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Death Contract? ME/CFS Experts and Advocates Unite to Oppose US 'Case Definition' Contract

Discussion in 'Phoenix Rising Articles' started by Mark, Nov 1, 2013.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    View the Post on the Blog

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  2. alex3619

    alex3619 Senior Member

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    In terms of death contracts, this has been discussed in other contexts, by other advocates. I do not know if they want to go public yet, doh, my brain is frazzled right now. This is potentially death to availability of treatments, death to research, death to insurance or benefits, death to acceptance of any biomedical model, and with all that, death to hope and real death to patients. If you want a model of how this general approach has worked in practice, look at the UK. Then ask if you want that happening in your country?

    Who do we trust? Our experts. What are they saying? Adopt the CCC, abandon the IOM, and proceed to get on with the science from there.
     
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  3. parvofighter

    parvofighter Senior Member

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    Thank you Mark and Gabby for your thorough review of the IOM situation. As Alex has so aptly noted, this is Death for us in just so many senses of the word. It's a real yin/yang scenario, because while it is so very exciting to - for the first time - see the tangible support of 50 international M.E. experts, the butcher-job that IOM did on GWI is frankly, terrifying.

    Given the strategic threat this IOM contract poses, and the limited energy of ME patients, my only suggestion would be for you to provide an Executive Summary with action points that the most ill patients can digest quickly and easily. Then again, you may already have done that, so I apologize if I have missed it.

    I have written to pieces on Facebook:
    - REBUTTAL TO THE CAA on their "Let's clear the air" piece, which I entitled, "CAA's IOM stance is in direct conflict with their Logo: Sharper Focus, Deeper Impact, Accelerated Progress", in which I demonstrate that the CFIDS Association of America is contradicting their own corporate motto by supporting the IOM contract. For an organization that is ostensably NOT an advocacy organization (recall their public vow a year or so ago to shift to a "laser focus" on research, not advocacy), the CAA has once again acted in direct violation of the patient community's wishes, the expert clinicians' recommendations, and indeed the CAA's own strategic focus. THIS is something their board and fledgling CEO should be very, very concerned about. You can view my analysis of their strategic blunder here (https://www.facebook.com/notes/maxi...go-sharper-focus-deeper-impac/591352450923791 ) or here(http://www.research1st.com/2013/10/08/clearing-the-air/#comments ) under the pseudonym Maxine Smith).

    - REBUTTAL TO HEALTH RISING'S "MIDDLE OF THE ROAD" POSITION: There are multiple errors of logic, which you can read about here (https://www.facebook.com/notes/maxi...-efforts-to-stop-iom-contract/600823269976709 ).

    Lest it help anyone's advocacy initiatives, feel free to cut and paste, with credit to the source.

    Edit: fixed hotlinks.
     
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  4. alex3619

    alex3619 Senior Member

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    As I mentioned somewhere else, the CAA's action is entirely consistent with their not being an advocacy organization. They are using what appears to be a business model to further research. The mistake is in assuming that getting out of advocacy means they are out of the game. They aren't, and have their own agenda. Whether one agrees with that agenda is a whole other question.
     
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  5. Sparrow

    Sparrow Senior Member

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    I think we desperately need our own experts on that panel.

    This illness is not an easy one to understand, and looking through the research without context will give at best an incomplete view and at worst a terribly wrong one. People trying to define this illness without the benefit of expertise in the field will inevitably get it wrong, even if they had the very best of intentions in the world.

    I don't think they're going to shut this down. We're already crying out against it. We've already flooded them with letters. We already have statements from expert clinicians opposing the action. They have not stopped. They have not slowed down. They are continuing to staff their panel. Should they stop? Of course. But if they don't see that now, what are the honest chances that they will? Given the risks, I think we need to continue to be clear that we object to the action, but we also need to start stacking that deck as firmly in our favor as possible. That is not the same as giving up, and it does not mean we can't continue to fight to have the whole thing scrapped.

