In the last two weeks, position statements on the IOM and ME/CFS case definitions have been outnumbered only by rumors and allegations. I’ve had trouble keeping up and I am immersed in this issue. I can’t imagine how challenging it is for patients and advocates to keep track of it all without a scorecard. Fortunately, I think we can boil the statements down to their essentials, and perhaps find the potential for meaningful consensus.
The Statements
Let’s examine the statements in chronological order beginning with September 23rd and the announcement of the HHS contract with the IOM. I include links to the original documents so you can read them for yourself. My summary is my personal understanding and interpretation of the documents. If I’ve gotten anything wrong in my summary, I welcome correction from the statements’ authors.
First up we have the Experts’ Letter to Secretary Sebelius. Released on September 23rd, just hours after the HHS announcement, this letter is unprecedented in ME/CFS advocacy. The bottom line of the letter is 1) immediately adopt the Canadian Consensus Criteria for both clinical care and research; 2) continue to refine and update the CCC as needed; and 3) abandon the IOM effort because they lack the expertise.
Second, PANDORA Org issued a Position Statement on ME/CFS Criteria on September 26th. This seven page document covers more than just the IOM contract, and lays out PANDORA’s thinking on the case definition problem more broadly. For purposes of this post, the bottom line is: 1) the CCC is better than the Fukuda or Oxford definitions, but it’s not sufficient as is; 2) the IOM and the CFSAC do not have sufficient expertise to create a new definition; and 3) PANDORA is ready to help the true experts hold a workshop to create a definition.
Third, Dr. Lily Chu (who did not sign the Experts’ Letter) issued her own letter on September 28th and joined that effort. Dr. Chu is a member of the Board of the IACFS/ME, although this letter is her own position and not the official position of that organization. The bottom line of her letter is: 1) cancel the IOM contract; 2) the CCC needs refinement but is good enough to start using now; and 3) create definitions for clinical care and research through one process use a single definition for clinical care and research. (Lily sent me this clarification, so I’ve updated accordingly)
Fourth, Dr. Bateman published a statement explaining why she was no longer supporting the Experts’ Letter on September 30th. Her statement came after a flurry of rumors that the Association had asked the thirty-five expert signatories to change their position (the Association denies this). The bottom line is: 1) the CCC is the best we have but it is not good enough and needs to be updated; 2) the IOM contract could lead to increased validation and federal funding; and 3) we should actively call for experts on the IOM panel and regroup if the panel falls short.
Fifth, the CFIDS Association issued a statement on October 2nd. The statement includes several paragraphs of background and links to primary documents such as the IOM Statement of Work and the Association’s email to the signatories. The bottom line of the Association’s statement is: 1) the CCC should be optimized for clinical use; 2) the IOM panel should have the best experts and that patients should have a strong voice; and 3) the Association promises strong opposition if the IOM falls short. In a follow-up statement from October 8th, the Association said it believes a positive working relationship with HHS and IOM is necessary in order to secure cooperation for increased funding and other meaningful progress.
Sixth, many advocates continue in their efforts to stop the IOM contract through a variety of means including petitions, letter writing campaigns, and more. I could fill a whole post with links to blog posts and sample letters and forums threads. The bottom line is 1) cancel the IOM contract and 2) immediately adopt CCC.
Seventh, I have to point out that there are other organizations and individuals who have not made public statements. The IACFS/ME has not issued a statement, although several of the members have made their positions clear. A number of prominent researchers and clinicians have not spoken publicly about this either, including Dr. Komaroff, Dr. Rowe, Dr. Kogelnik, Dr. Friedberg, and many of the voting members of the CFS Advisory Committee. I don’t think we can draw any firm conclusions from their silence.
Convergence
What do all these statements have in common?
- The Fukuda definition is dead. Not a single statement – including the IOM Statement of Work – says that Fukuda is a reasonable definition. While no one is singing over its grave, everyone has tacitly acknowledged that it is time to move on and do better. This is huge!
- The CCC is the place to start. Everyone agrees that CCC should be the starting point for a clinical case definition. The Experts’ Letter, Chu’s letter, and many advocates acknowledge that CCC needs refinement, but advocate for its immediate adoption. PANDORA, Bateman and the CFIDS Association all want to refine and operationalize it prior to adopting it in practice.
