The third IOM meeting of the committee tasked with the development of a new case definition for ME/CFS will be held on May 5th and 6th, 2014.
According to the IOM’s listserv message from yesterday, “[on the afternoon of May 5, the committee will hold an information-gathering session that will be open to the public. Interested individuals will be able to attend the open session in person at the National Academies of Science building or virtually via webcast.” [emphasis added] Written comments may be submitted prior to the meeting. If they are submitted by April 23, 2014, the “will be distributed to the committee before the meeting.”
“Open” Meeting
Before people get too excited about the fact that parts of the meeting are open to the public, let’s be clear that the IOM’s understanding of what constitutes a public meting is peculiar at best. There will be no opportunity for the public to participate in the meeting, other than for a few pre-selected, invited speakers. They can hardly be considered “the public.” The public is only welcome to attend the meeting in person (up to a very limited number of people) and via webcast, but there won’t be an open mic for comments or questions and dissenting opinions by the public will definitely not be allowed.
One has to wonder why the IOM deviated from its January 27, 2014 meeting format. The afternoon session of that meeting was also open to the public. But the big difference there was that 15 uninvited speakers were allowed to make comments of 3 minutes each. Could the IOM really not find 45 minutes in its schedule to allow for true public participation? Or was it so threatened by the fact that most speakers expressed their strong opposition to the “study” and the whole IOM process in January that it had to shut that down this time? Is the oh-so powerful and, as we keep hearing, prestigious IOM really that afraid of hearing what patients have to say? Limiting public input to a select few and relegating everybody else to quiet listeners is just another indicator for the disdain that the process has for patients. The IOM is not even trying to give the appearance that it genuinely cares about patients’ opinions. But, then again, we already knew that. The body language of the panel members at the January meeting spoke volumes.
And the possibility to submit written comments is nothing but a red herring. Written comments can be submitted to the committee at any point in time. They will become part of the public record no matter when submitted. Allegedly, if submitted by the deadline, the committee members will read them before the meeting. That may or may not actually happen. But it doesn’t even matter because the real question is whether those comments will carry any weight; more on that below. Spoiler alert: NOT.
So, creating an “open” comment session is the IOM’s way of merely going through the motions. It’s a big charade. But it sure looks good and it’s clearly a great PR move on the part of the IOM.
Comments
The “open” IOM session will address the following questions:
1) In your opinion, what are the most important issues that healthcare providers should be educated about when it comes to diagnosis of ME/CFS?
2) What are your thoughts on the current terminology used to describe this disease: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome? If you could suggest new terminology, what would you suggest and why?
There has been some chatter on the Internet among patients about whether they should indeed submit comments. People have said that they feel like they are between a rock and a hard place. If they submit comments, their participation could be interpreted as cooperation with the IOM despite many, if not most, patients opposing the IOM “study.” At the same time, patients are concerned about missing an opportunity to educate the panel.
As I have said before, this is a very personal decision and, at the end of the day, we all have to live with our choices. Having said that, it is my strong conviction that cooperating with the IOM by providing substantive comments will do nothing but lend legitimacy to a flawed process that has the very real risk and is, in fact, designed by HHS, to harm this patient population greatly. Why else would the committee be stacked with a majority of non-experts? These non-experts have no business defining a disease that they have no prior experience with.
I truly mean no disrespect to these non-expert panel members. I am sure they are all accomplished in their area of expertise. I am not questioning that, but they are not experts in THIS disease. The Gulf War Illness committee members probably had similarly impressive credentials and good intentions, but we’ve seen the disastrous results of their efforts. The foremost experts for this disease have stated that this effort will harm patients. And yet, here these non-experts are, not having treated a single patient with this disease or researched the disease in any meaningful way or in any way at all. This is not a purely intellectual exercise. It has taken the experts decades to accumulate their expertise by treating and researching this disease and the non-experts are not going to become experts capable of producing an accurate definition by reading about this extremely complex and very unique disease for a bit more than a year in their spare time. What they have been asked to do is simply not feasible to do competently no matter how much they might want to believe it is or how good their intentions or credentials are.
But back to the comments. There is a snowball’s chance in hell that patients’ comments will have the slightest impact. First of all, how did that work out for us when some members of our community provided input on the provisional panel members and their potential conflicts of interest? In short, it didn’t.
Potential conflict-of-interest issues of panel members were supposed to be discussed during the first meeting, on January 27, 2014. That sure did not occur during the open afternoon session. Maybe there was a closed morning session that day. We don’t know because of the secrecy surrounding this “study.” And if that vetting indeed took place in the morning of January 27, 2014, did we hear about how the panel overcame the concerns some patients raised about some committee members? No. All that was achieved by raising conflict-of-interest issues with the IOM was that the IOM and HHS now are able to claim that patients had a say in the make-up of the committee when it fact we did not. We were duped, as many patients predicted. Not a single panel member was replaced as a result of patients’ concerns. The facts speak for themselves.
