIH report about the billions of dollars being wasted while lives are ruined. The letter has to be PERFECT, so send it out for a small grout to “peer review” the final draft.
Here’s a good quote from the NIH report:
“Both society and the medical profession have contributed to ME/CFS [Chronic Fatigue] patients feeling disrespected and rejected. They are often treated with skepticism, uncertainty, and apprehension and labeled as deconditioned or having a primary psychological disorder. ME/CFS patients often make extraordinary efforts at extreme personal and physical costs to find a physician who will correctly diagnose and treat their symptoms while others are treated inappropriately causing additional harm. Overall, the debilitating effects of ME/CFS can result in financial instability due to the consequences of the illness (e.g., the loss of employment, home)”….economic burden estimated to be between $2 billion and $7 billion in the United States. ME/CFS results in major disability for a large proportion of the people affected.”
3. A sad statement, the more initial signers you can get who have letters behind their names or who run organizations; the more valuable the letter and the greater potential of getting a large number of signers from all walks of life.
4. Sometimes, the influential names won’t sign if they think no one else has committed. Inform them that you will get no less than 25 reputable signers or the letter will not even be sent or the fact that they signed it, disclosed. (doctors who are under attack get nervous at the possibility that their name and someone they think is a quack/crank will be the only two signers).
5. After you have 25 influential signers, convert it to petition form and send it out to the masses for signature.
6. After you have as many signers as you believe possible; convert it back into letter form with all the signers’ names attached, send it to the Senate Appropriations Committee, and try to get some mainstream media attention on it. (2016 is an election year. Use that to your advantage).
7. Recognize that there are short-sighted thinkers who won’t sign it because it does not include their personal agenda, or they don’t think funding the CDC will help, or they don’t like so-in-so who already signed it, or you didn’t put a period on the end of the 2nd sentence of the 3rd paragraph on page 2, etc. They will become your biggest obstacle to staying on legislative/NGO radar by lobbying/advising others not to sign — while using your efforts as a platform to preach their personal agenda to the ME/CFS community. Its VERY important to nip these people in the bud by politely telling them to “Sit down and shut the ___ up for the good of all.”
8. Eblast/post the petition no less than 3 times within about a 2 week period. The study of marketing indicates that people have to be told something 3 times before they will believe it and/or act.
9. You may not get the funding/changes you request even with a great request letter, lots of signers and media attention. But you’ll stay on the radar of gov’t and NGO public health policy setters and as a result, change sometimes comes in mysterious ways. If you do nothing to aid policy-setters to understand their needed roles, then you are guaranteed no resultant change coming from policy-setters.
Example: WorkCompCentral 2010 “Group Petitions ACOEM for Review of Mold Guidelines” https://katysexposure.wordpress.com/2010/12/09/workcompcentral-scientists-physicians-attorneys-citizens-lodge-concern-regarding-acoem-2010-mold-statement-revisions-being-a-continued-aid-for-workers-comp-insurer-fraud-over-mold-issue-requ/
WorkCompCentral 2015 “ACOEM Takes Down Position Paper commonly Used to Defend against Mold Claims” https://katysexposure.wordpress.com/2015/03/18/acoem-takes-down-position-paper-commonly-used-to-defend-against-mold-claims/
Just my two cents. Hope it helps.
I’m not involved in the effort to restore the CDC funding request. See my previous blog post as to why. I’m also not actively opposing those who are conducting these actions, so I hope your #7 is not directing me to sit down and shut up. Most of what you lay out here is in process.
Jennie, no. Of course I am not saying that to you. You obviously are a balanced person in this issue — who may not support every effort made but also does not disparage others’ efforts — whether you support them or not. Good to hear that such efforts are underway. Petitions don’t work like people think they do, i.e. a “yes” or “no” immediate answer. But ultimately, good ones do help.
The “Sit down and shut up” comment was apparently intended for me.
An interesting proposition, for this would be silencing a prototype for CFS who represents the original evidence base as he was asked to do at the inception of this syndrome, and who has been asked to present this very same evidence at a sizeable conference of physicians in Phoenix this coming November.
Why don’t we agree that Sharon was not targeting anyone in particular with the comment. Let’s move on.
Your petitions have absolutely no more potential to be effective today, than the perfectly eloquent ones of 25 years ago.
The reason hasn’t changed.
As deputy director of the FDA, Admiral Sandra Kweder tried so hard to explain to you during the ampligen hearings, until you agree on a discrete entity for target-validation, the minimum requirements to start the process for study have not been met.
