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IOM List of Provisional Committee Members has been posted 3 Dec 2013

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Denise, Dec 3, 2013.

  1. Esther12

    Esther12 Senior Member

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    I've never really understood what good for patients could come out of the IOM process, and that has made me deeply cynical and concerned about the whole process. I wonder if I was wrong to be thinking of it in scientific/medical terms though, and maybe the IOM could be like a useful brand to attach to a CFS criteria in order to make funding for CFS research seem more respectable? Maybe the IOM could be a 'good' thing, even if it just leads to another criteria which is marginally worse that what we already have (and none of them are great)?

    I don't want to get carried away in positivity here, and I certainly think that it's important that more work is put into understanding the backgrounds of the people on this committee, as well as ongoing oversight of their work, remit, attention to patient concerns, etc... but those names do not look like a stitch up to me.
  2. WillowJ

    WillowJ Senior Member

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    like @alex3619 , the rules they will be operating under are perhaps even more important than the committee makeup. Even if more people than not already are, or become, convinced it's an important and biomedical disease, if the rules say they have to throw out everything that is not a huge trail replicated x number of times, or an RCT (EMB was usually intended for treatment trials, not for definitions--as Alex said, this is a Category Error), they will end up with next to nothing.

    maybe PACE, which they might or might be allowed to grade as low quality, and maybe a handful of other studies.(ETA: make that, "might or might not")

    In the end perhaps the most honest thing this effort could do would be to come to no conclusion. But if they mail THAT to everybody, that does not bode well.

    This is why they should FIRST fund research, and ONLY THEN engage in more redefinition efforts, especially if they want to rely on hard science more than clinical expertise.

    Other diseases get clinical expertise as initial definitions, then science, then refine the clinical definitions but somehow, that is "not good enough" in our case. We "have to prove" the unproveable.

    Because the result will be nothing and then they can go on blythely discriminating against us. But now they can claim it is "evidence-based" and put a NAS seal on it.

    We still need to see the contract. If they cannot show the contract, or the contract is poor, it has to be canceled.
    Last edited: Dec 3, 2013
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  3. WillowJ

    WillowJ Senior Member

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    I do think you're right to be cynical.

    The possibility that it could be good is remote, but it works like this:

    If, and only if, the rules of evidence which they will be required to follow are good, and the committee is decent (some of the people look pretty iffy to me--so far I have found one who has no reason to be on there at all except that they work at IOM and apparently want to be there), and if they turned out with something actually good...

    they will send whatever they come up with to everyone (in the US), and again in the unlikely circumstance that it was good, this would bring much-needed awareness, and doctors would then 1) have heard of it and 2) know how to diagnose it.

    This however seems a very remote possibility.

    I don't really think doctors would accept another rubbishy criteria as "here is a real illness that I should pay attention to". Even if it came from IOM.
    justinreilly and Esther12 like this.
  4. Denise

    Denise Senior Member

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    I totally agree WillowJ (especially with the parts in bold --- my emphasis)!
    WillowJ likes this.
  5. Esther12

    Esther12 Senior Member

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    Yeah, and we do need more transparency here. The lack of openness also, to me, indicated a failure to recognise that patients should be at the heart of this process, rather than treated as lab rats to be studied by their superiors. Hopefully this attitude is something that those on the committee will reject.

    Hopefully there are going to be people on the committee who really advocate for a fully transparent proces, with room for patient input along the way.

    Personally, I'm quite in favour of having genuine outsiders there so long as they're on the side of patients, and realise what a morally serious task they're undertaking.
    usedtobeperkytina likes this.
  6. WillowJ

    WillowJ Senior Member

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    agreed! :)






    I half agree with you as I mentioned here (Looks like the sort of person we would like to be interested in ME. Still not convinced a definition committee on a tight deadline is the place to start them off...)

    However, my quote that you mentioned above referred to an author of this:
    http://link.springer.com/article/10.1007/s00127-012-0489-6

    Then again, that person publishes a lot on discrimination, so maybe that's why they think they're qualified?
    Last edited: Dec 3, 2013
  7. Esther12

    Esther12 Senior Member

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    Bob and WillowJ like this.
  8. Andrew

    Andrew Senior Member

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  9. Ecoclimber

    Ecoclimber Senior Member

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    There are ME/CFS appointees to the IOM Panel that have past, current and future NIH grants and funding.
  10. Snow Leopard

    Snow Leopard Senior Member

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    It isn't going to be transparent, that has been my main complaint all along - lack of transparency.
  11. alex3619

    alex3619 Senior Member

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    No transparency, no accountability == tyranny.
  12. Nielk

    Nielk

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    That's a great slogan for us, Alex.
    justinreilly likes this.
  13. akrasia

    akrasia Senior Member

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    What the controversy over the contract is able to embody is our relationship to power summed up in what Alex wrote. This has been our condition for decades and derives from radically different readings of the history of the disease.

    The NIH and CDC basically reduced this population to head cases and nuisances that had to be placated in the most contemptuous and minimal way possible.

    Whatever the usefulness of the IOM exercise, if it's not undergirded by a shared good faith, it shouldn't go forward. It would be helpful if the panel articulated just how they see what they are doing and the challenges presented by a marginalized, stigmatized disease, whose very claim on seriousness has been constantly undermined. Who or what do they think they are serving?