Providing comments now will be as effective, as in not effective at all. It serves no other purpose than to legitimize a grossly flawed process. It will allow HHS to claim that the IOM “study” had patient buy-in although the vast majority of patients continue to oppose this “study.”
You still don’t believe me? Ok, let me try to convince you some more. It is true that the Statement of Work provides for patient input. However, the clear task spelled out in the Statement of Work is an evidence-based review of the literature. By definition, that rules out taking into account anecdotal patient stories or comments. The Statement of Work, in effect, prohibits giving weight to patient input because that would be outside the scope of the evidence-based review. Clever, isn’t it?
Also, are patient comments reflected in the Gulf War Illness IOM reports? Remember, the best predictor for future behavior is past behavior.
Providing written comments or, if invited, giving comments at the meeting will not make a single difference in the outcome of the “study.” All it will accomplish is for HHS to be able to claim that patients were given a voice and were on board with this farce when most patients familiar with the issue are not.
I know it’s unsettling to feel helpless and to have no control. But submitting comments is not the way to gain any control. The only thing we can control is not to legitimize this “study” by refusing to participate and by continuing our protest.
Therefore, I will not send in substantive comments. I will, however, send a note repeating my strong and unconditional opposition to the “study” and the process. I urge others to resist the temptation to cooperate by answering the questions posed by the IOM. If you do send comments expressing your opposition (if you, in fact, do oppose), I caution against falling into the trap of adding on, “Should the worst happen and this study continue, then I would like the committee to consider the following.” That is still participating substantively. Remember that HHS does not have good intentions as evidenced quite obviously in many ways.
CFSAC patient representative, Eileen Holderman, who clearly understands the danger of cooperating with the IOM declined to speak at the May IOM meeting in her message to the IOM: “For numerous reasons stated below, I must decline your speaking invitation. I am part of a vast patient advocacy movement that opposes the HHS/IOM Contract to redefine Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). There are many reasons for my (and other advocates’) opposition …” I encourage everybody to read Ms. Holderman’s entire message to the IOM. It’s powerful and inspirational. It explains the reasons for patients’ and advocates’ opposition to the IOM “study” clearly and convincingly.
Latest GWI Report and New GWI Legislation
Remember that, earlier this month, the IOM was unable to come up with a new case definition for Gulf War Illness: a big $850,000 oops. When it comes to dealing with complex diseases and particularly case definitions, the IOM’s lack of expertise is clearly and painfully exposed. The ME/CFS IOM committee is not more qualified to define our disease than the GWI committee was to define GWI.
Recently, new legislation, the Gulf War Health Research Reform Act of 2014, was introduced. The new legislation proposes “not [to] disseminate or use for research, clinical care, benefits, or any other purpose the results of the report of the Institute of Medicine titled Gulf War and Health Report: Volume 9. Treatment for Chronic Multisymptom Illness.”
All of a sudden the IOM is not that prestigious and respected anymore, is it? I believe that there is a real risk to the reputation of the IOM in the long run if it continues to accept tasks that are clearly outside the scope of its expertise. Although I see the clear dilemma for the IOM here. Most of its work is commissioned by the federal government. The IOM is in a precarious position. If it does not deliver the results ordered by the government, it could lose its biggest source of income.
One can only speculate how the careers of those who serve(d) on IOM panels delivering sub-standard reports will be affected. But I do believe in holding people accountable for their actions, especially when these actions affect hundreds of thousands, if not a million, of sick patients and their families.
Of additional interest is that the Gulf War Health Care Reform Act also requires that any future IOM studies of GWI convene committees consisting of only medical professionals who are experienced in treating GWI patients, an obvious common-sense requirement that is blatantly being cast aside in the case of the ME/CFS IOM “study” as it has been in the GWI IOM “studies.” Should any further GWI studies be contracted for with the Institute of Medicine, the Act would also require (1) obtaining the advice of the Research Advisory Committee on Gulf War Veterans’ Illnesses, a FACA committee, regarding the scope of work and the charge and (2) including not less than three members of the Research Advisory Committee on Gulf War Veterans’ Illnesses.
IACFS/ME Conference in San Francisco
It has been reported that two staff members of the IOM assigned to the IOM study attended last week’s IACFS/ME conference in San Francisco. One would have to assume that the associated expenses were covered under the HHS/IOM contract. It is not immediately apparent why IOM staff members who, as such, are not members of the IOM committee would benefit from learning about the science of ME/CFS. But more importantly, did any of the non-experts on the committee attend the conference? They probably could have learned more about ME/CFS by doing so than by reading the literature of only replicated studies for a few months.
