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A Little Poisoning Along the Road to ME/CFS
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The chronological events of the HHS contract with the IOM

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Oct 18, 2013.

  1. Nielk

    Nielk

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    Chronological events:

    October 2012

    CFSAC’s voting members issued a recommendationto the secretary of HHS stating:

    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)’
    August 27, 2013

    HHS announces a sole solicitationwith the Institute of Medicine (OMI) for a study on diagnostic criteria for ME/CFS.

    'Clinicians and medical professionals disagree on many aspects of ME/CFS, ranging from frank disbelief in the illness to confusion about the application of clinical diagnostic criteria. In collaboration with CFSAC ex officio agencies, OASH will request that the IOM develop consensus clinical diagnostic criteria for this disorder. A widely accepted clinical definition and a clear distinction from clinical trials and research case definitions would aid in advancing clinical care, drug development, and basic and translational research for ME/CFS. This study would also demonstrate HHS' commitment and aggressive pursuit of solutions to this poorly-understood and disabling condition.'
    September 4, 2013

    HHS announces; Because of all of the concern from the public surrounding this potential sole source requisition, we have decided to discontinue this request.”September 20, 2013

    The National Alliance for Myalgic Encephalomyelitis sent a letter to HHS showing their opposition to their solicitation of the contract with IOM.

    ‘In defiance of President Obama’s Open Government Initiative, HHS is pursuing the IOM
    contract unilaterally and with disregard for the overwhelming opposition to it from the ME
    community and advice from HHS’s own “Chronic Fatigue Syndrome” Advisory Committee
    (CFSAC). ‘


    September 23, 2013

    HHS, through the CFSAC listserv sends an announcement of their contract with IOM to start their study on clinical diagnostic criteria for ME/CFS.

    ‘We are pleased to announce that the Institute of Medicine (IOM) will begin conducting a study on Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome this month. This study grew out of the 2012 CFSAC recommendation to the Secretary to convene a workshop to “reach a consensus for a case definition useful for research, diagnosis and treatment of ME/CFS.” Because the use of and audience for case definitions for research and clinical care are very different, HHS decided that separate processes were needed to develop them. The NIH is convening an Evidence-based
    Methodology Workshop process that will consider case definitions appropriate for ME/CFS research and the IOM will address the clinical diagnostic portion of the recommendation.’



    The same night a lettersigned by 35 ME/CFS expert clinicians and experts was sent to HHS urging them to follow their lead and adopt the CCC and to cancel the IOM contract.

    ‘We strongly urge the Department of Health and Human Services (HHS) to follow our lead by
    using the CCC as the sole case definition for ME/CFS in all of the Department’s activities
    related to this disease.


    In addition, we strongly urge you to abandon efforts to reach out to groups such as the Institute
    of Medicine (IOM) that lack the needed expertise to develop “clinical diagnostic criteria” for
    ME/CFS. Since the expert ME/CFS scientific and medical community has developed and
    adopted a case definition for research and clinical purposes, this effort is unnecessary and
    would waste scarce taxpayer funds that would be much better directed toward funding research
    on this disease. Worse, this effort threatens to move ME/CFS science backward by engaging
    non-experts in the development of a case definition for a complex disease about which they are
    not knowledgeable.’


    September 25, 2013

    A Letter signed by National Alliance for ME to HHS stating their support for the letter of the 35 experts.

    ‘Heed our respected experts and follow their lead! THEY are the hands-on, lifelong, highly regarded specialists with this disease; government officials and agencies do not have this wealth of experience. The signatories state that they stand ready to work with you - that is an honor and deserves more respect than our taxpayer-funded agencies have shown.’

    September 26, 2013

    PANDORA issued their position paper regarding the contract with IOM.

    ‘Simply, our position is as follows:

    • Only ME/CFS experts have the experience and knowledge to define the disease.
    • A consensus of experts and the medical professional community at large on how to diagnose the disease is greatly needed.
    • The 2003 ME/CFS Clinical Working Case Definition, Diagnostic and Treatment Protocols (also
    called the “Canadian Consensus Criteria” or “CCC”) is far superior to the more commonly used
    1994 International Case Definition (Fukuda) or Oxford definition, but the current state of
    scientific knowledge has shown a clinical definition with biomarkers and treatment subgroups is
    now possible and needed.
    • A definition that tells how to distinguish those with severe functional limitations is needed.
    • Any effort to improve the definition must include replacing the “CFS” moniker.
    • At least three different definitions are needed: a clinical definition, a more narrow research
    definition, and a clinical pediatric definition, and these should be developed together from the
    same initiative.’


