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International experts speak out against the IOM contract to determine clinical diagnostic criteria

Discussion in 'Phoenix Rising Articles' started by Firestormm, Sep 24, 2013.

  1. Nielk

    Nielk

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    Queens, NY
    I think that many of you might think that how is this contract with IOM going to affect me? If it follows the course of GWI, it will find that ME/CFS fits under the same umbrella as GWI and should be renamed Chronic Multisymptom Illness too or something like it. They will explain that most likely it is the same or similar to PTSD and will advise for clinicians to treat it the same way. They will recommend CBT/GET and/or antidepressants.

    Part of the contract calls for disseminating this information to clinicians all over the country. Every doctor in this country will have an official stamp of approval to treat us as psychiatric patients.

    In addition, research funding going forwards will only be given to studies with that in mind.

    This is already happening; it will only reinforce it and make it much worse.

    Why it is that Ian Lipkin’s grant proposal for further studies has been denied? He basically told us at the CDC call that he does not have the funds to continue his research. He (with CDC’s Unger on the line) called for patient demonstration like the act-up of aids patients in the 80’s.


    Are we willing to just sit by and let this go on?
    beaker and Kati like this.
  2. Andrew

    Andrew Senior Member

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    Los Angeles, USA
    I found what appears to be a quote regarding what action was supposed to be taken regarding the ME/CFS definition. Does anyone have the source that might contain this? Here's the quote: “promptly convene (by 12/31/12 or as soon as possible thereafter) at least one stakeholders’ (ME/CFS experts, patients, advocates) workshop in consultation with CFSAC members to reach a consensus for a case definition useful for research, diagnosis and treatment of ME/CFS beginning with the 2003 Canadian Consensus Definition for discussion purposes”.

    If this is a correct quote, it demonstrates just how underhanded the HHS is. They have not convened something made up of ME/CFS experts, patients, and advocates in consultation with CFSAC. They have pushed those parties aside and gone to an organization that is none of the above. It in no way meets the request, and to pretend that it does is an insult to us all.
    beaker and Valentijn like this.
  3. Nielk

    Nielk

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    Queens, NY
    It's from the CFSAC 10/12 recommendation:

    CFSAC recommends:
    • that you will promptly convene (by 12/31/12 or as soon as possible thereafter) at least
    one stakeholders’ (ME/CFS experts, patients, advocates) workshop in consultation with
    CFSAC members to reach a consensus for a case definition useful for research, diagnosis
    and treatment of ME/CFS beginning with the 2003 Canadian Consensus Definition for
    discussion purposes. (10/12)

    In my article here, I point out how deviously they performed a bait and switch game on us!
    justinreilly, beaker and Valentijn like this.
  4. RUkiddingME

    RUkiddingME Senior Member

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    Canada
    Petition signed. http://www.thepetitionsite.com/898/238/310/thank-you-to-mecfs-experts/
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  5. Hermes

    Hermes

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    Dublin, Ireland
    5 Reports by IOM mentioning ME/CFS and stating their position on ME/CFS from 2000 – 2013

    I have only included a brief synopsis of each report and links to relevant pages from the report


    Gulf War and Health (2013)

    Reeves paper cited and contains several important flaws, including a prevalence figure of 2.54%. Bias in favour of psychiatry in terms of listed and cited research into ME/CFS in the GWI report . Page 22 states that ME/CFS is a somatoform disorder, which is a vague psychiatric illness. Page 97 mentions somatic symptoms. The “primary research” source not included. Primary research should have been included and should have contained findings of immune dysfunctions, infections of blood, intestines, nervous system and muscles, toxins in the body, HPA axis dysfunctions, autonomic dysfunctions, mitochondria dysfunctions, exercise abnormalities, brain and neurological lesions, inflammation and dysfunctions. CFS used out of context in the GWI report and misused to represent every type of known and unknown illness in GWI soldiers. The psychiatric based NICE guidelines were included in the definition along with the outdated Fukuda definition which is vague and imprecise, but the Canadian Criteria (2003) and Nightingale Critera (2007) and International Consensus Criteria (2011) were ignored and excluded. Psychiatric treatments such as CBT, GET and psychiatric drugs were recommended for ME/CFS. ME/CFS biological research papers ignored. Medical doctors with experience in treating ME/CFS patients ignored. Biological medical diagnostics and treatments ignored.

    http://books.nap.edu/openbook.php?record_id=13539&page=22

    http://books.nap.edu/openbook.php?record_id=13539&page=97

    http://books.nap.edu/openbook.php?record_id=13539&page=98

    http://books.nap.edu/openbook.php?record_id=13539&page=99

    http://books.nap.edu/openbook.php?record_id=13539&page=100

    http://www.nap.edu/openbook.php?record_id=13539&page=120


    Gulf War and Health (2010)