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It’s becoming clearer every day that the IOM needs to be reined and that its dangerously absolute, yet unwarranted, power needs to be limited.
Thoughts About M.E. 
Reblogged this on Short Blogs for the Distracted……… and commented:
I used to think debate was a good thing… I’ve changed my thinking.. It’s futile ..
Very true–debate IS futile in this set-up of the IOM committee VS. the ME/CFS patients–because it is NOT genuine debate–it is a RIGGED and scripted game of power and politics within the HHS, CDC, NIH, et al and branching out and permeating to the IOM contract to define/redefine ME/CFS.
Ohhh, yessss, and with a little spin on ‘invitations’ and words here and there to make it look politically correct on the outside–however, the IoM contract to define/redefine ME/CFS is a destructive FARCE and a harmful sham.
Unless (our) response is substantive to their direct questions, and fits within their parameters, our comments do NOT go to the members of the IoM committee and are NOT part of the public record. This happened first time around for the January 27, 2014 IoM meeting.
Exactly so, Jeannette, this is a trolling expedition to gain ‘substantive’ info that can be used to spin and say–see–we did get input from the ME/CFS community–here’s the proof/evidence that we are doing a good job and including the ME/CFS community. AND where is the proof of the many comments sent in disagreeing with the IoM contract? NOT visible; hidden away . . .
Reality check for us–hook, line, sinker–and SUNK! Gotcha! Duped, used, abused and played for fools by the powers that be, in taking advantage of the goodness in human nature of a very physiologically ill patient population, to use that ‘substantive’ information as ‘evidence’ against us and OVER RULE and sentence by ‘JURY’ (‘their words’) to the continuation of a very ill hellish non-life imprisoned within the debilitating biological illness of ME/CFS–for more years and decades to come. Eyes WIDE open . . .
You see, people/positions that perform and rule with these ‘destructive patterns’ are EXPERT at their GAME–holding all this wielding ‘power’ and know full well WHO to, HOW to and WHEN to PLAY the players–they look for this–then move in to pick candidates and favourites to ‘appeal to,’ manipulate, gain information and use that to ‘their targeted advantage.’ AND, ‘all of this’ is unfortunately to the detriment of the overall ME/CFS patient population.
I fully agree, Jeanette, that the HHS does not have good intentions; this is completely evident and evidenced. HHS has UPPED their game on this one–ramming in the IoM contract/P2P jury AGAINST the opposition of the wisdom, vast knowledge, experience and expertise of the ME/CFS Experts and Researchers, patients and advocates.
Thank you to all working with us and helping us to continue to send our strong message to shut down the HHS IoM contract and adopt the CCC.
” The IOM is in a precarious position. If it does not deliver the results ordered by the government, it could lose its biggest source of income.” If this is not a conflict of interest, what is?
Blatant!
I agree totally. Asking for feedback is part of their procedure, not to hear what the
comments are, just as long as there are comments to fulfill their requirements.
They think we don’t know that, they think that “surprising” us with another public comment day, that they originally had no intention of doing, like they were giving us a present, that we would jump at the opportunity.
The people on that panel who are not experts in the field are systematic reviewers that have written articles according to what their evidence base says which is incorrect and also biased as we all saw when we looked at those articles. So according to them, since their colleagues wrote much of that evidence, it must be correct because Dr.’s Joe and Jane author wrote it.
So even if we gave our opinions to their questions, would it really matter to them?
These reviewers have to “say” what the evidence base says, not what the actual live patients say. The new Gulf War report that just came out says they basically could not define Gulf War illness, and why was that? They either repeat the 1st result, which was from the “evidence” base, or say it could not be done and that it should be done only by Gulf War experts, which is their easy way out of it, because these people do not step out of the IOM evidence base box.
Also, since one of the founders of systematic reviews happens to be on that panel,
there is no way they are going to go “against” what “their” evidence base says,
she is there to make sure of that. HHS happens to know her well, all the more reason why she is on the panel.
So its really not about patients, its not about patients at all. Its about HHS having the “prestigious” IOM come up with their own version of a definition, and because its the “IOM” it must be valid because the “IOM” is the “center of excellence.
These reviewers also have no fear of any legal ramifications,because they are using the available evidence base, their legal loophole because the evidence base “must be correct.”
What does that tell everyone? It tells everyone that the IOM elected members that are
on these panels are “company people.” “Company people” say what they are expected to
say by the company, which is the IOM in this case. HHS knows that as well as knowing whats on the evidence base already.
So, like I said above, would it really matter what we said anyway?
It hasn’t mattered for 30 years!