    September 28, 2013

    Dr. Lily Chu’s letterto HHS asking to cancel the IOM contract.

    ‘This history is largely why I and other patients, now joined by expert clinicians and researchers, experience a collective shudder of fear and horror when they hear DHHS plans to a) construct a clinical case definition employing professionals unfamiliar with ME/CFS, b) separate from a research case definition, c) at several separate meetings no less. ME/CFS’s past is filled with examples of ineffective and harmful ideas and treatments visited upon patients without listening to their stories nor to those of the clinicians taking care of them. Confusion and harm has already been incurred by applying research based on one definition (e.g. Oxford-based PACE trials) to patients diagnosed with another definition (Fukuda) and by employing a research case definition (Fukuda), without a solid clinical grounding, that focuses on the wrong symptom. Why make that same mistake again?’

    September 30, 2013

    Dr. Lucinda Bateman, who was one of the 35 signers of the experts’ letter to HHS, issued a statementre-thinking her position.

    ‘3. The Statement of Work [everyone should read it] appears thoughtful and informed—much better than I had expected based on early concerns about the contract. We can remain actively engaged in calling for a committee that is empowered, experienced and scientifically grounded. We can respond to the committee’s results. We can regroup if they fail or fall short.
    4. to the best of my knowledge, the contract has been awarded, so we should now do what is in our power to make it as successful as possible. ‘



    Jennie Spotila obtained the Statement of Work(SOW) from HHS for their contract with the IOM.

    ‘This project will enable HHS/NIH to support a study committee to recommend clinical diagnostic criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). This activity is in support of the Chronic Fatigue Syndrome Advisory Committee (CFSAC), a federal advisory committee that reports to the Secretary through the Assistant Secretary for Health.’


    ‘Under a task order against the NIH umbrella contract, the Institute of Medicine (IOM) will:

    1. Conduct a study to identify the evidence for various diagnostic clinical criteria of ME/CFS
    using a process with stakeholder input, including practicing clinicians and patients;


    2. Develop evidence-based clinical diagnostic criteria for ME/CFS for use by clinicians, using a
    consensus-building methodology;


    3. Recommend whether new terminology for ME/CFS should be adopted;

    4. Develop an outreach strategy to disseminate the definition nationwide to health professionals. ‘



    A repeat letter by the National Alliance of ME to HHS - heed our experts letter.

    ‘Paragraph 2: You state, “A group of voting and non-voting members of the committee participated in the development of the Statement of Work.” Please produce for us the Statement of Work in its entirety, with names, departments, and who contributed what. Non-voting members of the CFSAC should not be included in defining a disease when they do not examine patients or participate in direct patient study. Unscientific. ‘

    October 2, 2013

    The CFIDS Association issued a statement of their standing on the issue of the contract with
    IOM.


    ‘We all acknowledge the need for evidence based, broadly accepted clinical and research tools that can accurately include or identify all subsets of the broad heterogeneous group that presents under any case definition of ME/CFS. We feel that the Canadian Clinical Consensus* can be optimized as a clinical case definition by applying a standardized methodology of execution, through validation of criteria, and a nationwide dissemination to health professionals.
    In order to move forward more swiftly and to achieve better understanding, diagnosis and treatments, we must broaden support for ME/CFS research at all levels.’

    ‘Now that the full statement of work is available from HHS, the Association is reviewing it to see how all stakeholders can best engage in the process. Together we must work to ensure the best experts are placed on the committee and that the patients have as strong a voice as possible. Together we must respond to the committee’s results, promising strong opposition if they fall short. Our shared goal is to ensure the IOM contract results in a quality clinical case definition that can be used nationwide and will move things forward.’

    October 8, 2013

    The CFIDS Association issued a “clarification” statement.

    ‘First, I sent an email to my colleagues who signed the letter to Secretary Sebelius asking to adopt the Canadian Consensus Criteria and cancel the IOM contract. There is speculation that I asked them to rescind their signature. I did not ask anyone to rescind their signature or change their mind. I reached out to those I had email addresses for (29 signatories), asking if they still agreed with the letter given the IOM contract was awarded and more information on the scope of work had been provided. I heard from about half of the signatories. Several stood by their signature indicating the money for the contract should go to research. Others didn’t feel an IOM committee would do a good job. And yet others were hopeful that the IOM contract would be productive and effective. It was important to hear this because we value their expertise and opinions. Many look to us for insight, opinion and information. We try to understand all sides of an issue so we can provide the most balanced information and make the most informed decisions.’

