Today, the IOM published the provisional IOM committee appointments for the institution’s ME/CFS “study.” I have only taken a brief look at the list of nominees. Others are in the process of “vetting” the nominees and researching their background. I thought about this long and hard and have come to the conclusion that providing input on the committee members will accomplish little and likely legitimize this rigged game. The fact that the number of nominees who are not experts in the disease (8) exceeds the number of experts (7) quite clearly exposes HHS’s intent in burying our patient population for good with an unscientific definition that will set us back for decades and in producing a result like the IOM delivered in the case of Gulf War Illness. The government quite obviously does not want this disease defined correctly. Remember when Dr. Unger said at the last CFSAC meeting that the CCC are too complex for physicians? I am sure brain surgery e.g., is very complex and only a few physicians are qualified to perform it. Does that mean that we shouldn’t do it at all? Or does that mean that the brain-surgery experts should perform the surgeries and educate the non-experts on what they need to know? The difference in approach here is that people who are required to have brain surgery are considered to be sick. We are just considered to be lazies and crazies.
I mean no offense to some of our more esteemed experts who were nominated, but the concept of convening a committee with any non-experts, let alone with a majority of non-experts, is nothing short of ludicrous. It’s insanity that is not even in the realm of reasonableness. The rationale reportedly given by the IOM, i.e., that the definition “will be used by physicians/clinicians with and without experience in ME/CFS, so the participation of committee members from both perspectives is very important” is mind-boggling. In no other area of any significance or in any complicated field would the definition of a crucial issue, such as a disease definition, be turned over to non-experts. It’s unthinkable.
This is like saying that we should have law students on the U.S. Supreme Court because they will one day be required to interpret Supreme Court decisions. Hey, why not let dermatologists decide what the best way to perform open-heart surgery is? After all, they may have to deal with the cosmetic aspect of the scar left by the surgery at some point.
It might make sense—after completing a first draft of a definition for ME/CFS—to have a session with non-experts, such as internists, family doctors and pediatricians to let them ask questions and give input and based on that to refine the definition. That seems sensible. But the question of educating non-experts on the definition is a separate one and letting know-nothings—those who have no prior experience with this extremely complex disease, maybe the most complex disease of our times—determine how it will be defined is indefensible.
The idea that the IOM committee for ME/CFS will include a majority of non-experts reminds me of comments made by Republican Senator Roman Hruska of Nebraska about Nixon’s nomination of G. Harold Carswell to the U.S. Supreme Court. In response to criticisms of Carswell as being a mediocre judge (58% of his decisions as a federal district court judge having been reversed on appeal), Hruska said: “Even if he was mediocre, there are a lot of mediocre judges, people and lawyers. They are entitled to a little representation aren’t they, and a little chance? We can’t have all Brandeises, Frankfurters and Cardozos.” Carswell was rejected by the Senate. Harry Blackmun was ultimately appointed and later wrote the majority opinion in Roe v. Wade.
As if the appointment of non-experts was not bad enough, one of the nominees is a mental-health expert. I thought even the government had moved past calling this disease psychological. At least it pays lip service to that effect. The FDA classified ME/CFS in the group of serious or life-threatening diseases. This IOM panel is not a committee on coping mechanisms for the disease. Talk therapy can be helpful for ME patients, as it could be beneficial to any patient with a serious chronic disease. But why in the world would a professor of psychology who researches mental-health services be involved in defining the disease? And what makes her think that she is up to the huge responsibility she is handed for very suspicious reasons? Why is she not wondering what she could possibly contribute?
Most of the appointments are completely outrageous and yet some patients are almost relieved because it “could have been worse,” because we all expected the government to stack the deck against us with non-experts. Are we so used to being treated as sub-humans that we rejoice over any crumbs that are being thrown to us, no matter how rotten they are? This reminds me of the ludicrousy of the East German government’s propaganda. Everybody was expecting it and we all figured that there was nothing we could do about it anyway.
Well, we can do something about this and that is unconditional resistance. Let’s not lend credibility to this kangaroo court by deluding ourselves into thinking that we have influence over the outcome of the IOM “study” by giving input on the appointees. The only way we will survive this rigged game is by continuing to demand the cancellation of the IOM contract altogether. Compromising means surrendering.