    Consider the consequences of failure. If it goes forward full of experienced ME practitioners, it may turn out something less than ideal and would still be a waste of badly-needed funding. But having this go forward without stacking that thing with as many experienced ME experts as we can could be absolutely tragic. THAT is the real nightmare scenario. Even if there was a tiny chance that this was going ahead, I would be scrambling to push as many knowledgeable people at that thing as I could.

    The Gulf War Illness patients have given us their advice. They've told us that their biggest regrets were not having enough experts on their panel. I think we would be absolutely foolish not to listen to them. We cannot let ourselves be so angry that it's going forward that we don't do everything we can to mitigate the possible damage if it does.

    So I fully throw my support behind the patient groups and doctors who are trying to make sure some knowledgeable people are involved with this thing if it happens. We can do that without changing our message, and while making it clear that we will be involved with it only under duress and to prevent incompetent results. Does it lessen the chances of it being thrown out completely? Maybe, a little. But is it worth that risk to prevent the worst from happening? I believe that it is, hands down. Please, please, let's get as many knowledgeable doctors on there as we can.
     
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  6. akrasia

    akrasia Senior Member

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    Excellent, fair summary of the current thinking about the IOM issue.

    Why a resolute No matters. @Delia has written on the power of no and the IOM. There is honor and efficacy in this stance, and honor matters. Greece celebrated its No day just this past Monday, remembering the immediate response by its Prime Minister to the "offer" of the Axis powers to "permit" a partial occupation of the country. Shortly after the "offer" came the boot. They suffered one of the worst occupations of World War 2. But they celebrate their No.

    People with M.E., because of terrible advocacy, have colluded with demeaning and useless policies. This happened because of a desire for access, a place at the table. But what can come of a place at the table if our "partners" have been spitting in our soup and all we can summon is a weak smile and take another spoonful.

    That's one aspect. The other is that No has efficacy. The experts who signed the CCC letter did so with the knowledge that the contract would probably go through. It's throwing down the gauntlet, a challenge to the panel in a couple of ways.

    Whoever serves will have to do it with the knowledge that many of the major clinicians and researchers think what they've embarked on is a folly. And if the document that emerges is like the one the Gulf War vets received, this letter by doctors and researchers both here in the U.S. and internationally will represent a resounding reproach.

    Bob Miller points to the imminent release of Lipkin's research results and argues that this will be a major mediating factor. But will it be a mediating factor given the customary bad faith shown by DHHS in the immediate run up to the contract and the ongoing lies and marginalization practiced by both the CDC and NIH. If Dedra Buchwald, our Esther Crawley, a director of a NIH center of excellence in Washington state, is the point person for a discussion of fatigue in the IOM vet's document what can be reasonably expected.

    I think Lipkin's impending results is a driving force for the DHHS to reassert control over the definition, to create a narrative that absolves them of responsibility and places the disease back in their control. They are under a kind of threat which will be even more motivation to rationalize the history of their involvement with M.E.

    But Lipkin is a formidable player and the DHHS knows that his work will carry cognitive authority. How they'll go about relating to it, well, we'll see. Still, there's no reason to join them in this, when the stakes are so high, the power differential so lopsided, and the outcome unknown.

    While @Neilk (Gabby's) scenario is vivid and chilling, it is a worst case. My worst case is the IOM causing obfuscation and delay, which is bad enough because it means vast suffering and death. In the long run, the science will prevail. But as they say, in the long run we're all dead.
     
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  7. alex3619

    alex3619 Senior Member

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    My understanding of the IOM panel selection process is incomplete. Do we have detailed criteria somewhere?

    I think they first want unbiased people. So that might in some interpretations rule out our experts. The real killer is this: they want diversity of experts. That will bias the results, even ignoring the rules they use to govern stratification of evidence.

    They know who they can appoint to experts. They can figure that out on their own and appoint people who know what they are doing. I don't think they will though. I think they have in mind a broad group of fresh minds, maybe including one or two experts on ME, but one of those might be of the biopsychosocial persuasion.