- The case definition must be written by ME/CFS experts. The HHS Statement of Work does not define “expert” nor does it require a certain number or percentage of them on the IOM panel. However, all of the position statements I’ve reviewed make it clear that the definition must be written by experts, whether on the IOM or another mechanism. Bateman and the CFIDS Association seem optimistic that the IOM panel will have sufficient ME/CFS expertise. PANDORA is the only organization to attempt to define the degree of knowledge that makes an ME/CFS expert. The Experts’ Letter, Chu’s letter, and many advocates do not believe the IOM will appoint sufficient experts to the panel, and support the Experts’ Letter as the solution.
Some advocates, including me, have focused on the strong disagreement between organizations and individuals about the IOM contract. Because there is so much at stake, we all quickly moved into opposing camps based on whether we think the CCC should be adopted as is and whether the IOM will appoint the right experts to its panel. These disagreements remain, but going forward I think focusing on them could be a mistake that will hinder our effectiveness.
Despite our deep divisions over whether the IOM will do right by ME/CFS, I see an opportunity for agreement and mutual reinforcement. We all want a case definition, written and agreed upon by the ME/CFS experts, that accurately describes our disease. We want a definition that operationalizes and improves upon the CCC, rather than starting from scratch. I believe that this may be within our reach. We do not all need to take identical positions or use the same methods to advocate. But we do need to communicate, coordinate, and push common positions forward.
The best analogy I can think of is a canoe. I’ve only been in a canoe a handful of times, but I learned very quickly what happens when you only paddle one side of the canoe: you turn in circles. If you want to move the canoe forward, then you must paddle on both sides. Even better, have a partner sharing your canoe paddle on one side while you paddle on the other. The better you coordinate the paddles, the faster you go.
Our opponents would love nothing better than to see us turning in circles, squabbling over whose turn it is to hold the paddle. I’m not saying we need to join hands and sing Kumbaya. There are things that I disagree with in every statement that I summarized above. This is not about getting my way. This is about results. None of us have a monopoly on the right answer. In fact, I believe that the right answer is more likely to emerge if we pull together. I’m not saying there is no room for dissent. Disagreement is a key part of finding the right answer. I am saying that we are all in the same canoe (even though we wish we weren’t), and we need to start paddling together.
Thank you for taking the time to lay this out clearly by time-line as all of ‘this’ unfolded, Jennie 🙂
Fair review, Jennie. But there is the problem of what the IoM did to Gulf War Illness. My years of paying attention to advocacy have shown that HHS is not helping us, rather they are pushing the psychiatric model, or “bio-social”. We just want the bio part, leave the “social” part for us to deal with, for that we can do on our own.
We also need a way to kill off the Oxford Definition & the Reeves definition. Having so many varied definitions is detrimental to finding a cause, and or a possible treatment. Doctors need to find study participants who have as many symptoms/test results that are similar, otherwise they will find nothing of use. It’s standard practice & how they cracked AIDS. HHS has had a 30 year record of pushing what is currently called “biosocial”, a more placating term than those used in the past like “hysteria”. But the treatment they recommend is the same. Bottom line, my canoe is not headed the way of those who think the IoM can be reasoned with. There has been no epiphany.
In the best of all possible worlds, I’d like to see something like the following from IOM: We are an organization that is committed to providing scientifically useful information. Although we have done many things, creating a case definition for Gulf War Illness was our first attempt at that type of task. Since we have now been contracted for a second case definition project, we have reviewed the process used in defining Gulf War Illness thus far and realize that there have been some shortcomings. We will be refining our process in the following ways:…. In that best of all possible worlds, those ways would include greater stakeholder involvement, and greater involvement of true experts in the field, meaning those who are actively treating and researching ME/CFS.
By behaving as true scientists, examining their own process in their first attempt at a task, and then refining their process for their second attempt — particularly in the matter of including a number of truly experienced experts — the IOM could increase their credibility and respect in the patient community as well as on the national level. After all, a true scientist is someone who can look at their own experiments, see what worked and what didn’t, and use that information to come up with a better process the next time. There is no loss of face in that. Actually, it’s the honorable and expected thing to do.