I posted this comment to the CAA’s “Clearing the Air” letter on October 8th: “Why does a committee assigned to create diagnostic criteria for CFS need a specialist in “behavioral health”? If the disease in question were breast cancer, would we accept this? Of course not!”
The writing was unapologetically on the wall.
I’ve had CFS through most of my teens, ALL of my twenties, ALL of my thirties, ALL of my forties and now I’m starting my fifties. This is shameful. Truly shameful.
“Why does a committee assigned to create diagnostic criteria for CFS need a specialist in “behavioral health”?
And now we know the compostion of the IOM committee–weighted with non-experts and that includes a mental health expert. As has been stated by many, numerous times–it all makes NO good sense and is completely ILlogical and IRrational–NUTS!!–as to having NON-experts defining the COMPLEX disease of ME/CFS. ‘The powers that be’ also know this and are trying to pass this NONsense off as sensible! Welllll, we may have ‘brain fog’ but we are NOT fools!!
The explanation given for choosing NON-experts is astoundingly ridiculous!! Excellent examples and comparisons of experts vs. non-experts, Jeannette, and thank you for speaking clearly to this ‘Twilight Zone’ . . . ‘Somewhere Out There’.
‘On the surface’ this may look like some sort of ‘appeasement’ as to seven out of fifteen names on the EXPERT ‘side’–some with ‘expertise’; some with ‘knowledge of’ ME/CFS. I am completely UNfamiliar with names on the NON-expert ‘side’. I am happy to note Dr. Lily Chu’s name on the committee and all that she stands for and advocates for in the fight for the truth and justice of p/w ME/CFS.
HOWEVER, we must look at the whole picture as to the ramificatiions and predetermined ‘agenda’ set forth for this committee to participate in–fraught with problems, obstacles and NONsense. This is our very lives we are fighting for–we do NOT want to be buried ALIVE in this disease of ME/CFS forever; all these YEARS up until now has been waaaay toooo long–and time is running out as we are aging. I know that I am speaking for ‘all of us’ in saying–I want my life back to ‘live’!!! And then there are the young children and teens and young adults AND the NEXT generation–our children / ‘their’ children included!
YET, ‘no matter’–that is of little to no consequence to those with the ‘agenda.’ Remarkably, there are those who have burying us in this horrid disease of ME/CFS as their ‘high priority’ checklist. My gosh–who is ME/CFS going to strike next should top their list of priorities, questions and MAJOR concerns, as well as of most importance–how to STOP ME/CFS in its tracks–noting that this has become a world-wide health CRISIS running WILD with NO FIX–and to quote from Erica’s blog–‘a walk and a talk’ will suffice . . . There is a real fundamental problem here–that those with the ‘agenda’ are trying to pass off as ‘the norm.’ W A K E U P ! ! !
ABSOLUTELY in agreement with the EXPERTS and RESEARCHERS and ADVOCATES who have led and are leading the way in asking for the CANCELLATION of the IOM contract. Adopt the CCC immediately–get rid of these ‘harmful’ ‘purposefully destructive’ politics–and allow the SCIENCE for ME/CFS to PROCEED forthwith.
attempted appeasement it is.
re being happy about certain committee members being appointed, i believe that is a very slippery slope. this is why some of the most esteemed experts have declined the invitation to serve on the panel. they were going with their conscience and i applaud them for it.
Point well taken!!!
in my mind, the key is to not engage on feedback on the appointees. once we do, they can claim we were heard. we can voice our opinion about the crazy idea of non-experts on social media, “real” media and in the forums and on the blogs. but i personally would be very reluctant to engage with the IOM or the gov’t (executive branch; politicians would be great on the other hand) about specific committee members.
As a UK citizen, I am concerned that this “rigged” process will result in a definition that will be eagerly adopted on this side of the Atlantic and there isn’t anything at all that I can do to stop it.
However, one has t hope that research in other parts of the world (such as Scandanavia) will deliver results quickly enough to pull the rug from under this shameful injustice.
Here in the UK we can help by supporting and funding biochemical research like Invest in ME’s Rituximab trial (which, no matter what you think about the drug itself, will surely be good Science and a positive contribution); We can keep on demonstrating the intellectual arguments against physical diagnostic criteria and biochemical research are nonsensical. We can effectively and absolutely resist unwarranted psychological treatment and instead use our experience to systematically weed politics out of Medical Science.