    IOM invites some ME/CFS groups to send a list of potential nominees, with a 3 day deadline. (later extended for a week)

    October 14, 2013

    PANDORA issued their new position on the IOM contract.

    ‘We realized that if we do not work to put our experts on the committee, we will create the very thing we are against: non-ME/CFS experts deciding how to define the disease. It will be us to blame then and not the IOM or the government.
    Therefore, we decided to turn in a list of expert nominations. And we have since learned of at least four other organizations that turned in nominations. Does this mean we support the IOM contract? No. We are eager to assist the experts if they independently or through a medical professional organization take the lead in solving the lack of definition consensus in the expert and medical community at large through a workshop, a study or other means. However, we have been told this option is not available and just demanding it without a study or workshop has not and will not work
    .’

    October 16, 2013

    The National CFIDS Foundation issued a stance against the IOM contract.

    ‘The NCF is against the Institute of Medicine and their "efforts". Our government has already proven more than capable of ignoring scientific work with Gulf War Illness and given it a much more obscure name by the IOM just as a CDC committee did with ME decades ago and whose committee members became authors of the first Holmes criteria.’

    October 18. 2013

    Dr. Ellie Stein issues a statement of support of the letter signed by the 35 experts against the IOM contract.

    ‘ I gave my signature but it somehow didn’t get included on the final copy of the letter. We are calling for HHS to follow our lead by using the CCC as the sole case definition for ME/CFS in all of HHS’s activities related to the disease and strongly urged HHS to abandon its plans to contract the Institute of Medicine who has no knowledge or experience with ME/CFS to develop new clinical diagnostic criteria.’

    October 25, 2013

    Pandora sends letter to Dr. Wanda Jones for answers to some questions.

    '1. Can the IoM contract be stopped? If not, why not?
    2. Can the Dept. of HHS endorse the 2003 CCC as patients, many ME/CFS experts and the CFSAC want? If not, why not?
    3. Why did the Dept. of HHS not follow the CFSAC recommendation to host a workshop of ME/CFS experts and instead contracted for the IoM to do a study?
    4. Considering that the Gulf War illness treatment study came back with requiring only two symptoms for diagnosis and that the NICE Guidelines are one of the things considered in the ME/CFS IoM study, what guarantee do the patients and ME/CFS experts have that something more broad, and therefore more harmful, than Fukuda won't be the result?'

    October 26, 2013

    The experts send a new letter to HHS to adopt the CCC now and cancel the IOM contract with 16 new signatures.

    'We strongly urge the Department of Health and Human Services (HHS) to follow our lead by
    using the CCC as the sole case definition for ME/CFS in all of the Department’s activities
    related to this disease.

    In addition, we strongly urge you to abandon efforts to reach out to groups such as the Institute
    of Medicine (IOM) that lack the needed expertise to develop “clinical diagnostic criteria” for
    ME/CFS. Since the expert ME/CFS scientific and medical community has developed and
    adopted a case definition for research and clinical purposes, this effort is unnecessary and
    would waste scarce taxpayer funds that would be much better directed toward funding research
    on this disease. Worse, this effort threatens to move ME/CFS science backward by engaging
    non-experts in the development of a case definition for a complex disease about which they are
    not knowledgeable.'

    October 27, 2013

    The National Alliance of M.E. publishes article - HHS/IOM Contract Can Be Terminated

    “It is in the government’s interest” to not disenfranchise 50 (and counting) of the best medical experts in this field. THEY are the authorities on ME/CFS; they have “strongly urged” HHS to “ABANDON EFFORTS TO REACH OUT TO GROUPS SUCH AS THE INSTITUTE OF MEDICINE (IOM) THAT LACK THE NEEDED EXPERTISE TO DEVELOP ‘CLINICAL DIAGNOSTIC CRITERIA’ FOR ME/CFS.” It is NOT in the government’s interest to disregard this wealth of knowledge.'

    The Institute of Medicine (IoM) unveils their project page for the study to define ME/CFS - They include a link for e-mail sign up.