What you’ve left out that is of importance to me is that the IOM project would be allowed 18 months, once it got started, to come up with criteria that is already in existence and wouldn’t cost that $1million, which is sorely needed in real research.
That the IOM should comprise “outside experts” is another red flag. There ARE no outside experts. And even if there were, why spend the time and waste another two years of my life with this needless project?
We have trusted HHS before and it has ALWAYS thrown us under the psychiatric bus. Why should we be so gullible as to expect this tiger to change its stripes now? I see this IOM contract as simply another way to postpone, delay and ignore the problem AND as a way to say “see, we’re spending research money on this illness” when they could, if they were interested in patient welfare, spend it on REAL research, such as that that Ian Lipkin cannot get funds to do.
It’s a callous waste of money and patients lives.
a) The best predictor of future behavior is past behavior. The IOM screwed over Gulf War Illness.
b) It will become very clear once we know who the “experts” on the panel are.
So, in summary, everyone opposes the IOM contract except the CAA, which does not nor ever has worked in the interests of patients, and its apologists.
I’d like to point out that the “experts” have not yet backed down in the face of the signed IOM contract. Why anyone thinks that the IOM is going to put together a better group than the 34 people who wrote in support of the CCC as the basis for going forward is beyond me.
The CAA and other “advocates” have continuously attempted to play “nice” with the Feds. Where has that gotten us? This IOM contract has come out of left field and seemingly done in a smoke filled room set up with the intention of a pre-determined outcome – most likely one mirroring the Chronic Multi-symptom Illness best treated with CBT.
One question that hasn’t been answered is aside from Dr. Bateman is what are the other 34 “experts” thinking. If they “hold the line” against the IOM contract, then that should be a pretty compelling cue to support them and follow their lead.
Few people would engage in a card game if they knew the dealer was playing from a stacked deck. For the life of me I can’t figure out why anybody thinks there will be a favorable outcome with a stacked IOM Committee.
I also wonder what the other 34 are thinking. I wish very much that more would come forward and tell us what they think.
I think that while the 35 signatories are an incredible group, there are others who could enhance a final case definition. For example, the absence of Dr. Peter Rowe is of concern to me, although I draw no conclusions positive or negative based on his absence. I also wonder if there are other experts, maybe those who have experience in autoimmunity or infectious disease. Wouldn’t Dr. Lipkin be an incredible addition to the group? And I assume that case definition is itself a science. Maybe Dr. Jason can recommend additional people with that expertise?
None of that undermines your fundamental point, though. This was done in secret – which was WRONG. And if they do indeed do to us what was done to Gulf War, we are in trouble, like I said weeks ago. Do we have the clout to stop the contract? Even if the other 34 spoke, would that be enough? That’s what I’m struggling with.
Jennie
This is the same procedure that the VA IOM advocacy groups attempted but where did that get them? Do you think based on their previous actions against significant opposition which included Congress, that their actions would be any different? This would mean that if they created a criteria bettter than the CCC or ICCC-ME, it would in affect overturn their ruling concerning the Gulf War Veterans from GWI to CMI.
Given the thirty year history of HHS, NIH, CDC, do you really believe this will happen and given the fact that Vernon and Friedman are on both panels. I believe it is naviety to believe otherwise.
They don’t have enough money to fund legitimate scientific research projects into ME/CFS as Lipkin has stated. They turned him down but gave $250,000 in grants each year to Friedman over 6-7 year period for patients to cope with this illness plus the money allocated to the IOM for this dog and pony show when all of our researchers/clinicians oppose this contract and who are the real experts and quite capable in defining this illness! Why this sudden push to use the IOM when the previous chairman stated this is highly unusual procedure especially coming on the heels of the recent VA IOM decision.
Once they go behind closed doors, all bets are off.
I agree that behind closed doors is wrong.
