1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Give ME the Money
Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
Discuss the article on the Forums.

Poll: IOM Contract

Discussion in 'Institute of Medicine (IOM) Government Contract' started by asleep, Oct 17, 2013.

?

What is your opinion of the IOM contract?

  1. I support and welcome the IOM contract.

    0 vote(s)
    0.0%
  2. I have misgivings but think that patient engagement could secure a good outcome.

    2 vote(s)
    5.3%
  3. I have misgivings/oppose it but don't think it can be stopped. Engagement is the only way forward.

    6 vote(s)
    15.8%
  4. I oppose it and want it stopped, but I don't know how to help.

    12 vote(s)
    31.6%
  5. I oppose it and want it stopped, and I'm working to make it happen.

    17 vote(s)
    44.7%
  6. I don't care/I don't think this is important.

    1 vote(s)
    2.6%
  1. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,175
    NYC (& RI)
    Delia
    Four great people for your friend to talk to would be patient Bob Miller, his wife Courtney Miller (both of whom are on PR I believe) and Llewellyn King of White House Chronicles, who is a longtime journalist who is a friend of a patient and has written and videod a lot in the past couple of years on ME. And Hillary Johnson.
     
    Delia likes this.
  2. Delia

    Delia Senior Member

    Messages:
    137
    Likes:
    231
    Iowa
    Great! I will let her know!

     
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,175
    NYC (& RI)
  4. Ember

    Ember Senior Member

    Messages:
    1,749
    Likes:
    1,846
    In the development of the CCC, Health Canada established the "Terms of Reference" and selected the Expert Consensus Panel. The initiative for and development of the ICC, on the other hand, was done outside any organization without any financial or other assistance or sponsorship.
     
  5. alex3619

    alex3619 Senior Member

    Messages:
    7,693
    Likes:
    12,553
    Logan, Queensland, Australia
    Ember, I am unaware of the details of how Health Canada was involved in setting terms of reference for the CCC. Is it possible this could be used as an example of a good model to follow, to compare it to what the IOM does?
     
    Delia likes this.
  6. Ember

    Ember Senior Member

    Messages:
    1,749
    Likes:
    1,846
    According to Marj van de Sande, the Terms of Reference for the Canadian Consensus Panel established by Health Canada required that it consist of at least 10 members, 4 of whom could come from outside Canada. I'm not aware that the document itself was ever published, and given that work on the CCC began in 1999, it must be well over a decade old now. Do you think that it would be worthwhile to find out more?
     
  7. alex3619

    alex3619 Senior Member

    Messages:
    7,693
    Likes:
    12,553
    Logan, Queensland, Australia
    Ember, if this is the only example of terms of reference for a panel that achieved a good result, then we probably need to look at it. Most government documents get archived, usually with backups. This could be a valuable resource. For one thing it will provide a benchmark to compare the IOM against. For another it can assist us with understanding how these outcomes are achieved. Its not all about the experts, its also about the rules they have to follow. That has been long known by those creating committees and panels, and is a good and less visible way to sway the outcome. We just do not know the rules for the IOM, but we can infer them from the Gulf War report and other documents.

    Too often when out of scrutiny "evidence-based' processes get turned into a play by the numbers formula. Real thought and complex analysis are excluded by the huge volumes of material. They simply do not have the time, and they are not researchers - they have to accept what studies say. As such the outcomes are railroaded down a specific track by the constraints they have to follow. We also have a good idea where that track leads.
     
    justinreilly and Delia like this.
  8. Ember

    Ember Senior Member

    Messages:
    1,749
    Likes:
    1,846
    The “Terms of Reference” were established by Health Canada after the draft clinical definition had been written. Health Canada selected the Expert Consensus Panel for ME/CFS with at least one member having been nominated by each of five stakeholder groups: government, universities, clinicians, industry, and advocacy. Panel members had to be practicing MDs actively treating and/or diagnosing ME/CFS, or MDs or Ph Ds involved in clinical research of the illness. The members of the panel had autonomy over their consensus document.