    Its the scrutiny with which we watch them, the clear message we send, and above all (as @akrasia points out) the knowledge that 50 (and probable more) experts will be watching with a critical eye, that may keep them focused on a fair process. Sending in lists of people might mean nothing. We had no time to find out if most of these are available - many wont be. Further the selection process does not have to select any of them, they might just select a token one to three.

    If there is progress on selection it will come from two sources. One, is the people who put forward names. The other is the people who make dead sure the IOM know they are being watched closely, including the real experts on ME.

    I hope they know we are watching. I hope if we can't stop them (and that is not decided yet) they decide to appoint many of our preferred experts. I also hope the rules of evidence fit the complexity of ME research. Usual evidence-based methodology is best used on clear and established bodies of research, with distinct and non-heterogeneous definitions and cohorts. That definitely does not apply to either ME or (especially) CFS.
     
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  8. medfeb

    medfeb Senior Member

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    Excellent article, Mark and Neilk. Thank you!
     
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  9. Lacey

    Lacey

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    Yarbles. All I know is I feel real pain, and need someone to fix it.
     
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  10. Nielk

    Nielk

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    Alex,

    This is what it says on IOM's website regarding the selection of their panels:

    Stage 2: Committee Selection and Approval [top]

    Selection of appropriate committee members, individually and collectively, is essential for the success of a study. All committee members serve as individual experts, not as representatives of organizations or interest groups. Each member is expected to contribute to the project on the basis of his or her own expertise and good judgment. A committee is not finally approved until a thorough balance and conflict-of-interest discussion is held at the first meeting, and any issues raised in that discussion or by the public are investigated and addressed.

    Careful steps are taken to convene committees that meet the following criteria:

    • An appropriate range of expertise for the task. The committee must include experts with the specific expertise and experience needed to address the study's statement of task. One of the strengths of the National Academies is the tradition of bringing together recognized experts from diverse disciplines and backgrounds who might not otherwise collaborate. These diverse groups are encouraged to conceive new ways of thinking about a problem.
    • A balance of perspectives. Having the right expertise is not sufficient for success. It is also essential to evaluate the overall composition of the committee in terms of different experiences and perspectives. The goal is to ensure that the relevant points of view are, in the National Academies' judgment, reasonably balanced so that the committee can carry out its charge objectively and credibly.
    • Screened for conflicts of interest. All provisional committee members are screened in writing and in a confidential group discussion about possible conflicts of interest. For this purpose, a "conflict of interest" means any financial or other interest which conflicts with the service of the individual because it could significantly impair the individual's objectivity or could create an unfair competitive advantage for any person or organization. The term "conflict of interest" means something more than individual bias. There must be an interest, ordinarily financial, that could be directly affected by the work of the committee. Except for those rare situations in which the National Academies determine that a conflict of interest is unavoidable and promptly and publicly disclose the conflict of interest, no individual can be appointed to serve (or continue to serve) on a committee of the institution used in the development of reports if the individual has a conflict of interest that is relevant to the functions to be performed.
    • Point of View is different from Conflict of Interest.A point of view or bias is not necessarily a conflict of interest. Committee members are expected to have points of view, and the National Academies attempt to balance these points of view in a way deemed appropriate for the task. Committee members are asked to consider respectfully the viewpoints of other members, to reflect their own views rather than be a representative of any organization, and to base their scientific findings and conclusions on the evidence. Each committee member has the right to issue a dissenting opinion to the report if he or she disagrees with the consensus of the other members.
    • Other considerations. Membership in the NAS, NAE, or IOM and previous involvement in National Academies studies are taken into account in committee selection. The inclusion of women, minorities, and young professionals are additional considerations.
     
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  11. alex3619

    alex3619 Senior Member

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    I had read this before @Nielk, but forgot where. I also worry its too brief. Its general principles, with little in the way of specifics. My earlier argument was based on some of these points. By going for diversity, "balance", and National Academy membership preference, it can easily create distortions in science. This is not very likely in clear and homogeneous definitions and cohorts leading to objective science, but its increasingly likely as cohorts become more heterogeneous and definitions give increasingly different cohorts and results, and when the science is based more on subjective interpretations.

