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Composition of IoM GWI/CMI redefinition panel: It Ain't Pretty

Discussion in 'Institute of Medicine (IOM) Government Contract' started by justinreilly, Nov 19, 2013.

  1. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I don't know if this is part of the GW&H IoM series. The YouTube clips were testimony about the failings of the last IoM GWI panel's report which came out in Jan 2013. That one was officially on treatment, but they also changed the name and redefined it. There is currently another GWI redefinition panel under way and that panel's composition is what I wrote about.
  2. Ecoclimber

    Ecoclimber Senior Member

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    Yes, Gulf War Veterans have a stronger lobby and stronger support among Congress and Senators because of the popular support among the general population. DOD has unlimited resources. The RAC was created because the VA was not doing its job.
  3. Andrew

    Andrew Senior Member

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    Ah, I got mixed up. You posted a link to the definition panel while I'm looking at the treatment guide (Gulf War and Health: Treatment for Chronic Multisymptom Illness)
  4. August59

    August59 Daughters High School Graduation

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    I read somewhere recently that the DOD was going outside of the VA to do research on these diseases because it was obvious that the VA wasn't capable of handling this research and also does not seem to take it seriously.

    This statement came in response to multiple inquiries from a oversight committee (or something similar) to the VA about the outcome of a research study. The VA was asked numerous times and never got a straight answer and come to find out that the study had never even began and a good bit of the allocated funds had been used for other purposes.

    The DOD went outside to get the research done and it was completed sooner than expected and it came in under budget. The DOD also has a massive budget for research and I sure wish there was a way to tap into it for ME/CFS, but it looks as if Dr. Klimas may have found a way!!!
  5. Ren

    Ren One of nineteen million dark horses.

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    Alright, it just seems backwards to develop a definition *after* releasing an alleged treatment guide.

    The IOM CMI Case Definition project scope includes as list item number three: "Published peer-reviewed literature concerning case definitions for other populations with a similar constellation of symptoms."

    http://www8.nationalacademies.org/cp/projectview.aspx?key=49546
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  6. Nielk

    Nielk

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    Very good point !
  7. alex3619

    alex3619 Senior Member

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    Similar constellation of symptoms includes somatization, bodily distress syndrome etc.
  8. Ren

    Ren One of nineteen million dark horses.

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    And CFS, according to IOM GW&H texts. I wonder if the IOM ME/CFS definition committee will in turn cite the work of the IOM CMI definition committee since other IOM GW&H texts reference multiple earlier IOM GW&H texts. Seems highly incestual, besides corrupt.
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  9. Andrew

    Andrew Senior Member

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    Do we have examples of this that I can cite?
  10. Ren

    Ren One of nineteen million dark horses.

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    There may be other examples in the following text (and earlier texts of course), but here are some examples from
    Gulf War and Health: Treatment for Chronic Multisymptom Illness (2013)
    http://www.nap.edu/download.php?record_id=13539

    (Bold added - not in original)

    "Because many people who have CMI also have other unexplained conditions with shared symptoms (such as CFS, fibromyalgia, and IBS) and may have comorbid conditions (such as depression and anxiety), treatments recommended in guidelines or supported by evidence as summarized in systematic reviews for these related and comorbid conditions also were reviewed to identify any treatments potentially beneficial in people who have CMI." (p.3)

    "The committee conducted a de novo systematic assessment of the evidence on treatments for symptoms associated with CMI. The committee also identified evidence-based guidelines and systematic reviews on treatments for related and comorbid conditions (fibromyalgia, chronic pain, CFS, somatic symptom disorders, sleep disorders, IBS, functional dyspepsia, depression, anxiety, posttraumatic stress disorder, traumatic brain injury, substance-use and addictive disorders, and self-harm) to determine whether any treatments found to be effective for one of these conditions may be beneficial for CMI." (p.4)

    "Many people who have CMI also have other unexplained conditions with shared symptoms (such as chronic fatigue syndrome, fibromyalgia, and irritable bowel syndrome) and may have comorbid conditions (such as depression and anxiety)." (p.29)

    "Twelve commonly comorbid conditions or conditions with shared symptoms were identified: fibromyalgia, chronic pain, CFS, somatic symptom disorders, sleep disorders, functional gastrointestinal disorders, depression, anxiety, posttraumatic stress disorder, traumatic brain injury, substance use and addictive disorders, and self-harm." (p.32)

