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The Nightmare Scenario - IOM Case Definition Contract Terrifies ME/CFS Advocates

Discussion in 'Phoenix Rising Articles' started by Mark, Oct 28, 2013.

  1. Nielk

    Nielk

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    Queens, NY
    Thanks for signing and for sharing!
  2. caledonia

    caledonia

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    Cincinnati, OH, USA
    OMG it's a huge deal over here. They're just rolling in a national health care system where everyone is required to sign up or else, and the website to sign up for it has been crashed for weeks. https://www.healthcare.gov/

    Sebellius' head could roll over this - yep - the same Sebellius we're dealing with for our IOM issue.
    Valentijn and aimossy like this.
  3. Firestormm

    Firestormm Guest

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    Cornwall England
    The website seems to be working..........?

    I do realise that healtcare reforms are a big deal in the US. I don't live in a cave really. I just didn't know what website you were referring to :)
    aimossy likes this.
  4. leela

    leela Slow But Hopeful

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    Couchland, USA
    The website has been borked since its rollout at the beginning of this month.
    I guess it hangs, or takes people in infernal circular dialogues.
    Valentijn and aimossy like this.
  5. Delia

    Delia Senior Member

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    Iowa
    On the contrary! :)

    This is the right time to pressure Democratic Senators Tom Harkin and Patty Murray on the HHS subcommittee to put pressure on Sibellius to cancel the IOM contract before we start hitting the media. It's already on ABCnews.com, in with a video abd article on the canary project.

    I have posted their contact info earlier. I will go get that and put it in my signature.

    Dems do NOT want more bad things out about Sebellius. They don't want more scandal and we are preparing to go public with this.

    Below is my post from the other day:

    [​IMG]


    Call and ask for the staffer who covers the HHS:

    (Also: you can contact their offices as a citizen of the US you don't have to live in Iowa. This is a common misunderstanding. You can contact these people if you live in other countries too., if the action affects you and it's not a Foriegn Policy issue. and this isn't. :)

    The reason for Harkin and Murray is because they are top Democrats and the only ones on HHS. We need them to worry about the fact that we are going public on a big way against Sebellius, which Dems DON'T want as a reappointment process will muck up the works for months and months.

    Here's what to say on you follow up phone (or fax or email if you, like me can't talk on the phone well anymore):

    "Thank you Senator __________


    MEcfs Patients and their allies are presently preparing a media campaign against Secretary Sebellius and The IOM contract, the unnecessary taxpayer waste, Sebellius's documented unsavory actions, her inexplicably ignoring the experts and patients on this matter.


    We will also be bringing public attention to the IOM's abysmal treatment Gulf War Veterans.

    The media campaign and resistance efforts to the IOM contract is ready to go, if our efforts with you and Senator Harkin fail to make headway in convincing Sebellius to abandon and cancel the contract that is not in the best interests of the patients.

    We are working on a two week window to give you time to talk to the Secretary.

    Thank you."

    Name




    The point is-they don't want more fuel to her fire and want to avoid a resignation. Or any more dirt on

    Senator Patty Murray 202-224-2621
    DC Fax: 202-224-0238
    Contact Senator Murray:http://www.murray.senate.gov/public/index.cfm/contactme...See More
    Contact Me - United States Senator Patty Murray
    www.murray.senate.gov
    If you need help with an immigration issue, veteran benefits, social security benefits, etc. or a government agency (INS, VA, SSA), please go to our Privacy Release Form. NOTE - because of the Privacy Act of 1974, my office must have a written request with a signature in order to assist constituents...


    Senator Tom Harkin Contact Senator Harkin:http://www.harkin.senate.gov/contact_opinion.cfm
    WWW Homepage: http://www.harkin.senate.gov/
    Twitter: @SenatorHarkin
    [​IMG]Senator Tom Harkin
    I am a United States Senator from Iowa, currently serving my fifth term. During my time in the Senate, I have earned a reputation for giving a voice to those too often overlooked in Washington: working families, women, people with disabilities, children, students, seniors, family farmers, and small...
    Last edited: Oct 31, 2013
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  6. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    So true, what has happened in the past and the fact this illness is so complex, shows percisely why ALL the ones on the panel NEED to be experts in ME/CFS.

    For that panel to be sure a good one doing the right things for us, we also need all aspects of ME/CFS covered, well as many as possible as there are sooo many (only one psych or behaviour person is needed on an unbiased panel, to allow room for our experts in other areas to be on the panel and I'd bet my panties that they would put more then one psych on that panel.. putting biased on this area and ignoring other areas which should of been represented).

    Whenever I think of Dr Ungers excuse of why the CCC isnt used, I think of just how much that show and proves that ME/CFS (ME and CFS, not lumping them together) needs to become a proper speciality areas in which specialists of a certain field are actually properly trained in eg Neurologists, endrocrines for ME patients (like what happens with other serious complex illnesses, GPs are not expected to be having to treat other complex serious illness so why us?). This is where the problem actually lies.

