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IOM Bias: "The Cause(s) of Chronic Multisymptom Illnesses Following the First Gulf War"

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Ren, Nov 14, 2013.

  1. Ren

    Ren One of nineteen million dark horses.

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    I searched IOM for "chronic fatigue syndrome". (I have not searched other G93.3 names.)
    http://www.iom.edu/Global/Search.aspx?q=chronic+fatigue+syndrome&output=xml_no_dtd&client=iom_frontend&site=iom&proxyreload=1

    I have not looked indepthly at the links which the search yields. But I did quickly go through the second item in the list. It looks like it's perhaps been part of a presentation. The date on the search list for this item is "updated on 2009-09-08". I didn't notice a date on the "presentation" info itself: http://www.iom.edu/~/media/files/activity%20files/veterans/gulfwarlitreview/clauw042005.ashx

    The name of the presentation is "The Cause(s) of Chronic Multisymptom Illnesses Following the First Gulf War".

    There are 22 pages total. Below are a few. (I did not see any copyright markings. I am sharing this for educational purposes. Source name and links are listed above.)

    clauw iom 1.JPG clauw iom 2.JPG clauw iom 3.JPG clauw iom 9.JPG clauw iom 12.JPG clauw iom 16.JPG IOM CFS.JPG
    Esther12 likes this.
  2. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I like the third slide with the Venn diagram of ME fitting right in the middle of somatoform disorders. I wonder how he decided on all the shapes and overlapping, etc. it's comical to me but unfortunately his audience probably took it at face value.
    beaker likes this.
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Oh, that slide isn't looking so funny to me anymore. I got a frisson of dread when I saw the title of the slide: "Chronic Multisymptom Illnesses."
    leela and Ren like this.
  4. Ren

    Ren One of nineteen million dark horses.

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    Re "frisson of dread". Yes, like that expression - someone just walked over my grave.

    Two additional notes: 1) I thought the term CMI was singular, but in Clauw's slides, it's used in the plural. I saw it used in the plural several times on another .gov site as well, and noticed the the following sentence (though singular here):

    "Gulf War Veterans also reported more instances of chronic multisymptom illness, including chronic fatigue syndrome, fibromyalgia, and multiple chemical sensitivity."

    https://www.federalregister.gov/articles/2011/04/14/2011-8937/determinations-concerning-illnesses-discussed-in-national-academy-of-sciences-reports-on-gulf-war#h-10

    And 2) Clauw's slide 9 lists as a reference - himself, Wesseley, Sharpe, and others including Engel who I assume is the same Engel who I ealier learned is supposed to be the father of the biopsychosocial model - with its emphasis on the word "illness" meaning phsyical and/or psychological problems, while "disease" alone means physical problems.
    justinreilly likes this.
  5. Nielk

    Nielk

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    Thank you for finding this. I knew I had read this somewhere - where they equate CFS with CMI. This is why I used it in my "nightmare' article.

    They are clearly showing us where they are heading. We can bury our heads and live in denial or we can choose to fight this.
    peggy-sue, beaker, leela and 2 others like this.
  6. Ren

    Ren One of nineteen million dark horses.

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    Nielk - sorry I didn't remember this in your article! I try to cite things and leave notes (bread crumbs) for myself. I'd lose my head if it wasn't attached. :)
    peggy-sue, leela and Nielk like this.
  7. knackers323

    knackers323 Senior Member

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    Anything non U.S members can do?
  8. Nielk

    Nielk

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    Yes @knackers323 - thank you for asking.

    This thread shows the current actions people can take - http://forums.phoenixrising.me/index.php?threads/current-actions-against-the-hhs-iom-contract.26377/

    Actions to stop the IOM contract in support of the 50 experts and the 171 patient advocates.
    For U.S. citizens:
    Simple instructions for e-mailing your congressional representatives HERE.
    For everyone worldwide:
    Simple instructions for e-mailing President Obama's science advisers HERE.
    Simple instructions for e-mailing president Obama and vice president Biden HERE.

    You can sign the petition to stop the IOM contract HERE.
    The petition in support of the expert's letter is HERE.
    Tweeting campaign in support of experts and advocates letter HERE


    The actions in red can be taken by anyone worldwide.
  9. Ember

    Ember Senior Member

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    Ren likes this.
  10. Ecoclimber

    Ecoclimber Senior Member

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    Do not look at the trees for the forest. Do not look at the result of GWI.

    It doesn’t matter whether it’s CFS, Fibro, infectious diseases, chemical sensitivities, GWI, the results will be the same.

    It probably doesn’t matter on the makeup of the panel.

    The key to everything is a change in the policy directive.

    This is the requirement on how panel members review material, what material gets reviewed, what research is allowed in.

    The policy directive was changed by the IOM from symptom based criteria to evidence base criteria. So now go back through all the reports and search on what the IOM determines as the meaning and the standards of evidence-based criteria. This is the key. This determines whether symptoms are defined as an illness or a disease or categorize as a psychogenic disorder.

    GWS couldn’t pass the test. CFS could not pass the test. This is why they were kicked over into the category of a psychogenic disorder. This why they only want a 1-day CPET.