I am not clear on what you mean by saying Vernon and Friedman (I’m assuming you mean Friedberg) were on both panels. Neither of them served on the IOM panel that issued the dreadful report on Gulf War Illness changing it to CMI and recommending psychological treatments. Both of them are serving on the IOM panel that is currently considering diagnostic criteria for Gulf War Illness. To my knowledge, neither of them has been appointed to the IOM ME/CFS panel, and in my opinion, neither should be.
Thank you Jennie for this. Simplifying and putting things in to context is very important. I also take heed in your call for reason. There is one statement though that has been left. It is really more of a non-statement. It is the silence from HHS to the letter of the 35 clinicians and experts. I am really surprised that we all, regardless of where we stand regarding the IOM contract, are not outraged at the fact that HHS has so far ignored the letter of 35. Silence actually, is a reply by itself.
No matter what group we belong to or not, as patients we are all beholden to these dedicated clinicians and researchers who put their name/signature on the line for us. Are we okay with the fact that they have been dissed? Are we okay with the fact that the IOM is following through, at a great speed with seeking nominations for their panel regardless of the statement of 90% of the ME/CFS experts?
I believe that this should be our unified effort. We need to stand by our experts for standing up for us. We should ask the IOM to hold off until the time that HHS respectfully replies to the letter of 35. Why is there such a rush in all this? Who will benefit by speeding this through?
I am not ok with the fact that HHS has not responded to the expert letter (to my knowledge). Despite the shutdown and despite the rollout of the insurance marketplace, the expert letter deserves a timely reply. And I’m not ok with the lightning speed the IOM is taking. But given the reality – no reply from HHS and turbospeed from the IOM – what is the right course of action for us to take? I’m struggling with that, but I do know that we’ll be stronger if we can take the action together or in coordination with each other.
I have just re-read the letter from the experts stating”
“We are writing as biomedical researchers and clinicians with expertise in the disease of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) to inform you that we have reached a consensus on adopting the 2003 Canadian Consensus Criteria (CCC) as the case definition for this disease.”
This is a consensus of the top 35 experts in the field. Yet CAA and PANDORA are saying no, I don’t accept that as is. Why? But, they are ready to accept the consensus of a panel of 15 of unknown number of experts?
How is this logical?
I can’t speak for either organization. I am going to SPECULATE based on their statements that they felt the 35 expert letter was not enough to override the contract once signed, and that the IOM study as announced was not as bad as we all feared. That’s a guess, though.
I@Iquitos
I completely agree with you, Iquitos. I have a further fear. Whatever the IOM comes up with, especially if it is something that is completely against the experience and knowledge of ME/CFS patients and experts, the DHHS can wash their hands of us and consider themselves off the hook. They have after all consulted “outside experts,” “impartial people,” who reviewed “evidence-based literature.” It doesn’t matter that some “evidence-based literature” was based on completely wrong theories about this disease and/or used studies done which included patients who truly do not have ME or ME/CFS because of poor, poor definitions thrown about. It doesn’t matter that researchers who truly are ME or ME/CFS experts cannot get funding for their grant applications so that the experience they gained working with thousands of patients and their research proposals can become evidence-based, and real knowledge about our disease be advanced. We have been chasing this round-about logic for three decades now and it has gotten us nowhere. Instead of some of these medical professional keeping their heads buried and their backsides covered in their “evidence-based” rhetoric, why don’t they open their eyes to the reality millions of ME or ME/CFS patients around the world have been dealing with for years. There needs to be a paradigm shift here in how to think about and tackle these complex multi-system diseases that are spreading around the world and don’t quite fit into present day medical structures. Doesn’t anybody wonder why this is taking place? It must seem easier to keep your heads buried in your “evidence-based” rhetoric. As I said on another blog, DHHS, NIH, CDC are fiddling while Rome is burning. It is time to open eyes and minds for a fresh approach if we are ever going to tackle this problem.
Moreover,
Since you used the very effective allegory of paddling on a canoe, I will use a different allegory.
Imagine that you are working in one for the major law firms in the United States on their highest profile case. You and a group of the brightest lawyers in the firm have been working on building this case. You have lived a breathed this and know it inside out as well as the 12 other attorneys on the case. When you are finally confident that you, as a group have finalized the best case, you present it to the top partner in the firm. He takes a look at it and says, I am not ready to use this. I am going to give it to the three new lawyers on the staff to reformulate and I will use their work and their product to file the case.