    Hiding the complexities of a disease (as those like DR Urger seem to support by lack of support of the CCC as its too complex), doesnt make the disease complexities go away... all it does then is leave them ignored.
    .........................

    When I read the PANDORA link (which I was very glad to read and hear what they had to say.. they are in a difficult position there I think). Quite a few things stood out to me. One being that the GWS advocates were saying that there needed to be more neuroligists, endocrinologists, immunologists and clinicitains who specialist in GWS on the OMI committee.

    The comment in PANDORAS statement "since then IOM added another neurologist to the commitee "(which sounded like this was supposed to be a good thing). I personally dont see that as a good thing at all but rather that adding just ONE PERSON more, when they are being told that all those other things were being needed for better balance. To add in of ONE more neuroloigst (when more of the rest were needed too) sounds like just a token add in to get the advocates to back off. They obviously werent listened to about what was really needed to get balance there. Why would we get listened to any more then they did?

    The part in PANDORAs statement that the OMI contract was legally binding so had to go ahead.. ummm any contract which is shown to be very wrong and shouldnt have been done, can be broken even legally binding ones. Sure there would probably be a penalty eg compensation to be paid out due to a breach of contract but it could be broken and that penality taken (which I'd think would be far less then the money being wasted on the OMI contract).

    It should be a situation of "cut and count your looses" before going any further (and someones head should roll for doing it like it was done.. I personally think it was rushed throu for that very reason.. to try to stop people speaking out). It would teach those in high up places that they need to start truely considering what ME/CFS patients do and dont need do.
    Last edited: Nov 12, 2013
    Nielk likes this.
  7. Hermes

    Hermes

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    Dublin, Ireland
    Dear Mrs. Kathleen Sebelius

    There exist issues of conflict of interest, bias, lack of accuracy and consistency, lack of independence, and public interest issues in relation to IOM and its contract to define ME/CFS.

    Conflict of interest

    IOM itself has a conflict of interest as it is the author and owner of the 5 Reports into GWI below where ME/CFS is extensively mentioned and the IOM’s position on ME/CFS is stated. It’s stated position in these 5 reports creates a conflict of interest, as it failed to include vital biological research findings, some 5,000 papers, and had psychiatric bias in all 5 reports. Further details presented below in synopsis of reports and relevant pages from reports.

    Bias

    IOM failed to look at the biological research and findings into ME/CFS which amount to approximately 5,000 papers in the 5 Reports into GWI below where ME/CFS is extensively mentioned and the IOM’s position on ME/CFS is stated. Yet the IOM quoted the psychiatric papers, some of which had serious scientific and historical flaws and errors. And the IOM recommended psychiatric based treatments. This strongly indicates psychiatric bias in these 5 reports. Further details presented below in synopsis of reports and relevant pages from reports.

    Lack of Accuracy and Consistency

    The lack of accuracy pertains to the ignoring and omitting of important biological research and findings into ME/CFS which amount to approximately 5,000 papers in the 5 Reports into GWI below where ME/CFS is extensively mentioned and the IOM’s position on ME/CFS is stated. The omission of Canadian Criteria 2003, Nightingale Criteria 2007, International Consensus Criteria 2011 point to further lack of accuracy. The “primary research” source in these 5 GWI reports failed to 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. The reluctance and refusal to interview medical doctors who have successfully treated ME/CFS also blocked accuracy in the 5 reports.

    As regards consistency, the IOM’s position on ME/CFS may become inconsistent if it examines, analyses and includes biological scientific facts in the new definition which were not included in the 5 GWI reports.

    Independence

    The IOM selected the committees for these 5 GWI reports below where ME/CFS was extensively mentioned and the position on ME/CFS stated. The IOM oversaw these committees, was in regular communication with them and the IOM had the power to read the final report and recommend amendments or changes in line with scientific and medical facts and public interest issues.
    The continued selection of committee members with obvious psychiatric bias in 5 GWI committees producing 5 reports, all of them with psychiatric bias strongly suggests a pre-conceived position and viewpoints, a lack of independence and a lack of independent thinking. The latter being obvious through the omission of biological scientific and medical facts.

    The Public Interest

    There are matters here of great concern to the health and safety of the American people. This is outlined on the following web site detailing those people who have died of ME/CFS and it’s health complications - http://www.ncf-net.org/memorial.htm The neglect of patients through the use of ineffective, useless and harmful psychological treatments and the stigma and prejudice surrounding this in societies has been a major contributor to these deaths and years of suffering.

    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

    Yours Sincerely
    David Egan.
    ME/CFS advocates in USA and European Union
    Campaign for an ME Clinic www.me-ireland.com
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