    I beleive this is the key. I believe Alex3619 wrote some posts on this concept.
    Tito, beaker, Snow Leopard and 3 others like this.
  11. Ember

    Ember Senior Member

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    A directive concerning the use of evidence-based criteria is embedded in the SOW task description:
    Kate Meck's email mentions including on the committee “those who are less familiar with the disease, but capable of objectively approaching and understanding the scientific evidence and experiences of the ME/CFS experts and the patient community.” Such individuals, according to the task description, may include those "with expertise in other multi-symptom, complex disorders or diseases:”
    Notice that ME/CFS has already been described here as a multi-symptom, complex disorder or disease.
    Last edited: Nov 14, 2013
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  12. acer2000

    acer2000 Senior Member

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    I hope they don't put Dr. Clauw on the committee. He is wholly invested in his stress induced illness/biopsychosocial model of FMS (and CFS). I saw him once and he told me if I took Cymbalta I'd be well enough to live a normal life. I gave it a shot, it didn't do anything useful, and I am still sick over 5 years later.
    Ren likes this.
  13. alex3619

    alex3619 Senior Member

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    I found a spare head here, is it yours? :) Oh, wait, is it mine? :eek:
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  14. Ren

    Ren One of nineteen million dark horses.

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    At this time, I am slowly assembling a master list, so to speak, of authors/editors/staff/reviewers with their listed institutions, from Gulf War and Health vol.1-9. Monkeys are probably more tech savvy than me, so if anyone can suggest the best way to post/share this bulk of information in the most-searchable form, please share.

    I agree with what Ecoclimber and others have stated about examining the directives at hand. And perhaps that should take priority over authors, etc. But I already started that task and feel that info could be of benefit as well. It may yield nothing. But someone might see patterns/connections (now, later, much later) once it's assembled.

    Someone on another thread posted a link to Malcolm Hooper's Magical Medicine. I've read part of this some time ago, and one day hope to finish it. I wish I "owned" the information presented there and could see this current process through that filter, but...

    I would love to see a Magical Medicine volume 2, 3, etc. that addresses these issues as they've played out in the US and elsewhere - since it is all intertwined.

    So - again - I'm going to (slowly) finish assembling the authors/editors/staff/reviewers/institutions list. Everything of course depends on what's happening at any given moment. But what suggestions does anyone have for my next data collection? Several things come to mind - if someone has not done these - 1) A searchable Gulf War and Health vol.1-9 bibliography; 2) a list of the exact tasks laid out for each volume; 3) who funded the task(s) assigned for each volume; 4) the process by which literature was selected for each volume; 5) and I guess within the Gulf War community, what volume critiques already exists, especially as they pertain to G93.3?

    I have to review the "evidence based" term again, as I don't yet own this concept and the problems/doublethink(?) built into it.

    Thanx all. Alex - you made me laugh!
    alex3619 likes this.
  15. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Ren, thanks, we do need a list of all authors (and staff, etc) on each volume.

    imo, your next projects 1-3 aren't that needed. But #4 as ecoclimber says, is critical. What were the standards for the literature selected and for info included in final report? evidence-based medicine apparently. So exploring that, e.g. what it means, what the outcome was, why it was bad/unscientific/improper/factually wrong would be the next task I think is important. Let us know if you want to 'claim' that project.
  16. Ren

    Ren One of nineteen million dark horses.

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    Thanx for input. I won't claim anything. I'll just work to finish up the authors list, and let the other contemplatively take residence somewhere in my mind. If by that time, someone else has started, I can assist - If not, I can start to dig in myself. I worry less when I have something to work at. :)
  17. Ren

    Ren One of nineteen million dark horses.

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    Additional quotes:

    http://www.publichealth.va.gov/exposures/gulfwar/medically-unexplained-illness.asp
    "Gulf War Veterans' Medically Unexplained Illnesses" (Reviewed/Updated Date: March 11, 2013)

    "A prominent condition affecting Gulf War Veterans is a cluster of medically unexplained chronic symptoms that can include..."

    "VA refers to these illnesses as 'chronic multisymptom illness' and 'undiagnosed illnesses.' We prefer not to use the term "Gulf War Syndrome" when referring to medically unexplained symptoms reported by Gulf War Veterans. Why? Because symptoms vary widely."

    "VA presumes certain chronic, unexplained symptoms existing for 6 months or more are related to Gulf War service without regard to cause."

    "These illnesses include... Chronic Fatigue Syndrome, a condition of long-term and severe fatigue that is not relieved by rest and is not directly caused by other conditions."

    (http://www.publichealth.va.gov/exposures/gulfwar/chronic-fatigue-syndrome.asp CFS is an unexplained, severe and persistent fatigue that is not helped by rest... Many patients report relief from acupuncture, yoga and Tai Chi, which are offered at some VA medical centers...Other treatment options include antidepressants, counseling, support groups, and muscle relaxation techniques." "Reviewed/Updated Date: December 19, 2012")

    "VA contracts with the Institute of Medicine (IOM) to scientifically review the evidence for possible connections between Gulf War Veterans’ illnesses and exposure to environmental agents or preventive medicine during military service, and the best treatments for these illnesses."

    And from
    https://www.federalregister.gov/articles/2011/04/14/2011-8937/determinations-concerning-illnesses-discussed-in-national-academy-of-sciences-reports-on-gulf-war#h-10

    "The NAS update committee further noted that an inference can be made that the high prevalence of medically unexplained disability reported by Gulf War Veterans cannot be reliably attributed to any known psychiatric disorder."

    Cue DSM-5??
    Last edited: Nov 15, 2013
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  18. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    good attitude. thanks

    and interesting finds on the va and federal register sites.
    Ren likes this.
  19. Ember

    Ember Senior Member

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    The SOW already describes ME/CFS as a disorder or illness:
    The evidence supporting the ICC diagnostic criteria (PENE, neurological abnormalities, immune impairments, and energy production and ion transport impairments) is found in the ME Primer (pp. 2-6).

  20. Ren

    Ren One of nineteen million dark horses.

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    Nothing special to share - I've slowly begun Gulf War and Health Treatment for Chronic Multisymptom Illness (2013). Will see what I can wrap my mind around. Cheers, all.

    P.S. Why is there a giant void after my post?? It won't go away.
    Last edited: Nov 18, 2013

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