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Institute of Medicine thoughts about CFS in 2001

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Oct 17, 2013.

  1. Nielk

    Nielk

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    Posted on Co-Cure by Dr. Marc-Alexander Flucs:

    Source: Institute of Medicine
    Date: July 26, 2001
    URL: http://www.iom.edu/Reports/2001/Gulf-War-Veterans-Treating-Symptoms-and-Syndromes.aspx
    http://books.nap.edu/openbook.php?record_id=10185
    http://books.nap.edu/openbook.php?record_id=10185&page=151

    Gulf War Veterans: Treating Symptoms and Syndromes (2001) ---------------------------------------------------------[Page 151-152]

    Appendix C Unique Considerations in Chronic Fatigue Syndrome ------------------------------------------------------------

    Although fatigue is a common symptom, it is also one that is vague, imprecise, and nonspecific. One of the essential problems in the study and measurement of fatigue, either as a singular entity or as a component of a more well-defined disorder, is the failure to differentiate various types of fatigue. In Chronic Fatigue and Its Syndromes (Wessely et al. 1998), the authors challenge the reader to try a 'thought experiment' that clearly illustrates the dilemma encountered in defining and assessing fatigue. Below, their experiment has been expanded and modified; however, the message regarding the problems encountered in defining fatigue remains intact.

    You run 5 miles under adverse conditions; even before starting you feel weak and daunted at the prospect. After completing only a portion of the course, you stop; the next day you are sore and tired. You are asked to carefully check the references for a 600-page book on fatigue. You feel overwhelmed and really just want to ride your bike. After a few hours your eyes hurt, you are weary, your concentration diminishes, and you are making many mistakes. It's flu season and you are feeling achy and weak. Your nose is running, your throat is sore, and all you want to do is go to bed. You have just been up for two days finishing a grant proposal, then had to take a 'red eye' and deliver the application in person to make the grant deadline. You have been driving in your car for an hour. The landscape is boring and you can hardly keep your eyes open. All you want to do is sleep. You also often feel like this when at home watching TV.

    * Climbing stairs has become progressively, though subtly, more difficult over the last two years. * Although at first, exertion is not bothersome, after 10-15 minutes, you experience constant cramping in your extremities.

    These examples illustrate the multidimensionality of fatigue. Fatigue can occur in anticipation of a task and be influenced by both physical (e.g., the length of the run) and psychological factors (e.g., how rewarding it will be). Fatigue can also be interpreted as a sense of effort needed to perform a task, and both physical and mental tasks may result in fatigue. In conjunction with the sensation or perception of fatigue, the effort associated with a task may be manifested as a change in behavior, especially a decrement in performance (e.g., information processing declines when one feels tired). Fatigue is also most often acute, and in such cases typically resolves after completion of the task. In cases in which fatigue is more chronic and pervasive, it is frequently associated with illness, stress, and sleep disturbances. Finally, as the last two vignettes illustrate, fatigue must be distinguished from sleepiness or drowsiness and true muscle weakness since these symptoms are associated with a different array of conditions, usually primary sleep and muscle disorders.

    Thus, it is clear that a simple question regarding 'fatigue' is not likely to be very informative or precise. Yet elements of fatigue can be ascertained if care is taken in questioning an individual or in constructing an instrument. However, complicating matters even more is the fact that patients often have additional meanings for fatigue. Sometimes, the word fatigue is used as a synonym for other complaints while at other times it becomes a general term to encompass an array of symptoms that occur together.

    Patients will often equate fatigue with weakness, dizziness, lack of coordination or stamina, feeling 'spacey,' poor concentration/cognitive abilities, having 'rubber legs,' boredom, lack of motivation, malaise, or feeling blue or depressed. Despite the further ambiguity introduced by these descriptors, it is clear that fatigue has distinct physical and mental aspects that must be considered in measurement.

    --------(c) 2001 Institute of Medicine (c) 2001 National Academic Press
     
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  2. Nielk

    Nielk

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    Of course they quote Wessely.
     
  3. Firestormm

    Firestormm Guest

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    I don't get it. Fatigue is ambiguous. Isn't the above an acknowledgement of what we have been saying is wrong with things like "Chronic Fatigue Syndrome" for ages? The word 'fatigue' does mean different things to different people, depending on their circumstance. It is as ambiguous as 'pain' in my mind (;)).

    On the one hand, it is what we have as a symptom, and the same name is used to describe the symptom in other diseases. On the other hand, there has ever been a suggestion that research would in time remove the dominance of 'fatigue' as the descriptor for the disease.

    Have I completely missed your point here?
     
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  4. Nielk

    Nielk

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    Of course "fatigue" is ambiguous. We don't need a report from IOM to tell us that. My point is that they even concentrate on that for ME/CFS and that from all people they quote Wessely.
     