    October 28

    66 Advocates sign a letter to Secretary Sebelius in support of the 50 experts - http://thoughtsaboutme.com/2013/10/...cretary-sebelius-in-support-of-their-experts/

    November 4, 2013

    Jennie Spotila on her blog OccupyCFS, explains the stages of the IOM process.

    What We Need to Do

    It is important to note that efforts to cancel this study continue. More experts signed on to the letter to HHS on October 26th, increasing the number of signatories to 50. On October 28th,more than 60 advocates sent a letter to HHS in support of those experts. Petitions and letter campaigns continue. In addition, PANDORA submitted a number of questions to Dr. Wanda Jones at HHS, and were told a response would be prepared. Controversy abounds within the advocacy community, and I’ll have more on that soon. But for those who want to follow the IOM study progress and contribute to the process, I suggest the following:



      • Be ready for the provisional slate announcement at the end of November/beginning of December
      • Submit comments on the provisional slate during the twenty day comment period
      • Begin drafting written submissions to the committee

    November 9

    105 additional advocates sign a letter to HHS in support of the experts' letter - http://thoughtsaboutme.com/2013/11/09/overwhelming-growing-support-of-me-experts-by-advocates-in-opposition-to-iom-contract-advocates-open-letter-re-sent-with-additional-signatures/

    November 11

    Call for Investigation by the Inspector General of the IOM's Conflict of Interest With Respect to ME/CFS
    - http://thoughtsaboutme.com/2013/11/...s-conflict-of-interest-with-respect-to-mecfs/
    In this case, the IOM has clearly and unabashedly demonstrated its bias relating to the ME/CFS diagnostic criteria. It did so just earlier this year in its report on Chronic Multisymptom Illness (Gulf War and Health: Treatment for Chronic Multisymptom Illness (“CMI Report”)).

    November 12

    Secretary Sebelius sends a letter in reply to the experts open letter.

    'HHS does not generally develop diagnostic criteria for disease conditions, an IOM study was determined to be the most appropriate response to the recommendation made by the Chronic Fatigue Syndrome Advisory Committee (CFSAC) during its October 2012 meeting.'

    November 15

    HHS sends out a Q & A through the CFSAC listserv
    - http://solvecfs.org/cfsac-responds-to-questions-concering-the-contract-with-the-iom/

    December 3

    The IOM provides the list of 15 provisional panel members for their study defining ME/CFS. There is a 20 day window for public comments.

    To be updated weekly
     
    Last edited: Dec 17, 2013
    Ren, Izola, ahimsa and 10 others like this.
  2. Nielk

    Nielk

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    If I left anything out, please let me know and I'll add it to the list.
     
  3. asleep

    asleep Senior Member

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    justinreilly and Nielk like this.
  4. Ember

    Ember Senior Member

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    I've appreciated too the letters by the National Alliance for Myalgic Encephalomyelitis:
     
    justinreilly likes this.
  5. Nielk

    Nielk

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    justinreilly and Ember like this.
  6. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    NYC (& RI)
    Excellent and sorely needed. Thank you, Gabby!
     
    Nielk likes this.
  7. Nielk

    Nielk

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    I did some more work on improving the chronological events on the list above. Please let me know if I have left anything out.
     
  8. Nielk

    Nielk

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    Updated with Pandora's letter to Wanda Jones and the letter from 50 experts to HHS.
     
  9. Iquitos

    Iquitos Senior Member

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    Colorado
    Where can I, and Delia, find a copy of the letter Suzanne Vernon/CAA sent to Dr. Bateman? We're looking for the quote where Vernon says she's been contacted by a pharma company and some journalists to respond to the original list of 35 experts' letter to HHS/Sibelius.

    I read it either here or one of the blogs, copied a quote from it, and now can't remember where I found it. Delia would like to know.
     
  10. Ember

    Ember Senior Member

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    Leigh Reynolds provided the letter on Research1st:
    Although the letter is addressed to Dr. Batemen, it seems to have been sent to “the remainder of the signatories:"
     
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  11. Iquitos

    Iquitos Senior Member

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    Thank you, Ember!
     