How would you and your 11 coworkers feel and more importantly how much sense does this make?
Great analogy, Gabby, but you might not like my answer. This happened to me, albeit on a smaller scale. A senior partner asked me on a Thursday to write a motion and supporting brief for 9am Monday. I worked all weekend writing it and had it waiting for him on Monday. He called me to his office later and said, “If I actually wanted to file this motion, this isn’t too bad.” That sort of disregard of hard work or expertise happened all the time, especially if there were politics involved.
I think HHS needs to reply to the experts. But I wonder where those experts are, too. In the past almost three weeks, we haven’t heard from any of them except Cindy Bateman. Do they support advocates’ efforts to kill the study? Will any of them refuse to serve if asked?
@Jennie Spotila
Lipkin? Really? I have a better chance of winning the lottery – particularly hard since I haven’t bought a ticket in 20 years. It’s really hard for people to come together when we’re not just in different ballparks but in different solar systems.
Based on the Gulf War Panel and other such committees we’ve seen (CFSAC), there will be “divine” guidance (Nancy Lee and others) behind the scenes to guide members to the desired output (no agreement on the CCC, no removal of the CDC toolkit). There may even be a few who put get some nice points across (Holderman, Fletcher, Krapchick) but it is unlikely there will be many forceful members – certainly not in the majority. The bulk of these people will have lots of letters after their names, degrees from elite universities and sound really impressive. However, chances are the majority will have no idea what “CFS” is and frankly probably don’t give a damn because like most MDs and the public believe the CDC’s spin that this patient population has “false illness beliefs” and just need Cymbalta, CBT and maybe some electric shocks.
Do you mean you think there’s no chance of Lipkin getting on the panel? Or that you wouldn’t want him there?
I agree with your point, though, that if the panel only has a couple people who understand ME/CFS then a good result is unlikely.
You’ve seen this comment before, Jennie, but I want to restate it for your readers, many of whom seem to hold the same position I do, e.g., this IoM study is going to be a disaster for us.
Many ME/CFS organizations over the last 30 years tried to work with the various government agencies as best we could. Ever hopeful, we continue to be polite and agreeable and go along with whatever bad idea comes along, hoping that we can have some influence to change it. This hasn’t worked well. We have no funding for research, and there are people in positions of power and influence who clearly disrespect us (Nancy Lee, Howard Koh). We, as a community, and much because of the NAAME and FDA Team’s efforts over the past year, are now getting some collective backbone – look at the effect of mass pressure on the FDA to make this disease the first studied under PDUFA. However, even then, did we get what we wanted? No. We got what THEY wanted. Better than nothing, but no harm was done at least and some positive things resulted.
Will there be harm with the IoM study? Yes. Let me count the ways:
1. Huge waste of money that could be so much better given to our leading researchers for trials and studies that are ready to go.
2. Waste of time: 18 months to diddle around finding a definition; we already have one, and it costs nothing to adopt it – the CCC.
3. Risk of a worse name: hard to believe they could get something worse than CFS, but it could easily be called the same or similar name they gave to the GWI – that was so non-specific it could easily apply to us. Think it can’t happen? Think instead of the harm – the future decades of harm it could have on patients.
4. Risk of a bad definition: the risk here is immense. How can a group of non-ME/CFS experts (and it will be that) do better than those who created the CCC and ICC definitions? Can’t be done.
5. Risk that the current and future members of the medical profession who would be diagnosing and treating ME/CFS patients will have worse than the Toolkit to work with. A definition such as that for GWI is even worse than the Empirical.
I believe that those who think that the IoM study has some merit, or some likelihood of achieving what we want are dreaming, based on past experience. We won’t change the HHS plans or decisions. Their plans were made in secret and will continue to be made in secret, and it won’t include our wishes or choices. We will come out of this in 18 months and find we are in a place worse than in 1988.