    Its a chicken and egg problem. How do you get a good definition when the evidence used to define the definition is to some measure based on bad definitions? I do have Oxford in mind when I write that, though Fukuda does not fill me with confidence either. If they select panel members, even in good faith, to reflect diversity in the research data from all sources, then a distortion exists right from the beginning. Chicken and egg.
     
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  12. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Thanks Mark and Gabby for that thorough piece.

    Crucially, according to ecoclimber (I personally have just seen the first and last), all nine numbered volumes the IOM has put out on GWI have implied that "CFS" is a psychological condition and stated that CFS can only be treated with CBT, GET and antidepressants. Yes, CFS, that wasn't a typo, they address CFS in each one of the nine GWI and panel members like Dedra Buchwald include the usual deadly misinformation from the Wessely school.

    To think that IoM will suddenly change its stance it has repeated over and over again since GWI volume 1 in 2002, is dreaming. This contract MUST be stopped!
     
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  13. parvofighter

    parvofighter Senior Member

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    @akrasia, you hit the nail on the head. This is all about a sense of urgency, and the longer we suffer under the umbrella of Lumping - which prevents any meaningful identification of biomarkers, and hence biomarker-targeted treatments - the longer we suffer, period. You said it so well, and it's simply chilling:

    "In the long run, the science will prevail. But as they say, in the long run we're all dead. "

    One need only look at how many people were well enough to regularly contribute to PR (myself included), during the XMRV heyday, and see how relatively limited many of these people are now. As advocates become more seasoned, they often become sicker too; certainly not cause-and-effect, but a result of the relentless progression of this disease with time.

    And hence any cooperation with IOM eats up valuable time... time that we don't have.
     
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  14. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    And now IoM has Dr. Vernon on their CMI/GWI redefinition panel. Dr. Vernon; of all the medical experts in the US, why was she chosen for the panel?

    Her only expertise, of which I am aware of GWI or drafting case definitions, is that she co-authored the patently fake Reeves CFS criteria. The only plausible reason IoM put Dr. Vernon on the GWI redefinition panel, is that they like the Reeves Criteria she co-authored and want her to do the same thing to GWI/CMI.

    Now with them putting Buchwald and Vernon on the GWI panels, what type of experts do you think they are going to put on the MEcfs redefinition panel?
     
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  15. jace

    jace Off the fence

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    Parvo's hotlinks are still broken, but you can follow them by copy-pasting into your address bar.

    What is happening over there in the US? Your 'Health Service' seems determined to conflate a serious neuro-immune disease that kills people with mild depression, in imitation of the worst of what we have here in the UK, and in an effort to bury a problem. Otherwise, why would they exclude the knowledge of the confirmed experts in the field of M.E...
    Lord help us.
     
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  16. Ren

    Ren Primum Non Nocere

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    Well-written and informative - Thank you! I have to say that in regard to the sources at hand, whenever I see "redefine", I think "re-education" with all its negative implications. And though the following is likely to have been discussed elsewhere, I'd like to ask what thoughts there are regarding appealing to organizations (such as CCHR?), which act as a watchdog for abuses within psychiatry.

    I honestly don't know a lot about this area, but a psychiatry lobby (as currently exists) which seeks to suppress biomedical science and deny patients proper treatment should be held legally and morally accountable for scientific/research fraud, medical abuse, and human rights abuses.

    I'm new here and can repost such an idea in the forum as I learn to navigate within the site. But given the weight and urgency of the present situation, I wanted to go ahead and make such a proposal in case it inspired anyone else.
     
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  17. Iquitos

    Iquitos Senior Member

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    From Nield's post re: IOM process, Stage 2:

    "A committee is not finally approved until a thorough balance and conflict-of-interest discussion is held at the first meeting, and any issues raised in that discussion or by the public are investigated and addressed."

    "... any issues raised in that discussion OR BY THE PUBLIC are investigated and addressed."