Ironically, the CDC/NIH are perfectly aware of the divisions in the patient community, and are relying upon the mob mentality to maintain the status quo.
Until the prevailing majority of patients agree on a discrete set of parameters for study, this is where you will remain.
The CDC/NIH knows this will not happen. That is why they keep tossing the ball back in your court.
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“The failure to agree on a firm diagnostic criteria has distorted the data base for epidemiological and other research, thus denying recognition of the unique epidemiological pattern of myalgic encephalomyelitis.”
-Dr A Melvin Ramsay
Jennie. Thank you. I wasn’t targeting anyone. The difficult problem of trying to present a cohesive front when lobbying legislators and relevant NGOs, is not unique to ME/CFS or to the mold issue.
Its a problem that occurs across the board in environmental advocacy – and its origin is just human nature. It will blindside you, if you don’t know how to stop it before it gets out of the gate.
Sometimes its not the naysayers which create the problems. Sometimes its those wanting to be heard, not understanding that sometimes their efforts make it harder for a cohesive voice to be heard where it counts. So no, I wasn’t targeting anyone specifically.
A good TED Talk on the subject of what happens when protecting perceived interests of a community unintentionally boomerang to cause harm to the community — and how hard it is to undo it, once the damage is done: http://www.ted.com/talks/margaret_heffernan_the_dangers_of_willful_blindness?language=en
From the inception of CFS right up until 2009, Dr. Peterson always maintained that there was a core “evidence base” to the syndrome.
That regardless of what variations might exist, there was a discrete entity that he was looking at.
This “essence” consisted of the evidence he and Dr. Cheney used as leverage to induce the CDC to create this syndrome back in 1987.
There was sufficient concurrency in the Tahoe disease to view it as probably being the same illness.
Then the XMRV debacle happened.
The CFS community took up XMRV as “the cause” and threw Dr. Peterson off the cliff.
The patient population made their attitude toward him and his “Classic CFS” clear, just as you are doing the same right here and now, to a member of his outbreak, and prototype for the syndrome.
“That doesn’t matter anymore and it is ARROGANT of you to make it ALL ABOUT YOURSELF”
The message is clear. They have taken over control and the past doesn’t matter.
Ever since then, Dr Peterson has backed down on CFS being his entity.
The CFS community won. They beat him into submission.
For better or for worse, this “CFS has moved on” philosophy has set up an irreconcilable contradiction.
All “Moved-on-CFS” proponents represent a CFS that is different than his, and have proven they are willing to battle his CFS right out of existence to make way for their own version.
When the CFS community dumped Dr. Peterson’s “CFS”, the syndrome fell below the minimum qualifications to even exist in a ‘syndrome descriptive form”
There was only disagreement.
Perhaps this is why they are dropping funding for CFS.
Erik, no one has thrown Dr. Peterson off a cliff. In fact, much of the vocal support for the CDC multisite study has also been supportive of Dr. Peterson.
You have made your points about the history of this disease, or diseases, as well as the political history. I say again, we are far afield from the original topic of my blog post.
Let’s move back on topic. I will not ask again.
I repeat.
This is very much ON topic.
For the issue of whether CFS is a vague and amorphous “subset” of some “umbrella” or whether it was “a typical outbreak of ME” determines the standard of evidence for which you are requesting funding.
Erik, please comply with my blog policies if you wish to continue commenting here.
If the study is set up in such a way that you can tell the differences between the place where the samples were collected – and I have been assured that it is – then the FIRST step is showing that Dr. Peterson’s patients are different from, say, Dr. Lapp’s – and certainly different from the Atlanta/Georgia data set. That’s very important, and in this case, it doesn’t matter nearly as much what it’s called as what the data show. [I remain skeptical that CDC will allow a study to show how different the Atlanta/Georgia data set is, but I am told that is a main purpose of the study, so – until it becomes clear otherwise – I have to hope it will indeed do what it is supposed to do.]
Here’s an update on the CDC funding situation. The short answer, given by the staffer in the Senate who oversees the CDC budget: No lobbyist for ME/CFS (or just ME) contacted him this February when the budget process began. He heard from 100 other disease groups, though. And so, when looking to make cuts, a small program with no lobbying presence was a natural target.
http://www.meaction.net/2015/08/30/cdc-funding-update-the-importance-of-lobbying/#comment-344
Oops, that previous URL takes you to a comment. Here’s the top of that page:
http://www.meaction.net/2015/08/30/cdc-funding-update-the-importance-of-lobbying/