Billie
I guess you are missing the point here. Based on the prior IOM panel decisionary process, the only way this panel will overrule their prior decision is if they can find actual causation for each of the symptoms. Since there has never been a scientific causation for ME/CFS, the IOM board must categorize it as CMI (Chronic Multisymptom Illness) treatable by anti-depressants, CBT and GET.
They set the rules on defining their decision making process. Unless this panel can prove causation, it is placed in the psycho-somtic disorder. Do you reallly think they will buck the trend of the last 30 years and do away with CBT and GET? This panel is nothing but a whitewash to get HSS, CDC, NIH etc. off the hook by pointng to an ‘illustrious and distinguish panel of scientific researchers.” Do you really think they will override pressure from the APA and the insurance industry? Why didn’t HHS just acccept the criteria from the ME/CFS experts? It would have been the least expensive alternative for them.
How will the CFIDS, Pandora and Offer handle the fallout if the decision is negative? Why take the risk? Will they be willing to own the moral consequences from their actions if a number of patients lose hope and take their life? Given the prior history on the acceptability of this illness within the medical and scientific communities, advocacy groups shouldn’t accept this sort of risk exposure unless you are certain of a positive outcome.
We have heard from some of the researchers and doctors who signed that Open letter to Secretary Sebelius. Here is the response I received from Dr. Judy Mikovits when I asked here whether the CAA had contacted her.
“Yes they did and below is the response I sent:
To whom it may concern:
I absolutely stand by my work of the last 7 years including my signature on the letter to secretary Sebelius of 9/23 regarding the case definition of ME/CFS.
I know that the CAA is not and has never in my experience responded to concerns expressed by the patients nor do they now or have they ever served in the best interests of the patients as is the only duty of an advocacy organization. This IOM contract is simply a waste of precious resources.
I stand by my signature on the letter and my work which is now always has been and will always be in the best interests of the patients.
Sincerely,
Judy A Mikovits, PhD”
(See: http://www.mecfsforums.com/index.php/topic,17834.30.html )
I do not think this reply leaves any doubt about Dr. Mikovits’ position.
Patricia Carter, Esq.
Admin., http://www.mecfsforums.com
The ME/CFS experts launched a canoe. Every patient I know plus Pandora is helping to paddle that canoe. I welcome the CAA to join with us and paddle with us in support of the ME/CFS experts who are opposing the IOM contract.
The experts are the ones who have worked long and hard to help us, not the IOM. The experts are the ones with years of research and clinical experience, not the IOM. The experts are the ones who should be handed the money, not the IOM.
It was so reassuring to read what Judy Mikovits responded when contacted by the CAA; THAT is exactly the support and advocacy that the ME/CFS and GWI communities need!!!
Thank goodness we have world-class medical expertise and researchers standing up for the truth–and genuinely WANTING to find a cure for this serious debilitating CHRONIC biological DISEASE — that we are sick with day-after-day; year-after-year; decade-after-decade. The people/organizations purposely continually putting up blockades have their own agendas and certainly DO NOT want answers to be found!!!
HOW absolutely criminal to treat people like this–for their own personal and collective political agendas.
There are 2 words to describe why the IOM is happening when it is happening
Insurance. Lobby.
If you (or anyone) has documentation or evidence of this, please share it with someone in the advocacy community.
Thanks for the great summation. Here’s my 2 cents.
Killing very bad ideas is best done as quickly as possible, not after the fact. Just imagine how much better our world would be if the Oxford def. had been killed before birth! Once the IOM begins, it will be near-immortal (not to mention, immoral).
There is are two other telling points that haven’t come up. First is that the IOM is moving ahead during this shutdown. This is a clear and direct ETHICS VIOLATION — the head of the CDC made it clear (on the CDC’s website) that NO non-exempt employee can do ANY work – volunteer, at home, nothing. This also goes for gov’t contractors. No way the IOM is classed “exempt,” If they are unethical now, just wait…
Second is that the second brouhaha about the CDC big study NOT doing repeat exercise testing also shows a clear ETHICS VIOLATION by Unger. She absolutely knows that day one shows patients and deconditioned controls with the same abilities and that ONLY day two distinguishes how sick patients really are. Given her very public support of GET, it is clear that she is INTENTIONALLY sabotaging the study. Talk about unethical and untrustworthy!