Hopefully we can thereby help our US #MEcfs pals overturn what does look to be an extremely arrogant response to the world’s experts in this field. In short, Post Exertional Malaise notwithstanding #MEcfs, sufferers from around the globe must work together.
extremely arrogant, indeed!
and yes, research of a serious drug, such as rituxan, is where our hope lies.
Well said, James. Very intelligent comment.
agreed on both counts.
Well said. Stick to basic points: we already have a research and a clinical definition created by experts; why are they wasting money to CONTRAVENE those results?
it’s amazing that it’s worth it to them to spend $1 million dollars on this. this shows us how serious they are in once and for all burying this disease. they mean business. they are trying to force this through no matter what.
Speculation is a tricky business, as a recent ‘encounter’ of mine has shown. To be the devil’s advocate for just one moment: what evidence do we have, in THIS instance, that the goal is to bury the disease? Are we entitled to know what the FULL brief of this committee is (but perhaps it is already available and I don’t know about it)? The unknown always arouses panic. However, the structure of the committee alone forecasts problems.
let’s just say i would prefer not having to speculate, too. but the secrecy of the government doesn’t give us that option.
“Well, we can do something about this and that is unconditional resistance. Let’s not lend credibility to this kangaroo court by deluding ourselves into thinking that we have influence over the outcome of the IOM “study” by giving input on the appointees. The only way we will survive this rigged game is by continuing to demand the cancellation of the IOM contract altogether. Compromising means surrendering.”
I wholeheartedly agree. Total, unconditional resistance is the only answer! After all, we are fighting for our LIVES! And we know what will happen if we surrender–30 more years of pain and death for M.E. patients. And a definition of the disease as psychological, with the attendant advice to physicians to give us antidepressants, behavioral therapy and exercise.
“After all, we are fighting for our LIVES!”
CFS/ME on Trial
How many times over the last few years have we ME/CFS sufferers and carers been on trial? It is growing tiresome and depressing, to say the least.
It appears to me that one of the goals of such trials is to contain an administrative problem involving head counts, costs and budgets.
I see no gain other than this, unless by the grace of God, some members of the jury/committee selection have truth in mind for any new definition or description/prescription of ME/CFS.
I have seen this process before, and if history is to repeat itself, then a few self selected directors of this committee will decide the fate of millions of people around the world, because their opinions overrule the yes men in the committee whose experience in this field is of minimal value.
This leading minority will charge themselves with the work of using scientific evidence according to arbitrary rules such that preconceived notions of theirs will be served while, at the same time, they simultaneously satisfy unknown agendas from above their ranks.
The final task will be to present such work that have ‘done’ in a manner that appears decent and reasonable to those who no better and have nothing but innocence and good will as their guide. At least that is what they will have in mind.
Right now, our hands are indeed tied. No entreaties at this 11th hour will sway what is already underway. Do not waste your time writing to these people as they will not listen.
Does this committee hold such power to dictate? I think not, as real experts will indeed stand up for truth if the outcome of this project is beyond the pale. Debate is healthy. Democracy is healthy. There is nothing to lose here, once their cards are on the table.
i agree with almost everything you said, John, except that I am afraid that we have everything to lose. once and for all. that’s the whole point of this exercise. makes us go away for good.
I think we may lose this battle, but I feel we will win the war – crystal ball analysis here.
let’s have a bet, john: i bet we will win this battle 😉
Jeanette, thank you again for your intel, sharp analysis, and contagious passion. We should all be enraged. Your legal work and information gathering has been invaluable to the ME community, however, I feel like even if the IOM contract is cancelled, we need to organize. Now is the time. We still need to raise awareness and demand action in a variety of ways to a variety of constituents and we need to start doing this immediately. I propose we form a coalition of ME groups to make this happen (experts, advocacy groups/individuals, patients). Involving experts in this effort is KEY. (That’s the way that Fibromyalgia was able to gain more legitimacy faster than CFS/ME – because scientists drove the movement. I read an academic thesis about this topic). Who believes we need to form a coalition? Who is willing to help, to lead? Is this blog the right platform to get answers to these questions?
yes, after the IOM contract is cancelled, we need to work in funding for research.
i am so utterly exhausted right now that i can’t think past this death-knell “study” at the moment. unfortunately.