  12. Izola

    Izola Senior Member

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    Nielk: Thank You and all of you whom seemed to (did) do this consolidation and gathering of IOM info overnight. Thank you all enormously.
     
    taniaaust1 and Nielk like this.
  13. Hermes

    Hermes

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    Dublin, Ireland
    The IOM in some difficulty regarding definition of ME/CFS
    Kate Meck, IOM

    Dear David,
    Thank you for your feedback. All IOM reports follow a strict study process and committees are convened in accordance with this conflict of interest policy to ensure reports provide independent, objective advice. If you would like to be added to the listserv to receive updates on the study, such as when the provisional committee is announced, you may sign up for our listserv here: http://iom.edu/Activities/Disease/DiagnosisMyalgicEncephalomyelitisChronicFatigueSyndrome.aspx.

    Best,
    Kate Meck

    David Egan, ME/CFS advocates and organisations

    Dear Kate

    Thanks for your reply. I hope we can work together to resolve this issue. There remain 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.
     
    taniaaust1 and alex3619 like this.
  14. Ren

    Ren Primum Non Nocere

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    Potemkin Village
    ( Wasn't quite sure where to post this: )

    Subject: September Media as Context for the IOM contract

    I have not read/listened to all of the following but thought I would make note of them, should they be of interest to others. I happened upon "What Witchcraft is Facebook" first - and besides its general content, noticed its publication date of 11 September 2013. Huff Po posted a video on this topic as well in September 2013. And searching for chronic fatigue syndrome September 2013, I found a chronic Lyme article in Psychology Today. I haven't searched further.

    (Note: As far as I've skimmed, these articles/video do not name CFS.)

    But since the ME/CFS IOM contract seems to have had little-to-no publicity, despite patient and medical expert outcry (especially in September), I thought it was interesting that the media was writing about conversion disorder and mass hysteria, as well as sharing warnings about straying from CDC recommendations.


    http://www.theatlantic.com/health/archive/2013/09/what-witchcraft-is-facebook/279499/

    "According to Bartholomew, there is 'potential for a far greater or global episode, unless we quickly understand how social media is, for the first time, acting as the primary vector or agent of spread for conversion disorder.' He believes that epidemics spread by social media are 'inevitable' and that 'it's just a matter of time before we see outbreaks that are not just confined to a single school or factory or even region, but covering a disperse geographical area and causing real social and economic harm.'"

    [The article mentions "mass psychogenic illness" ("historically known as mass hysteria") with an embedded link which takes readers to an NIH page that references Robert Bartholomew (above) and his work with Wessley, S. sic. - which links to another NIH link re work by these two and the growing trend of imagined whathaveyou following the 11 September 2001 attacks.]

    "...conversion disorder, which the National Institutes of Health define as a 'mental health condition in which a person has blindness, paralysis, or other nervous system (neurological) symptoms that cannot be explained by medical evaluation.'”

    "More than one year later, a look back at Marge’s story reveals a stirring reality about why MPI could be making a comeback and spreading beyond its usual confines."

    "The illness is thousands of years old, but some of the new modes of transfer are novel. Marge is an embodiment of how an age-old affliction, in which demons in the brain convert and surface in the body, is itself converting and resurfacing once again."

    Other September links: (Edit: I did watch the video and rate it: Boring - don't bother! Do something nice for yourself instead. :) )
    http://live.huffingtonpost.com/r/segment/facebook-salem-witch-trials-mass-/5239fad9fe3444587d0001c8
    http://www.psychologytoday.com/blog...09/don-t-get-ticked-over-chronic-lyme-disease
     
    Last edited: Dec 23, 2013
  15. taniaaust1

    taniaaust1

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    Sth Australia
    umm that is scary if conversion disorder and mass possibly global espisode mass hysteria got more online coverage then ME/CFS IOM. That would show just how bad the battle we are fighting to bring our plight to public is.
     
    Ren likes this.
  16. Soundthealarm21

    Soundthealarm21 Senior Member

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    Dallas, TX
    Does anyone have an update on what is happening with the IOM contract or is it all closed doors?
     
    Wildcat likes this.
  17. Nielk

    Nielk

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    So far there have been 4 meetings. Two of them were completely closed. Two had part of it open to the public with limited public participation.
     
    Soundthealarm21 likes this.
  18. Nielk

    Nielk

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    Queens, NY
    Soundthealarm21 likes this.
  19. Izola

    Izola Senior Member

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    I think we are going to be the "conversion disordered." There is going to be a global witch hunt. It seems to work every time. How does one contend with the finger pointed straight at oneself?
     

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