The CDC can duck patients/experts’ “opinions” but I really want to see them duck a full Senate Ethics Investigation. THAT is where to begin to unwind this. Nobody cares if we “like” something but flags go up around ethics, fraud (which is what Unger is actually committing by not doing day 2), and waste of taxpayers money (which both covers both the IOM and a spiked study). Shouting from below has never gotten us anywhere… but a full Senate investigation can’t be avoided and can turn into a media circus (CDC being the clowns, of course).
I will go further. It is a highly radical step but I think it makes sense for all of us to act in concert and DEMAND ALL CDC FUNDING HELD (I’m not shouting, just emphasizing) until those violations are fixed. That would gain time to fight further and perhaps force a “compromise” where our experts ARE the committee and the CDC study includes both days. The funding idea ought to have our experts’ input first but money runs the show and without it (as we are seeing), everything stops. We keep citing ACT UP. The way they were effective was to think out of the box and take big risks. Imagine the news coverage on a group of patients so positive that the CDC is wrong that they want research funding CUT temporarily! Not shutting down the Golden Gate Bridge but maybe a start.
A couple points are relevant here. First, the IOM idea was born in secret. We found out about it almost at the last minute, and we did everything we could to kill it. But it was “born” on September 23rd when they announced the contract was signed. It is moving forward. More on that later today.
Second, the IOM is not a government agency. They are independent, and the money for this contract was obligated out of 2013 money which means the money has been set aside for it. I know of government contractors in other areas who are still working (although for how long is not clear). So if the money was obligated before the shut down and IOM is independent, I’m not sure the project is required to shut down. But if anyone has more insight into that, it would be helpful.
Third, a Congressional investigation would be key. There are advocates working on that right now.
Thank you so much for your clarity. This review really helped me get my head around it all. It seems we all want the same thing but have different levels of trust in which processes might bring it!
@Ecoclimber
Ecoclimber said:
“Why didn’t HHS just acccept the criteria from the ME/CFS experts?”
This is the one million dollar question. This would have been the easiest and sensible direction for them to take. CFSAC and ME/CFS experts all want to adopt the CCC now. Why is HHS resisting? What do they gain by resisting?
Sorry, I wasn’t clear. I know it was sprung on us. I was agreeing that we need to work together with intensity to have it revoked or seriously modified before work can begins. A “wait and see” attitude is akin to suicide.
As for the IOM being private and funded, I’m not sure that matters. Military contractors are clearly both but many (all?) have been stopped cold. It is definitely worth investigating if someone knows where to start.
I’m delighted a Congressional investigation is being worked on. What can we each do to move this point forward? Beyond ethics (and that is pretty far beyond), I wonder if “Open Air” laws apply? This clearly was done in a back room.
If the IOM already has a signed contract then they go forward with the work. They either get paid monthly or Per the SOW to me it looks quarterly. So the way I see it the IOM will for the first three months, Seek committee nominations, assemble committee, begin background research; contact stakeholders.
And when they finish that they will submit a invoice for payment for that portion of work.
Readyforlife
@Jennie Spotila
Thanks, Jennie, for writing this timeline summary. It’s very helpful. I appreciate your advocacy efforts.
I think your missing something in the chronological order of events.
Maybe I’m missing it with my CFS brain but I do not see the CAA’s letter to all the supporting experts of the CCC asking if they still support their position of demanding the CCC be used.
Why have you omitted this event?
Actually, I didn’t. I link to the Association’s email to the signatories in the paragraph beginning “Fifth” above.
We need an injunction against the IOM-HHS contract based on the extreme funny business from the get-go of the ridiculously short time (Aug 27-Sept3) for anyone else to compete, the lack of justification for a “close contract” and the subsequent ambush after fraudulently giving the appearance that the contract would at least wait for discussion. Also the unwarranted waste of the people’s money disproportionate to research spending, which reflects the long-running determination of staffers at DHHS not to serve the people of the United States, but rather to run down our prosperity by condemning increasing numbers of the population to extreme disability and death.
In addition, we all need to keep in mind the basic fact that even the best people on the IOM have no reasonable chance of mastering the information on ME/CFS as unpaid members of a committee that only meets sometimes. Even Einstein couldn’t do too well with that.