PS: we will need all of our strength right now to fight this contract because if the “study” proceeds, all other points will be moot.
I agree with you both. We need a bigger platform. The press would be the best, but government debate should also be considered. We are ‘little people’ right now. I am hoping that the ‘contrived’ results of the study will be enough to trigger outrage.
I am amazed at your strength Jeannette. It is hard to keep shouting at what seems to be a brick wall. Why there aren’t more like you doing exactly what you are doing is surprising. It is difficult for you to go on and on and on. But you are doing what few others are even willing to do. You see what others can’t. You have the passion that many others lack. Fortunately, you are definitely not a lone voice in the wilderness. We believe in you very much.
None of our points will be moot if the right people are behind you. Then others will fight FOR you and with you. The platform from which we discuss is here in your blog. The platform to make a difference is maybe elsewhere, but here is a very good start.
thank you, john. you are very kind.
it’s been quite challenging at times. i do have the passion and once i commit to something, i stick with it. especially when i am so clearly on the right side of the issue. but i have had to push so much harder than is reasonable. i guess having been suppressed by the government in east germany for the first part of my life made me promise to myself not to let it happen again.
What if the input was that the 50 who signed the letter are the only ones qualified and acceptable to us to be on the committee? Nobody else. Then we’d get the CCC but the research since it was written for a completely up to date document. With all the international input it could be presented to WHO to have it adopted world wide.
yes, that would have been a reasonable course of action for the government/IOM to take. that’s what would have happened with every other disease and in every other serious field.
they don’t even care that they are so transparent (as in obvious, not in open). it doesn’t matter to them because in their minds the problem will be solved by march of 2015.
The Scope of Work or the Task of Work (however it is named) is ONE of WILD CARDS in the IOM contract. The IOM contract ‘makes NO sense’ and is scripted out for a PREdetermined outcome–LOCKING the committee into ONLY those paramaters–‘entrapment’ and, consequently, LOCKING us into a DEATH sentence–perpetuating the status quo of DISallowing the TRUTHS and SCIENCE of ME/CFS to advance..
WHAT THE IOM CONTRACT IS ALL ABOUT–‘their agenda’–is EXACTLY why the IOM contract must be CANCELLED!!!
I think there are two mental health experts here, not one. Alegria and Mulrow. The rules of evidence may be used to over-ride our experts if they cannot sway the process. Their best option may be to resign as a block at a later date, leaving no experts behind. This will discredit the process. It might however damage their careers. It will be a tough call for them.
i will take another look at the list, alex. thanks!
and yes, it will be a tough choice for experts considering resigning: giving up all they’ve worked for or going along. i don’t envy them.
In Australia, when a Committee was set up to legally tie down medical practitioners as to what they could and could not do in evaluating me/cfs patients, the bar was set so high that good evidence was excluded on the basis that it had NOT BEEN REPLICATED elsewhere. Therefore, what was ‘allowed into evidence’ was so skewed that it became both uninteresting and so very uninformative. The Australian Guidelines turned the illness almost into a non-event. The outcome of all of this was narrow minded and exclusionary waffle, insofar that matters of potential worth were tacitly banned from acceptable medical practice.
The rules of evidence should be a CRITICAL focus point in any debate on these issues.
the same will happen here: most of the research will not be taken into account because it wasn’t replicated. the difference will be that this will not be a non-event. insurance companies will stop paying for treatments and potentially also disability benefits if patients refuse GET and CBT. that’s the whole point of this exercise.
there are reports of vets being refused treatment at the VA because of the last GWI IOM report. this stuff is real. it does some real damage.
Is that the insurance companies talking there running the show ??
meaning–In Australia–is that the insurance companies running the show?
The insurance companies in Australia – let’s say, the situation is more about biased doctors. The law is the law, and lawyers are capable of identifying real evidence when they see it, despite these well recognised biases.
I have been saying as much on facebook and at Phoenix Rising. Most people do not seem to get it. The idea is acceptable experts equals acceptable outcome, or something. Yet as I have said repeatedly, controlling the terms of reference, the evidence allowed and disallowed, and how that evidence is treated, can control the outcome. With the same potential evidence you can get opposite results.