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  5. Iquitos

    Iquitos Senior Member

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    A warning for what's to come when/if they pick their "outside experts." There were plenty of scientists and clinicians in 2001 that they could have consulted and/or quoted.

    But they chose a psychiatrist who is/was under the influence of UNUM and other disability insurance sellers.

    Yes, firestorm, you missed Nielk's point: an illustration of just how bad an IOM definition of mecfs will be and of who we might expect to be their "experts."
     
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  6. Nielk

    Nielk

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    In January 2013, IOM issued a report titled: Gulf War and Health: Treatment for Chronic Multisymptom Illness.

    On page 22 the report states:

    Chronic unexplained symptoms are common in civilians. Such terms as medically unexplained symptoms, medically unexplained physical symptoms, somatoform disorders (for example, somatization disorder, undifferentiated
    somatoform disorder, and pain disorder), and functional somatic syndromes are often used to describe the disorders of civilians who have chronic unexplained symptoms. The common thread among the terms is that symptoms experienced by patients cannot be explained as pathologically defined, or organic, disease (Sharpe and Carson, 2001). Such syndromes as irritable bowel syndrome (IBS), chronic fatigue syndrome (CFS, also called myalgic encephalomyelitis), and fibromyalgia often are included in this group of unexplained illnesses, as are chronic unexplained symptoms that do not meet case definitions for IBS, CFS, fibromyalgia, and other functional somatic syndromes that have specified diagnostic criteria.
     
  7. peggy-sue

    peggy-sue

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    I've said this before and I'll say it again. I have ME but I do NOT have any form of "fatigue".
    My body does not do anything aerobic, it does not produce enough energy to function normally.

    This never was, and never will be "fatigue".
     
  8. Desdinova

    Desdinova Senior Member

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    So dumb question but I take it that the DHHS awarded the IMO the contract? Considering their past record a small snip-it shown above, I'm not surprised. And I'd bet a dollar to a donut that this is something (one of many things) that was agreed upon during the closed door meetings the Major Insurance providers had with the government back in 2009-2010. Got to keep the cost low after all or else their won't be enough healthy people to balance things out. :(
     
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  9. Ecoclimber

    Ecoclimber Senior Member

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    IOM Panel selection process concerning scientific research material


    Extensive searches of the scientific and medical literature were conducted, and over 4,000 potentially relevant references were retrieved. The committee limited its review of the literature primarily to epidemiologic studies to determine the prevalence of diseases and symptoms in that population.

    How many peer review epidemiologic studies on ME/CFS and Chronic Fatigue Syndrome are out there?

    The committee decided to use only peer-reviewed published literature on which to base its conclusions. The process of peer review by fellow professionals increases the likelihood of amhigh-quality study but does not guarantee its validity or the generalizability of its findings to the entire group of subjects under review. Accordingly, committee members read each study critically and considered its relevance and quality. The committee did not collect original data,mnor did it perform any secondary data analysis (exception to calculate response rates for mconsistency among studies).

    After securing the full text of the peer-reviewed epidemiologic studies it would review, the committee determined which studies would be considered primary or secondary studies.

    Primary studies provide the basis of the committee’s findings. To be included in the committee’s review as a primary study, a study had to meet specified criteria. The criteria include studies that provide information about specific health outcomes, demonstrate rigorous methods, describe its methods in sufficient detail, include a control or reference group, have the statistical power to detect effects, and include reasonable adjustments for confounders.

    Other studies were considered secondary for the purpose of this review and provided background information or “context” for the report. Another step that the committee took in organizing its literature was to determine how all the studies were related to one another.
     
  10. Ecoclimber

    Ecoclimber Senior Member

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    IF you see any thing that stands out to you then, post about it so we can generate some responses within this thread concerning these issues. Discuss your fears and concerns! Raise awarness to other members. It's only your future that is at stake.
     
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  11. peggy-sue

    peggy-sue

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    ummm... the only epidemical studies are all BPS school of recursive citations based?

    Many of them will be meta-analyses?

    (every time 3 papers get published, another meta-analysis gets published from them)

    Because of this recursive citation, the same studies are likely to appear within different papers and their impact multiplied falsely?
     
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  12. peggy-sue

    peggy-sue

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    Oh - and there won't be any biomedical papers included at all.

    Although that goes without saying. Which is why I didn't say it. Until now.
     
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  13. Ecoclimber

    Ecoclimber Senior Member

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    Infectious diseases:
    The evidence is sufficient to conclude that there is a causal relationship between exposure to a specific agent and a specific health outcome in humans. The evidence is supported by experimental data and fulfills the guidelines for sufficient evidence of an association (defined below). The evidence must be biologically plausible and must satisfy several of the guidelines used to assess causality, such as strength of association, a dose– response relationship, consistency of association, and a temporal relationship.