    "Many of the symptoms of CFS and CFS-like illness (meeting some but not all of the criteria for CFS) are similar to those experienced by people who have CMI. Both CMI and CFS include a variety of symptoms—fatigue, cognitive symptoms, and pain." (p.99)

    "Table 5-3 shows that several treatments are considered effective in managing more than one of the related and comorbid conditions. There is substantial evidence in guidelines and from systematic reviews that tricyclic medications, SSRIs, and SNRIs may be used effectively in the management of patients who have conditions related to CMI. For example, SSRIs or SNRIs are recommended as therapy for seven of the conditions: fibromyalgia, somatic-symptom disorders, IBS, anxiety, depression (including depression resulting from chronic pain or CFS), PTSD, and self-harm." (p.119; Table 5.3 "Summary of Treatments Recommended in Guidelines or
    Found to Be Effective in Systematic Reviews for Conditions Comorbid with and Related to Chronic Multisymptom Illness" - lists CFS under "condition", p.120)



    P.S. Taken from an earlier post, there's also current VA info which classifies CFS as a type of chronic multisymptom illness:

    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."


    I found another VA doc similar to the info above and will post it here (when I find it again) so this info will all be together. :)
    Last edited: Nov 26, 2013
  11. Ren

    Ren One of nineteen million dark horses.

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    Alright - found it: A "fact" sheet on Medically Unexplained Symptoms http://www.warrelatedillness.va.gov/WARRELATEDILLNESS/education/factsheets/medically-unexplained-symptoms.pdf with last update listed as December 2012.

    "This fact sheet gives an overview of three specific MUS’s [Medically Unexplained Syndromes]: Chronic Fatigue Syndrome, Fibromyalgia, and Irritable Bowel Syndrome and discusses things you can do to minimize the symptoms and improve your quality of life."

    "A syndrome is a collection of signs and symptoms known to frequently appear together but without a known cause. CFS, FM, and IBS are all syndromes. A disease is a known entity which has a recognized cause and usually a demonstrable cellular, tissue and/or organ abnormality with an identifiable group of signs and symptoms."

    (Compare the above of course with WHO G93.3, a disease of the nervous system.)

    "The diagnosis of a medically unexplained syndrome (CFS, FM, IBS) is based on a group of persistent and specific troublesome symptoms... It’s important to realize that treatment and prognosis for medically unexplained symptoms versus a medically unexplained syndrome (CFS, FM, IBS) is often the same, with the focus on reducing symptoms and improving quality of life."

    Note: In the above document, MUS's is defined as medically unexplained syndromes; While in GW&H Treatment for CMI, MUS is defined as medically unexplained symptoms. (p.xx)

    The following quotes are from GW&H Treatment for CMI:

    "Many soldiers who have postcombat illnesses have long-term unexplained symptoms that cannot now be attributed to any diagnosable pathophysiologic etiology or disease; such symptoms are referred to as medically unexplained. CMI differs from such postcombat illnesses as PTSD that have a defined complex of symptoms (Jones, 2006; Mahoney, 2001; Zavestoski et al., 2004)." (p.11)

    "In 2001, IOM released a report, Gulf War Verterans: Treating Symptoms and Syndromes, which examined how to manage medically unexplained physical symptoms (MUPS; termed CMI in this report) (IOM, 2001)." (p.12)


    *Based on this post and the last with these slightly varying definitions - Does it seem that Gulf War Syndrome (as CMI) has been stripped of its status as even a syndrome? Is this the goal with CFS as well? ME is a disease (at least according to WHO). CFS has at least been a syndrome. But will it be further watered down (i.e. broadly defined) to be diverse unexplained symptoms, i.e. CMI? It's confusing, as the "authoratative" texts aren't even clear.

    P.S. - See also, http://phoenixrising.me/archives/19990. Nielk's "The Nightmare Scenario - IOM Case Definition Contract Terrifies ME/CFS Advocates".
    Last edited: Nov 26, 2013
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  12. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    @Ren
    I think what Andrew was asking was not 'are the texts similar?', but
    (1) did one volume actually cite with a citation an earlier IOM report? and/or
    (2) are the language used and sources cited so similar between volumes that one can infer that one is just substantially copying the other?
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  13. Ren

    Ren One of nineteen million dark horses.

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    Okay - thanks for the clarification.I know GW&H (2013) cites earlier GW&H texts. I don't know if GW&H texts reference each other in regard to CFS - though I/we can answer this in time.

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