Most of my posts lately have been on the criteria to be used. We can only guess, but I think something like the Cochrane GRADE system is likely. There are however options within GRADE that might work to our avantage. I am currently looking into that.
Evidence based medicine is ostensibly about rating evidence. It however classifies evidence into layers. It is the nature of ME and CFS research that much of it is unreplicated, that results are often contradictory, that vastly different cohorts are used (compare CCC to Oxford) and yet we are supposed to consider one rating scale for evidence? Yet all psychiatric interventions are not double blinded, are based on subjective evidence, and are based on hypotheses that are not only unproven but unprovable. They cannot be tested.
The only saving grace, for now, is that diagnostic related papers and CBT/GET interventional papers are about different categories of evidence. The IOM study is a diagnostic review, not a treatment review. There is no good study substantiating psychogenic causes for ME or CFS, they are all the lowest grade of evidence possible, and debatably might not even be considered valid evidence.
EXACTLY–the hopes and dreams about the potential outcome of the IOM contract can be classified into wishful thinking. ‘Wishful thinking’ is understandable in a community of debilitating never-ending illness. BUT wishful thinking is NOT the reality of this DIRE situation for us with the IOM contract, and we must be WISE to that. NOT when the terms and parameters of the IOM contract are SET UP to have a predetermined outcome — as was SET UP with the GWI and IOM contract–look @ those disastrous results for the veterans 😦 See the situation in Australia! That will be next for ME/CFS!
Don’t you see–even with EXPERTS on the panel–the EXPERTS are NOT free to use all the new research information out there, not yet published–but all in process, etc., etc. The default will be to OLD, OUTdated MISinformation because that is on the books. WHY the rush to ram IOM through . . . before the SCIENCE? The agenda is there; the EXPERTS will be working within the SET-UP CONfines of the IOM contract–and the PREdetermined outcome.
Although the IOM study is a diagnostic review, recommendations can be made about treatments.
Thanks for keeping us updated Jeanette. Another process of trying to sweep ME under the rug. If this is adopted, the UK will use it as a go ahead to further promote their deluded view of ME.
I was hoping that more people would have added comments by now, so that more ideas would be put forward.
It is uncertain how many are aware of what is going on. My patients don’t know anything about these matters. They need to be reached as do millions of others who have me/cfs.
This lack of awareness is a concern, as is the lack of feedback from those who can still demonstrate their skills in defiance of the unacceptable.
Alex and Ess. What powerful words. You have my support.
I wish I could be congratulating more people like you.
This situation, where the blind lead the way for those that can see, is nonsense and stupid at best, and dangerous at worst. I will not be led over a cliff edge by a blind person, especially when I can see what is right in front of me and they can’t.
I am amazed (as well as outraged) that there are ANY non experts as members of the committee.
I am amazed that a criterion for membership is having achieved the exalted heights of publication.
I am amazed that these non experts supersede clinicians, even if the latter have not published at all.
Clinicians themselves uniquely have the ability to fine tune a scientist’s understanding for they alone have seen what has been invisible to scientists.
To say that “there is no evidence for x” usually refers to published data. It often differs from clinical experience. Published data itself is prone to bias, and papers can be excluded from publication if the status quo will be shaken or challenged too rigorously.
(BUT, God forbid – isn’t THAT what science is all about? Is it not TRUTH that should rise above politics and greed and isn’t this the essence of REAL science?)
No one would support a flight path to catastrophe, no matter who the pilots are. The pilots here will bail out before the plane crashes. The millions of passengers will be mutilated or even perish. But who were the ones who defined the awful flight path – and more importantly, why?
You raise some very VALID KEY points and observations, Dr. Whiting–thank you very much for SPEAKING UP WITH US!! And, thank you also for your kind words of support.
All of this PURPOSELY LUDICROUS and NON-sensical DYSFUNCTIONAL behaviour thrown at the disease of ME/CFS and p/w ME/CFS — from one government committee/agency/department to the next OVER DECADES = a TOXIC and (potentially) LETHAL environment to the ME/CFS community. It IS INHUMANE . . .