    The basic message is that historically this panel has always operated from an evidentiary base criteria and not a symptom based criteria. What this means is that they discard any information that is based on solid evidence. This is why, I am speculating now, this contract came after Lipkin's results.

    Unless there is a standard medical lab tests whereby a doctor can determine whether you have ME or Fibro, than to this panel you do not have Fibro or ME from a evidentiary point of view. When Lipkin could not find any live viruses in the blood of the ME/CFS cohort, the panel would consider, base on their evidentiary criteria, that ME is not caused by an infectious disease. Do you understand the ramifications? In their deliberations, they discard all symptom based reporting. Do you think patients will understand what that last sentence means?

    I would like to elaborate a bit more on how the committee evaluated “multi-symptom illness”, also referred to as Gulf War illness or Gulf War syndrome. Numerous studies have documented that those deployed to the Gulf War have an increased prevalence of a disabling complex of self-reported symptoms such as fatigue, musculoskeletal pain, sleep disturbances, cognitive dysfunction, and moodiness, among others. The Volume 4 committee looked at this symptom reporting by deployed Gulf War veterans and attempted to determine whether a unique illness could be defined by these symptoms but our committee accepted that multi-symptom illness was indeed a diagnostic entity and examined the literature to make conclusions regarding its association with deployment to the Gulf War. We did not attempt to determine if the multisymptom illness seen in Gulf War veterans

    environmental influences, and that address possible confounding factors, such as smoking. However, the committee feels that further studies based solely on self-reports may not contribute to the scientific evidence or accurately reconstruct exposures that occurred 20 years ago in the Persian Gulf.

    Finally, the committee believes it would be valuable to undertake high quality clinical trials that may result in identifying effective, evidence-based treatments for multisymptom illness.
     
  14. user9876

    user9876 Senior Member

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    The problem with medics talking about evidence is they get terribly confused between evidence something is not the case and a lack of evidence where no information is available.
     
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  15. peggy-sue

    peggy-sue

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    And they believe the psychs who say there is evidence, when there is not.

    eg, The hugely successful PACE trial, proving effective recovery..... :mad:
     
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  16. Nielk

    Nielk

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    That's why I love alex3619 's signature:

     
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  17. Ecoclimber

    Ecoclimber Senior Member

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    IOM Panel Results
    GWS treated as One Symptom-Based Syndrome if the patient had the folowing conditions listed below
    CMI treated as Evidence-Based meaning that each condition is now considered a separate illness BUT only if supported by evidence-base criteria.

    Evidence-Base criteria requires proof of medical biological/organic cause validated through medical lab result. If the conditions below cannot be supported by medical verification then they are not considered an illness but a symptom-based illness which falls under the heading of a psychogenic disorder.

    CMI
    Conditions lasting more than 6 months
    Evidence-based illness requiring supporting medical criteria otherwise regarded as symptom-based psychogenic disorder
    • Chronic Fatigue Syndrome no medical lab test supporting evidence-base criteria, considered symptom-based
    • Fibromyalgia, no medical lab test supporting evidence-base criteria, considered symptom-based
    • insomnia no medical lab test supporting evidence-base criteria, considered symptom-based
    • morning stiffness no medical lab test supporting evidence-base criteria,considered symptom-based
    • headache, no medical lab test supporting evidence-base criteria, considered symptom-based
    • memory problems.no medical lab test supporting evidence-base criteria,considered symptom-based
    • Functional gastrointestinal disorders unless there is a medical lab test supporting evidence-base criteria, considered symptom-based
    • muscle pain, no medical lab test supporting evidence-base criteria, considered symptom-based
    • cognitive problems, no medical lab test supporting evidence-base criteria, considered symptom-based
    • rashesunless medical lab test supporting evidence-base criteria, considered symptom-based
    • diarrhea unless medical lab test supporting evidence-base criteria, considered symptom-based
    • Undiagnosed illnesses unless medical lab test supporting evidence-base criteria,considered symptom-based
    • Infectious diseases unless medical lab test supporting evidence-base criteria, considered symptom-based
    Despite these studies, on November 17, 2008, a congressionally appointed committee called the Research Advisory Committee on Gulf War Veterans' Illnesses, staffed with independent scientists and veterans appointed by the Department of Veterans Affairs, announced that the syndrome is a distinct physical condition.

    Considering the above evidence, do we you really think we have a seat on the IOM panel board with the ME/CFS IOM contract considering the fact that they disregarded RAC research data, testimonies and advice in a mandate of Congress? Shortly after the decision of the IOM, the VA gutted the board and reduced funding.

