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CFIDS Association presentation at IoM

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Jan 28, 2014.

  1. Nielk




    barbc56 likes this.
  2. Nielk


    Carol Head states:

    my bold

    This is the public statement from new president and CEO of CAA. She states:" We’re primarily a research organization". She doesn't say we are an organization representing patients. She doesn't say we are an advocacy organization.
    Valentijn and justinreilly like this.
  3. Bob


    England (south coast)
    My understanding it that they've changed their remit, and now consider themselves a research organisation rather than a patient advocacy organisation. (But I can't remember where I read this.) Considering that so many US ME patients have such a negative opinion of them, perhaps it's not such a bad thing if they focus on research?
    Last edited: Jan 28, 2014
    Valentijn, Nielk and SOC like this.
  4. justinreilly

    justinreilly Senior Member

    NYC (& RI)
    Yes, they keep saying they changed to be 'laser-focused on research,' which was an easy way to get patients' off their backs for past advocacy blunders and current failure to advocate. But they want to have it both ways, coming in and advocating against patients' interests in the IoM situation.

    I left the following comment on their blog. Let's see how many days or weeks it takes to appear.

    "So the CAA BioBank is now using CCC? Which is what patients have been pushing for and CAA resisting. Pls give details (such as when this started and whether now all samples only taken from CCC patients). Thanks.

    To provide crucial context you might have added that HHS, you (CAA) and the Wessley school are the reasons why ME has been criminally neglected and the science intentionally distorted."
    RustyJ likes this.
  5. barbc56

    barbc56 Senior Member

    I don't understand why some are against the CAA becoming a research program nor the animosity towards the CAA.

    I will do a search here but if someone can point to information. I was impressed with their presentation but have found myself impressed with many others.

    But maybe I am missing the history?

    I find the language by some towards the CAA rather rude when it can be stated in a much more appropriate way to make a point whether there is substance to the critisim or not.

    It's just not productive. I understand the anger towards many issues which concern us as I feel it too. But if we want credibility and to be taken seriously then we need to take the high road and act professionally. In the long run it will lead to better progress.

    Last edited: Jan 29, 2014
    Sparrow likes this.
  6. Nielk


    Carol Head, the current president and CEO of CAA stated in her presentation to the IoM that they are primarily a research organization. I believe this is a true statement and I am happy that they are currently concentrating on much needed research. We all know how badly that is needed. The difficulty that many people have is that they still act as if they are an advocacy organization; which they are not.

    They have no membership. They are more of a scientific organization with a large scientific advisory committee. They were invited to the IoM meeting as a patient organization representative - which they are not. In what way are they different than WPI, OMI, Simmaron and others? Would you expect WPI to address a public committee as a patient representative?

    In their presentation, they talk about patients who have commented on their survey. These patients are not members of CFIDS. They simply answered a survey posted on Facebook.

    Why do I, and many others care about this misrepresentation? It's because when they publicly make statements, the misguided understanding is that they speak for the majority of the patients - which is not the truth.

    When Carol stated in her comment: "The lack of uniformly-accepted clinical diagnostic criteria is one of many reasons for the slow progress against this illness". she was certainly not speaking for the majority of patients. The problem is not that there the lack of uniformly-accepted clinical diagnostic criteria. The problem is that HHS refuses to accept/adopt the criteria which experts have adopted; CCC.

    When the CAA claims to be the largest organization representing ME/CFS patients, the world believes them....and they accept the statements they make as if it is the voice of the majority of patients. It isn't.

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