    Our advocacy up to now has been constant vigilance and damage control, a horrible waste of our energies and the potential of the government. Damage control may be all we can do in the public sector for the moment until some of the promising science bears fruit and compels explicit change.
    Last edited: Dec 4, 2013
  14. Esther12

    Esther12 Senior Member

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    She co-authored this: http://t.co/boCCW7kPwg

    From: https://twitter.com/knittahknits/status/408066727948218369

    Looks pretty poor to me. Little real engagement with the work psychosocial, or thinking about the role of things like response bias in trials for cognitive and behavioural interventions which do not have objective or blinded outcome measures (sorry - couldn't copy+paste for quotes).

    They do say that it would be good to get more employment data, but they do this in contrast to a measure like CD4 counts, and suggest that a problem with self-report measures is that they could reflect feeling better from doing less rather than recovering, which seems to me to be the least dangerous problem. These points are, in isolation, fine, but they also seem to reflect the sort of priorities that I had initially feared would dominate the IOM process.
  15. alex3619

    alex3619 Senior Member

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    Mulrow has a CBT/GET systematic review at the link posted by @Esther12. This paper is not the worst I have read, but its far from good, and while noting methodological flaws in the CBT/GET RCTs it does not sufficiently highlight those flaws. I may comment again soon as I am rereading the paper - I read it some time ago, but now we need to look at it again.

    This review actually looked at other interventions, including immunoglobulins and cortisol, but concluded the evidence was not strong.

    Its not surprising they didn't find strong evidence for RCT interventions, it basically all comes down to CBT/GET due to their funding and proliferation of papers plus the bias in their methodologies. This is what I mean by evidence based reviews and their rules being important ... we don't have many RCTs, so the evidence under Cochrane guidelines will be heavily weighted toward CBT and GET.

    Yet there are two important caveats that rarely get a mention and we should emphasize. First, Lerner's work has results that are so strong that his research is due to have an evidence ranking upgrade, purely on the strength of the results.

    The second is that there are criteria for evidence downgrades as well. The pathetic results, lack of objective evidence, potential bias and flawed diagnostic criteria should downgrade all RCTs for CBT/GET several rankings at least. Further there are no double blinded studies in psychiatry or exercise intervention, downgrading any RCT in my opinion.

    Further the 2 day CPET research gives strong evidence that harm is being done, which counts as contradictory evidence, and should also warrant a downgrade for GET.

    I am still deeply concerned that people who do psychogenic psychiatry research have no objective evidence any of their diagnoses or hypotheses are valid.
    Last edited: Dec 4, 2013
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  16. alex3619

    alex3619 Senior Member

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    One methodological flaw in the study by Mulrow was very broad inclusion criteria, basically a mirror of what we see in the IOM study. Anything like CFS was acceptable, including Chronic Epstein Barr etc.

    They admit that high heterogeneity between studies meant numerical analysis was not feasible, so they did a qualitative analysis. This downgrades the quality of the review.

    They claim an effort to allow for publication bias, but they failed to allow for inherent methodological bias in CBT etc.

    They used a validity assessment scale for papers, but I am not sure how valid the assessment scale was.

    However some of the caveats in the conclusion are entirely appropriate, including that most studies are limited to patients who can travel, implying a minimum level of health. They also emphasize the need for more objective measures in studies.

    This study is a mixed bag of the good and the bad, and fails to discuss inherent flaws in CBT research, and that CBT for CFS is often based upon an unprovable psychogenic hypothesis, its not CBT as generally practiced.

    PS This is a 2001 review, its hard to judge her current position. Also there appear to be two psych based researchers. Alegria is the other.
    Last edited: Dec 4, 2013
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  17. caledonia

    caledonia

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  18. Sparrow

    Sparrow Senior Member

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    We're going to be facing the problem that from the outside, it looks very much like GET really does have the most evidence of success behind it. It's not easy to see the issues with it unless you've been through it yourself. I suspect that whoever ends up on the panel, that will be by far our biggest challenge. When the time comes, we will need to give them access to some of the articulate and easy-to-grasp critiques of the PACE trials, as well as personal stories about the effects of GET on patients (in a polite, sincere way). ...And hope that it tones down their recommendations even a little.

    I have strong concerns about some of the panel members (including some of the so-called experts) and their pro-exercise bias. I feel like that could be one of the most harmful things to come out of this.

    I would also like to see a better neurologist on the panel. We have a lot of traits in common with a poorly healed concussion, etc., and they might be helpful in recognizing that.
  19. Andrew

    Andrew Senior Member

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    Frankly, this is not better than I expected. It is worse. I expected to see a majority of real experts. We don't have that. Also, I'm not so sure all the "experts" are real experts.

    I saw a clip of Anthony L. Komaroff talking about the how the fatigue name got put onto our illness, along other problems we face. He was actually a participant at the event.. He said they didn't have enough ammo to deal with all the nay-sayers who showed up. What makes you think we have enough ammo now, considering that most of the research is based on a fatigue-centric model.. If a room full of experts can't convince one person (such as Unger), how effective do you think they can be when they are outnumbered. I feel badly for the real experts who are there. And the only solution I see is to get this cancelled.
  20. Nielk

    Nielk

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    They were really very clever in that include a few experts on the panel but, in my opinion this is not enough. With the lack of evidence based good research proving what this disease is all about, the only ones who get it are the clinicians who actually see patients. If this was the make up of an advisory committee, I would not object so much but, since they are being charged to re-define a very complex multi-system disease, this is not acceptable.

    My fear is that many will see a couple of names that they recognize and have the false hope that this panel might actually work. Please, do not be fooled by this.
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