    If this process goes forward, this is where we need to focus our efforts, as we are now doing.

    Do we have any way of knowing WHEN this FIRST MEETING is to be held? Or are they going to slip that past the PUBLIC that has already stated it has ISSUES that need to be addressed.
     
  18. alex3619

    alex3619 Senior Member

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    We need to be prepared in advance. The time window may be too short for a considered response. Just joking, but I wouldn't be surprised if it opens at 5 pm right before a long weekend, and ends at 6am as the weekend finishes. Realistically though we might only have a week to respond. Better to be prepared.

    Investigation and addressing public issues can be a smokescreen though ... saw that, filed it in the little round filing cabinet on the floor, irrelevant, next issue. How this often works in practice is a formal response along the lines of this issue is not relevant to the enquiry at hand, or this issue will be addressed later in the course of normal investigation.
     
  19. Iquitos

    Iquitos Senior Member

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    Yes, Anthony Hardie, Gulf War Vet testifying before the House Committee on Veteran's Affairs, infers that one or more IOM members have lied, conspired with the funding agency, etc. His testimony and recommendations might provide a template for a petition to Congress, since its clear NIH and CDC and their Trojan horse(s) within patient "organizations" are not going to behave honorably, truthfully or legally.

    What we need is a Congressionally Directed Medical Research Program (CDMRP) for ME. For GWI, it's the only thing that has gone around the VA and it's attempt to dismiss the illness as psychosomatic.

    Anthony Hardie, Gulf War Veteran's comments on IOM, etc.:
    WHAT IS WORKING
    However, there are two bright spots for the treatment of ill Gulf War veterans.
    The GWI CDMRP. As an ill and affected Gulf War veteran, I am strongly supportive of the work being done by the Gulf War Illness Congressionally Directed Medical Research Program (CDMRP). It is very much unlike other VA and DoD efforts, which have been consistently criticized over the last two decades.

    People suffering from the health condition under review, called “consumers,” are fully integrated into the entire CDMRP research proposal review process – a key feature of all of the CDMRP’s. Consumer reviewers are placed on par with the scientist reviewers as equally respected, personally affected advisors, helping to enhance the program’s focus, ensure appropriate impact of funded proposals, and impart the sense of urgency felt by fellow afflicted patients.
    Since the program began with Fiscal Year 2006 funding, I’ve had the honor of serving as a consumer reviewer for the Gulf War Illness CDMRP. I’ve found the program efficient, agile, carefully focused by the Congressional authorizing language, and fully engaged in finding and successfully funding the best, most responsive research proposals aimed at improving the health and lives of veterans afflicted by Gulf War Illness. And I’ve found the staff and contractors to be consistently capable and competent, responsive to the review panel, and integral to the success of the programs.
    It is my understanding from other consumer reviewers that the same holds true for other CDMRP research programs.
    And, as a consumer reviewer since the program began, I’ve also had the privilege of reviewing virtually all of the hundreds of pre- and full proposals in the history of the program, which has imparted a unique perspective.

    And he says:
    RECOMMENDED LEGISLATION
    VA staff must be forced by law to seek out, foster, and find the best Gulf War Illness treatment research aimed at improving the health and lives of those whose health has been impacted by their wartime exposures. To that and related ends, Congress should develop and pass legislation that includes:
    1) A provision making it a crime punishable by federal imprisonment for a government employee or contractor to attempt to manipulate an IOM report ordered by a government agency, or for an IOM employee or member to conspire with a government employee or contractor for the purpose of manipulating a report.
    ************
    This is what should have happened to the CDC's villains when they diverted Congressionally mandated funds for CFS research to "more important" diseases, like measles, and then put another Trojan horse, Bill Reeves, in place to continue the abuse. Those guys should have lost their jobs and their pensions and been blacklisted from Federal jobs, paid a fine and put on probation, but the good 'ole boys just gave them a slap on the wrist, a wink and a nod, and moved the criminals sideways instead of out.
     
  20. alex3619

    alex3619 Senior Member

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