Thank you Jeannette and Eileen Holderman. I wholeheartedly agree.
Dear Jeannette, I recently heard that the ICD-10 will be in use by Oct. 2014 and wonder if this sudden push for a definition would be driven by the new ICD codes. I wish our CFSAC or the ICFSAC had presented a definition much earlier but to my knowledge they did not. Of course, much information has just come forth recently. As well, when I read the IOM’s Gulf War summary, they left the definition “wide open” such that many could still fall under it and receive medical and health insurance benefits. So, instead of “closing” the definition, they effectively broadened it to the benefit of our vets and admitted that no one has found a causal relationship between GWS and any of the previous theories such as vaccines, Dr. Garth Nicholson’s work with mycoplasm and other anaerobes, and others. As a further example, MS has no known cause yet operates under a very heterogeneous definition with the many forms included such as will likely be the case with ME/CFS. I tend to think this has more to do with simple Federal bureaucracy, Obama trying to tighten the health cost belt, and the new ICD-10 upcoming. But, this is all based on my person opinion. Conjecture. I suppose we shall see. By the way, when patients speak, they do not speak of the need for a definition either at CFSAC meetings. They simply review their and the group’s debilitating symptoms and admonish the HHS for not producing more research monies. Me? I’m for pushing that my diagnosis is finally taught in our medical universities. And that a specialty is designated so that we can get on with it in whatever form or fashion as our knowledge evolves as well as treatments. The PCP’s don’t even know how to diagnose someone with CFS as they’ve never learned the symptomatology. Yes. It’s time for a definition, a protocol as docs are dependent on for practice, and the education of practicing MD’s and students to move our cause forward. Thanks for allowing me this comment. marcie myers
Good comments. It appears that the IOM’s public postering and call for a meeting “open to the public” in May has everything to do with the uproar and opposition to their committee’s make-up and assigned tasks. The IOM, as is true of the government in general, has to make it appear that they are including those who suffer with this disease. They have to make it appear “democratic” and “inclusive,” and show that they are listening and responsive to us.
This is all about appearances. It is about the public pressure that the IOM (and HHS) are under due to the huge hue and cry that went on around the IOM’s establishment, the committee’s make-up and its goals.
It’s like so many other scenarios involving the government. There’s public pressure. A meeting is held, people are heard voicing opposition, and then the schools are closed or whatever.
Then the whole thing can be pushed under the rug, and the IOM can do what it was going to do all along, with cues from HHS.
Yes, at this time the government is tightening the budget, is cutting back on a lot of essential programs, including medical research. And our disease is just not seen as important or causing terminal illnesses, although HIV/AIDS was not funded and researched, even though there were many deaths, until a movement went activist and public until it could not be ignored.
I wish we could all stand in front of the White House and have a press conference with microphones and press releases and get media attention.
Great points, Jeannette! Besides, these are the same old questions they asked us before about the P2P. Did they read our responses? Ha! I do have a question about the IACFS/ME meeting. I’ve been trying to get reports from that meeting & the only thing I’ve found is info on Komaroff. No results of Friedberg’s study or much of anything else. Do you know of any way to access what went on? I read an advocate’s blog, but they just talked about Komaroff. I noticed Klimas was there, and she’s on the IOM panel. Would just like to know what’s going on. Thanks for all you do!
Good point about repeating the same questions. And no, they don’t listen. That’s why this whole thing is so ridiculous.
Re the conference, I think there are some great summaries on Phoenix Rising. Don’t have links right now. But should be easy to find.
Thanks Jeannete! I’ll check it out! ♥
Is there a way we can do a sustained email campaign through all CFS list-serves, to individuals, directed to the heads of HHS, CDC, NIH and the White House, as well as to our senators and congresspeople? Can anyone set this up? A email petition blitz would help. It doesn’t have to be detailed with all of the mistakes and misinformation by the government agencies.
It could be simple:
Sign on to help get funding and research for Chronic Fatigue Syndrome, a disease that affects at least $1 million people in the U.S.
Right now, an HHS-appointed committee, the IOM is discussing the “symptoms” and “diagnostic criteria” for this disease, when there is an already used valid set of criteria and symptoms.
This disease renders hundreds of thousands of U.S. residents (and 17 million worldwide) homebound and unable to work, travel, take care of their families — and more.
The cause of this disease and treatment must be found — and quickly, so that its
sufferers can live productive lives. This requires adequate government funding and
prioritizing.
We ask everyone to sign this petition asking that the funding for the IOM instead be
used for funding research for the causes and treatment of Chronic Fatigue Syndrome,
and that the federal budget be expanded so that monies allocated are adequate to
fight this horrendous disease.
This is just a draft. Can we do this?