No everyone does not agree. The CCC is a place to start??? The CCC were published 10 years ago in a journal that no longer exists and most of its original authors have abandoned it.
Combining or mislabeling ME and CFS will NEVER work. Never has. That’s to a
large extent what caused the problems to begin with.
Presenting anything as “Redefining ME/CFS” is intellectually dishonest.
Call it what it is: making up something called ME/CFS. This has become
an ME/CFS turf war for control. As usual patients are the pawns and
will lose either way.
So Deborah, we also need an injunction against the CFSAC (and why
not the bogus “ME/CFS” groups who are selling this).
The answer to the canoe problem is to get a solo kayak. But seriously, to pick up Siobhan’s point about insurance money, a smart guy on PR discovered that WellPoint, an insurance company involved in disability, gave $2 million to the IOM to endow an executive officer position there–so an insurance company has a large “in” to the IOM.
In addition, some of their language on the GW thing is close to the killing phrases with which DSM-V is trying to include us–so there is that link to consider also–the DSM-V will be used to decide what kinds of treatment will be insurable for those with “medically unexplained symptoms” and those other deadly phrases.
Siobhan was very succinct, but I think may be fundamentally correct. I have today emailed a letter to Sebelius including much of this, but may write again (would be my third) to include the stuff about DSM-V implications, and also the great phrase “Timeo Danaos et dona ferrentes” from Virgil–I fear Greeks even when they bear gifts. The IOM evidently did not fear enough, and may have a Trojan horse on their campus. Would love to know who advised Sebelius on this–assuming she is not an expert on ME, as I do assume–she heads a vast empire, and cannot know every territory in detail.
Chris
This point about the endowed executive officer position was raised in the Which Paddle thread, so I’m copying my reply here below. The donation was not made by Wellpoint. The donation was made by Leonard Schaeffer, former CEO of Wellpoint, but he left Wellpoint in 2005. I haven’t found the exact date of his gift to the IOM, but the announcement page I linked to below makes it seem like the donation came years after 2005.
It’s important to be precise about these things. There is a huge difference between a corporation endowing an executive officer position at the IOM, and a former employee of the corporation endowing the position years after leaving that corporation. My fear is that inaccuracies inevitably creep into our statements, and then become part of what is repeated until it becomes “fact.”
We should be vigilant for conflicts of interest at IOM and elsewhere, and we rightfully expect transparency on these issues. But we should also be vigilant by checking our sources and verifying facts as much as possible to avoid creating the illusion of conflicts of interest where there may be none.
Sorry, I guess I was a bit hasty about dates. On the other hand, I am not as generous as you in disconnecting funding sources from effects–there was a notorious case at McGill a while back involving the funding of the research of someone there into asbestos–it was found that he was in fact receiving money from that industry, and producing research claiming it could be used safely, but an inquiry exonerated him, reducing the embarrassment to McGill. But generally “who pays the piper calls the tune” and I remain rather sceptical. We have become very aware of large sums of money given to political parties by companies but distributed through a number of individuals in order to bypass the limits imposed by electoral rules in Canada and hide company involvement in politics.
But you are quite right–we should be, and certainly I should be, more vigilant in checking dates, sources, etc. However, the whole business of the DSM-V and medical insurance, and the phrases used in the IOM treatment of GWS, remain deeply suspect in my mind. As do Dr. Unger’s comments on the non-negotiability of GE–that is not the statement of an inquiring scientist, but of a committed politician. Chris
I agree we have to be vigilant, especially with insurance company money (or other sectors that have a financial interest in IOM outcomes).
@Jennie Spotila
Jennie, I still feel a bit guilty–feel free to remove or edit my post–I don’t deliberately wish to spread errors. And thanks for your clear and accurate mind! Chris
Not to worry, Chris. I think it’s better to leave our exchange there for the next person who hears the same thing.
Dr. Lily Chu has now signed the letter with the other experts, I believe.
AND–I am thrilled to also see my neck of the woods represented on the additional EXPERT signatories–Dr. Alison C. Bested!!