    Wessely cited and Straus cited. Wessely’s 1998 paper contains several important errors.Bias in favour of psychiatry in terms of listed and cited research into ME/CFS in the GWI report . The “primary research” source did not include findings of immune dysfunctions, infections of blood, intestines, nervous system and muscles, toxins in the body, HPA axis dysfunctions, autonomic dysfunctions, mitochondria dysfunctions, exercise abnormalities, brain and neurological lesions, inflammation and dysfunctions. CFS used out of context in the GWI report and misused to represent every type of known and unknown illness in GWI soldiers. ME/CFS biological research papers ignored. Medical doctors with experience in treating ME/CFS patients ignored. Biological medical diagnostics and treatments ignored. Canadian Criteria (2003) ignored.

    http://www.nap.edu/openbook.php?record_id=12835&page=210

    http://www.nap.edu/openbook.php?record_id=12835&page=211

    http://www.nap.edu/openbook.php?record_id=12835&page=212

    http://www.nap.edu/openbook.php?record_id=12835&page=213

    http://www.nap.edu/openbook.php?record_id=12835&page=214


    Gulf War and Health (2008)

    Wessely cited and Straus cited. Wessely cited and Straus cited. Wesselys’ 1998 paper contains several important errors. Bias in favour of psychiatry in terms of listed and cited research into ME/CFS in the GWI report . Telephone and mail shots used as “primary research” source. The “primary research” source did not include findings of immune dysfunctions, infections of blood, intestines, nervous system and muscles, toxins in the body, HPA axis dysfunctions, autonomic dysfunctions, mitochondria dysfunctions, exercise abnormalities, brain and neurological lesions, inflammation and dysfunctions. CFS used out of context in the GWI report and misused to represent every type of known and unknown illness in GWI soldiers. ME/CFS biological research papers ignored. Medical doctors with experience in treating ME/CFS patients ignored. Biological medical diagnostics and treatments ignored. Canadian Criteria (2003) ignored.

    http://www.nap.edu/openbook.php?record_id=11922&page=174

    http://www.nap.edu/openbook.php?record_id=11922&page=175

    http://www.nap.edu/openbook.php?record_id=11922&page=176

    http://www.nap.edu/openbook.php?record_id=11922&page=177

    http://www.nap.edu/openbook.php?record_id=11922&page=178


    Gulf War and Health (2006)

    Wessely cited and Straus cited. Wesselys’ 1998 paper contains several important errors. Bias in favour of psychiatry in terms of listed and cited research into ME/CFS in the GWI report . The “primary research” source did not include findings of immune dysfunctions, infections of blood, intestines, nervous system and muscles, toxins in the body, HPA axis dysfunctions, autonomic dysfunctions, mitochondria dysfunctions, exercise abnormalities, brain and neurological lesions, inflammation and dysfunctions. CFS used out of context in the GWI report and misused to represent every type of known and unknown illness in GWI soldiers. ME/CFS biological research papers ignored. Medical doctors with experience in treating ME/CFS patients ignored. Biological medical diagnostics and treatments ignored. Canadian Criteria (2003) ignored.

    http://www.nap.edu/openbook.php?record_id=11729&page=161

    http://www.nap.edu/openbook.php?record_id=11729&page=1612

    http://www.nap.edu/openbook.php?record_id=11729&page=163

    http://www.nap.edu/openbook.php?record_id=11729&page=164

    http://www.nap.edu/openbook.php?record_id=11729&page=165


    Gulf War and Health: Volume 1. Depleted Uranium, Pyridostigmine Bromide, Sarin, and Vaccines (2000)

    Wessely cited and Straus cited. Wesselys’ 1998 paper contains several important errors. ME/CFS assumed to be a somatoform disorder.

    http://www.nap.edu/openbook.php?record_id=9953&page=343

    Quotation from report http://www.nap.edu/openbook.php?record_id=9953&page=343
    “ The recognition of a new disease is far from straightforward (Wegman et al., 1997). The simplest statement is that it is a process (Kety, 1974), often taking years. The purpose of the process is to demonstrate that patients are affected by a unique clinical entity distinct from all other established clinical diagnoses. The individual “steps” for gathering and interpreting evidence are not clear-cut. Evidence from biomedical research plays a prominent, but not necessarily exclusive, role in defining and classifying a new disease. Social factors, including culture and economics, influence the recognition, classification, and definition of a new disease (Rosenberg, 1988; Aronowitz, 1998; Wessely et al., 1998).”

    This is contradicted by the way that ME/CFS and Fibromyalgia has been recognised and classified by some psychiatrists. Recognising and classifying a new disease is very straightforward for some psychiatrists, they just term it a psychiatric illness and in some cases give it a new definition and classification to suit their own purposes. They even create a competing definition of their own in order to take over an illness. And they conveniently ignore all the biological and biomedical evidence which prove its not a psychiatric illness. Several physical illnesses were wrongly classified as psychiatric in the past, but have since been proved to be physical and biological illnesses not psychiatric.

    http://www.nap.edu/openbook.php?record_id=9953&page=350

    http://www.nap.edu/openbook.php?record_id=9953&page=354

    http://www.nap.edu/openbook.php?record_id=9953&page=355

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