    A description of Health Canada's “Terms of Reference” is included in the ME/CFS Guidelines under the heading, Development of the Canadian Consensus Document:
     
  9. alex3619

    alex3619 Senior Member

    Messages:
    7,693
    Likes:
    12,553
    Logan, Queensland, Australia
    Unfortunately Ember this is only an outline. Later on I might go looking for more detail. I guess we might even have to contact one or more of those who developed the CCC to find out. If they had a broad brief, and good experts, then the outcome can work out fine. The CCC shows that. What I want to know goes right down to standards of evidence: how were individual studies evaluated, and what influence did this have on the final outcome. Was it that detailed, that rigorous, or was it more organic?

    The modern push for evidence-based medicine has very good reasons to go ahead, but in their haste and the failure to look back at old medical studies properly its becoming a travesty of good process. The example that comes to mind for me is this: not one single psychogenic illness has objective evidence of its existence. The outcomes from CBT/GET were commented on in a Cochrane review, but the extreme subjectivity and potential for bias was ignored. This is what science-based medicine is at least claiming to address. None of the psychogenic hypotheses are scientific. None. Some of the treatment methods could be subjected to scientific analysis, but the PACE trial failed to do this, and it looks like that's off the table for now.
     
    Delia likes this.
  10. Ember

    Ember Senior Member

    Messages:
    1,749
    Likes:
    1,846
    I don't believe that you're going to find more detail.
     
  11. WillowJ

    WillowJ Senior Member

    Messages:
    3,138
    Likes:
    2,828
    WA, USA
    a search on PubMed for "definition" is useful for finding examples from any diseases, but i haven't had the focus to read the full documents when the full text has been available.
     
  12. Chris

    Chris Senior Member

    Messages:
    578
    Likes:
    176
    Victoria, BC
    A couple of points. @Sushi-I did write to three of the signers--got one friendly reply, one very succinct "thanks," and silence from the third. I think now that seeming to invite or even welcome patient approval might in some powerful quarters hinder more than help our researchers. I think writing letters to Sebelius et al, and contacting government figures (as a Canadian that is something I cannot do) would be more helpful. I am also one who wrote in to IOM with a list of nominees, with brief comments on the suitability and qualifications of each--all except one (Julia Newton) taken from the list of signers. I don't think this will have much effect on the IOM, but at least it shows support for those who signed.

    I take a very, very dark view of this affair. In conjunction with Dr. Unger's remark that " GE is non-negotiable" (this is a scientist speaking??) I strongly suspect that the insurance lobby ( DSM-V even more than disability) has been successful in invading heavily into many governmental institutions, and the NIH and the CDC, despite moments of apparent forward movement, have given way. The CAA seems to be playing a very dubious game. We desperately need a powerful independent voice. Chris
     
    justinreilly, Delia and Sushi like this.
  13. Ember

    Ember Senior Member

    Messages:
    1,749
    Likes:
    1,846
    "Twenty Years and Counting" gives instructions for international members of the community:
    Urgent ME Advocacy Action: Ask Congress and the President to Cancel IOM Contract and Adopt CCC!
     
    Delia likes this.
  14. WillowJ

    WillowJ Senior Member

    Messages:
    3,138
    Likes:
    2,828
    WA, USA
    Sorry, it's a bit confusing. Jennie posted about canoes here and here (and she listed CAA's opinion [the CFIDS Association] with the others, which may be interesting but doesn't influence me, e.g.):
    Jeanette complained about Jennie's canoe analogy and made one of here own here.

    Jennie was on the CAA board for a short time, but is not now.

    My post about CAA was not directed to you. Many people have problems with CAA for various reasons, the latest being that letter from CAA asking if the 35 experts wanted to take back their signatures from the position paper stating that CCC was the agreed consensus definition for clinical and research use and the experts should be allowed to make decisions about the disease.
     
    Delia likes this.
  15. WillowJ

    WillowJ Senior Member

    Messages:
    3,138
    Likes:
    2,828
    WA, USA
    Just wanted to say, I'm unhappy with CAA's stance on the letters, but I didn't mean to reflect that on Jennie--sorry if it appeared that way. I respect Jennie.
     
    Delia likes this.

See more popular forum discussions.

Share This Page