It is becoming clearer and clearer that there is a ‘secretive’ PLOT hiding in the background–not wanting to be EXPOSED–putting up barricade after barricade AGAINST ME/CFS discoveries–IMPRISONING and BURYING p/w ME/CFS in horrid debilitating illness. EXACTLY–WHO is responsible for this–WHAT type of mindset is behind all of this ?? Are some being BLACKMAILED or THREATENED to ‘keep quiet’ behind these barricades ?? A NORMAL SCIENTIFIC approach to disease is to get swiftly to the answers and heal people, and STOP the disease from spreading. BUT, not so with ME/CFS; in fact, quite the OPPOSITE!! ME/CFS ‘somehow’ ran aground with being ‘caught and TRAPPED’ as a POLITICAL disease–perpetuated in NO answers. Again–the question of WHY ??? AGAIN–this is INHUMANE treatment of the ME/CFS populace. This is THEFT of LIFE and LOSS of LIFE on a MASSIVE scale!!!
As to your apropos analogies of a (purposely planned) CATASTROPHIC flight path–YES, as EVIDENCED by history, these pilots WILL bail out when the plane crashes–they are trying to HIDE and cover up their secrets right now, as they dig in deeper and deeper. All these years we p/w ME/CFS have been MUTILATED by their actions and inactions and that mutilation is getting WORSE–there are MILLIONS of us, and the numbers of p/w ME/CFS are spreading WORLD-WIDE.
EXACTLY–WHO is COWARDICING at the TOP of this CHAIN and WHY?? EXPOSURE and swift JUSTICE is imperative.
To bring about MOST critical awareness and justice–must we go to the WORLD HEALTH ORGANIZATION . . . ?? What is going on in the U.S. of A. is BIGGER than the US–it is GLOBAL!!!!
I have no doubt there is a lot going on behind the scenes. I am less sure its a plot, as human stupidity, bureaucratic ossification, and cognitive dissonance can cause huge damage. So can the financial support being received by those who are benefiting from all this. Its entirely possible for many to be selectively paying attention to only those arguments that support their financial self interest. This is not conspiracy, this is business as usual, and totally unscientific.
This of course raises the question of blame for researchres involved who push non-science. Blame is very hard to demonstrate, you can only implicate without hard evidence. However the concept of responsibility is more pragmatic. Many may or may not be to blame, but someone is responsible if they can fix it, have a duty to fix it, and fail to do so. .
Looked at as a failure in responsibility the entire medical profession, with a small minority of exceptions, is responsible. So to a lesser extent is the scientific community. Responsibility ripples out like a wave. WE as patients are also responsible, because we could change things with stronger advocacy, but most are not to blame. Most are too sick or just struggling to get by, or unaware, or don’t use the internet to investigate their illness and its issues.
INDEED, I couldn’t agree with you more, Dr. Whiting; shocking amazement that there are ANY non-experts of ME/CFS on the IoM committee–utterly NON-sensical; makes NO sense at all!! Yet, when questioned directly receives ‘iffy’ dismissive explanations that leaves one shaking our collective heads–AND speaks LOUDLY as to the HHS/IOM agenda in reaching their intended outcome in UN-defining ME/CFS.
Within the context of intelligence and integrity–this is ‘movement’ AGAINST p/w ME/CFS is completely contrary to social justice equals PERSECUTION.
PERSECUTION as defined in the dictionary —“a program or campaign to exterminate, drive away, or subjugate a people because of their religion, race, or beliefs: the persecutions of Christians by the Romans”—there we are ‘because of the disease ME/CFS’.
The IOM has a requirement (in their charter?) to have at least a quarter people from outside the area in question to be in a review. Once you sign up for the IOM process you sign up for that. The HHS would have been well aware of this.
How many people know that Dr Paul Cheney’s findings on head up tilt echocardiograms have been replicated in several locations around the world? I have found the same results, now in at least 50 patients.
Does anyone know what a low cardiac index is, and what its significance might be?
Why have we all not published this data? The answer is simple. We don’t have the time and other resources to do so.
But this is only the tip of the iceberg. There is so much unpublished data of high relevancy in existence. The world of me/cfs would be greatly enhanced by talking to clinicians of high calibre, if only this was duly recognised and their findings duly noted.
This may change once we have a global database to post results in, like the Open Medical Institute and others are trying to create. That can then be used to write papers.