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!
August 8th - What is the one thing about suffering with severe ME that the world needs to know?
Andrew Gladman brings our coverage of the Understanding & Remembrance Day for Severe ME, airing the voice of patients ...
Discuss the article on the Forums.

Patients to DHHS: Cancel the IOM Contract!

Discussion in 'Phoenix Rising Articles' started by Firestormm, Sep 19, 2013.

  1. WillowJ

    WillowJ Senior Member

    Messages:
    3,139
    Likes:
    2,830
    WA, USA
    Does anybody know what an "NIH Evidence-based Methodology Workshop" is?
     
  2. WillowJ

    WillowJ Senior Member

    Messages:
    3,139
    Likes:
    2,830
    WA, USA
    Good; we should focus on getting people we like into those slots as opposed to grumping that they've included behavioural health.

    Not sure what we can do about NICE.
     
    Bob likes this.
  3. Bob

    Bob

    Messages:
    8,860
    Likes:
    12,453
    South of England
    This must be what Susan Maier outlined at the most recent CFSAC meeting.

    Watch @12:27.

    www.youtube.com/watch?v=cfGa7_kU1bg

     
    WillowJ likes this.
  4. WillowJ

    WillowJ Senior Member

    Messages:
    3,139
    Likes:
    2,830
    WA, USA
    thanks, Bob. Does that mean they will figure out psychobabble is rubbish? Of course, some of our other research is said to be not well designed, either. But hopefully they'll come up with something good? Is that too much to hope for?
     
  5. Ember

    Ember Senior Member

    Messages:
    1,750
    Likes:
    1,849
    So much for the input of Dr. Susan Levine who, together with other CFSAC members and Dr Nancy Klimas, wrote to HHS entreating them to "...only enlist the expert members of our committee and/or other clinicians and researchers well known in the CFS/ME community to provide recommendations towards establishing an ever evolving case definition for this condition.”
    Anyone know any good dirges?:ninja:
     
  6. Roy S

    Roy S former DC ME/CFS lobbyist

    Messages:
    447
    Likes:
    472
    Illinois, USA

    Beethoven's Funeral Cantata on the Death of Emperor Joseph II. Beethoven rocks! (IMHO)

    This brings to mind observing the beginnings in 1991 of what became the Fukuda definition. This is REALLY important. We need our best experts.



    I appreciate everybody's efforts on this.
     
    justinreilly, beaker and Nielk like this.
  7. Roy S

    Roy S former DC ME/CFS lobbyist

    Messages:
    447
    Likes:
    472
    Illinois, USA
  8. Ember

    Ember Senior Member

    Messages:
    1,750
    Likes:
    1,849
  9. Roy S

    Roy S former DC ME/CFS lobbyist

    Messages:
    447
    Likes:
    472
    Illinois, USA
    That's fine with me. I think it deserves it's own thread.
     
    Ember likes this.
  10. Roy S

    Roy S former DC ME/CFS lobbyist

    Messages:
    447
    Likes:
    472
    Illinois, USA
  11. Bob

    Bob

    Messages:
    8,860
    Likes:
    12,453
    South of England
    justinreilly and beaker like this.
  12. Ember

    Ember Senior Member

    Messages:
    1,750
    Likes:
    1,849
    The Statement of Work

    September 30th, 2013
    by Jennie Spotila
     
  13. Bob

    Bob

    Messages:
    8,860
    Likes:
    12,453
    South of England
    A extract from the 'Statement of Work' (SOW) document (my emphasis):

    Let's be clear that 'chronic fatigue' (I assume they mean of unknown etiology) is not an illness but a symptom.
    'Chronic fatigue' is the symptom diagnosed by the most inclusive diagnostic criteria, such as the Oxford criteria.
    (The Oxford criteria only requires 'chronic fatigue', and no other symptoms, for a diagnosis of CFS.)
    The Oxford Criteria is inclusive of patients who experience chronic fatigue with a psychiatric basis.
    'Chronic fatigue' is the symptom that is widely treated with CBT and GET, which are designed to address fear, deconditioning, and behavioural issues.

    The SOW does include a requirement to subgroups, but it doesn't give this requirement much emphasis:
    If the new clinical criteria are to be inclusive of all patients, from ME patients to patients with chronic fatigue, then we'll be back to square one, with possibly an even worse set of criteria than Fukuda.

    The FDA's recent 'The Voice of the Patient' report (well worth a read) places a great emphasis on post-exertional symptom exacerbation or post-exertional collapse (my specific description, not theirs). So to focus on chronic fatigue, instead of post-exertional collapse, shows a lack of joined up thinking in the government bodies.

    Perhaps patients need to clearly state in all our correspondence to HHS:
    "I do not suffer from 'chronic fatigue' and it does not define my illness."
     
    Last edited: Nov 3, 2013
  14. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,692
    Likes:
    10,146
    Amersfoort, Netherlands
    "Chronic Fatigue" is part of the name used by one of the US groups ... it's "Chronic Fatigue and Immune Dysfunction Syndrome" (CFIDS). So it's not "chronic fatigue", and the document is repeating the proper name used by that group.
     
  15. Ember

    Ember Senior Member

    Messages:
    1,750
    Likes:
    1,849

    700 signers. Let's reach 750​

    Created by Patricia C. United States of America​
    To be delivered to: Kathleen Sebelius, Secretary of Health and Human Services, United States of America​
    Posted October 7, 2013​

    We, the undersigned people suffering from Myalgic Encephalomyelitis, along with our families, carers and friends hereby ask Secretary Kathleen Sebelius to cancel the contract HHS signed with the Institute of Medicine (IOM) to develop “clinical diagnostic criteria” for ME/CFS. We further urge Secretary Sebelius to respect the consensus reached by a group of experts supporting the adoption of the Canadian Consensus Criteria (CCC) as the research and clinical case definition for ME/CFS.​

    Why this is important

    Millions of people worldwide suffer from Myalgic Encephalomyelitis (M.E.). For decades, sufferers have been left with no real biomedical research and no effective treatments. Now the HHS is attempting to prolong this time by contracting with the Institute of Medicine (IOM) to redefine the illness. This is unnecessary because experts in the illness, researchers and clinicians alike, have reached a consensus that the Canadian Consensus Criteria (CCC) should be used for both research and clinical purposes. They have sent an Open Letter to Secretary Sebelius expressing their support for the CCC. (See: http://www.mecfsforums.com/wiki/Open_Letter_to_Hon._Kathleen_Sebelius_9/23/2013 ). This HHS contract with IOM would simply be a waste of precious resources.​

     
    beaker, Nielk and RL_sparky like this.
  16. Ember

    Ember Senior Member

    Messages:
    1,750
    Likes:
    1,849
    justinreilly, beaker, Bob and 2 others like this.
  17. Ember

    Ember Senior Member

    Messages:
    1,750
    Likes:
    1,849
    justinreilly and beaker like this.
  18. Ember

    Ember Senior Member

    Messages:
    1,750
    Likes:
    1,849
    justinreilly, Sparrowhawk and rosie26 like this.
  19. Ember

    Ember Senior Member

    Messages:
    1,750
    Likes:
    1,849
    beaker and justinreilly like this.
  20. Hermes

    Hermes

    Messages:
    26
    Likes:
    42
    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
     
    Valentijn likes this.

See more popular forum discussions.

Share This Page