    IOM Panel disregarded the research data from the RAC and their reccomendations. This is how this board operates. They have an agenda to align medical polices with the UK, Australia

    The ten year historical actions of the IOM panel is based on evidence-base-criteria. IOM policy is to move medicine from a symptom base criteria to an evidence-base-criterica requiring medical proof of a biological/organic cause established by medical lab results. Other wise the symptoms are a syndrome falling under the category of a psychogenic disorder

    If they follow thier policy, the IOM panel will list all conditions under ME/CFS by the CCC, Fukuda, NICE, Homes, Oxford etc as separate illnesses or diseases not one syndrome or illness requiring proof of evidence-base criteria

    Please discuss by post in this thread and ask further questions if unclear!!
     

    Attached Files:

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  18. Esther12

    Esther12 Senior Member

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    Sorry for not keeping up, but where was this from?

    I do haea growing sense of dread over this.
     
  19. Ecoclimber

    Ecoclimber Senior Member

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    Taken from the IOM Panel Report Volume 5 included in the posting
     
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  20. Ecoclimber

    Ecoclimber Senior Member

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    IMPORTANT INFORMATION ON THE IOM PANEL PLEASE READ!!​
    WHY CONGRESS WILL BE NO HELP TO US


    I want to remind everyone how Congress works. We are dealing with HHS a cabinet level department within the Executive Branch of Government. This agency is charged to carry out the directives, orders and policies of the President of the United States. These powers vested in the executive branch of government were enshrine within the U.S. Constitution. This means the President can dictate his vision for that agency by appointing cabinet level Secretaries who have oversight to ensure his orders are carried out. He can reorganize the department, he can eliminated departments and programs without any consideration by Congress.

    The Gulf War Veteran had the full support of Congress. They had the backing of every member of Congress and the people of the United States. They had a Congressional mandate in the Research Advisory Committee, They had the powerful Veteran Lobby. With all that power backing them, it did them no good.

    The IOM ignored Congress, they ignored the Research Advisory Committee, they ignored the research data from the RAC, they ignored the few people representing them on the board. The Policy was already determined by the President and that is how the board ruled.
    USATODAY REPORTS
    THE BEHAVIOR OF VA IOM PANEL AND THE SUBSEQUENT HEARINGS​

    Steven Coughlin, a former epidemiologist in the VA's public health department testified under oath before a subcommittee of Congress concerning the IOM Panel the following:
    "If the studies produce results that do not support the office of public health's unwritten policy, they do not release them," "On the rare occasions when embarrassing study results are released, data are manipulated to make them unintelligible." ******

    Coughlin participated in a study of recent veterans of Iraq and Afghanistan that linked exposure to burn pits to greater incidences of asthma or bronchitis. His request to see their medical records was denied, Coughlin said, and the results of the study were never published.******

    "Anything that supports the position that Gulf War illness is a neurological condition is unlikely to ever be published,"******

    The IOM research included veterans from the past 20 years, rather than just Gulf War veterans, and "lumped" their symptoms together, according to Steele.

    Coughlin said a 2012 panel of outside experts hired to help the Institute of Medicine study neurological connections to Gulf War illness was stacked in favor of those who believed the disease is psychological.******

    "There was no one to present the opposing side — that it's neurological," Coughlin said. "Science is self-correcting, but if people don't publish data that doesn't support an opposing hypothesis, then it's a huge problem."******

    After the 1991 Gulf War, a series of research reports raised concerns that the veterans' children were more likely to be born with defects, and that veterans' spouses were also becoming ill. Congress mandated that the VA maintain a registry of Gulf War veterans' family members. The data has never been released, and Coughlin said he has "been advised that these results have been permanently lost."

    The DOD lost the records on what kind of vaccines that were administered to the veterans prior to deployment.

    He said his supervisors told VA's chief of staff that restructuring a survey for Gulf War veterans so it did not focus on psychosomatic issues would cost more than $1 million and delay the study for a year — neither of which was true. He refused, adding that he kept a document trail of e-mails and reports to support his claims.******

    Rep. Mike Coffman, R-Colo., and a Marine who served during 1991 war, called VA's handling of Gulf War illness "embarrassing." He asked VA why they changed Congress's charge to ask the IOM to do research on treatments, to which she said VA let the experts decide what should be looked at. He also asked why VA had spent money meant for Gulf War vets on other programs, but Davey said she was not prepared to respond to that question.
    VA Chief of Staff John Gingrich, and he feels, based on Coughlin's testimony, that Gingrich was lied to by his staff. Those people should be "punished with criminal sanctions,"

    Lea Steele, a researcher at the Veterans Health Research Program at Baylor University
    VA spent $120 million on Gulf War illness, but just five programs focused on treatments, and two of those were for psychiatric care.******
    MAJOR STATEMENT BY HEAD OF THE IOM
    Bernard Rosof, head of the IOM committee, said they found no one cause to what they called "chronic multisymptom illness," and that there was no one treatment for all of those veterans.******

    The IOM is driven by a policy directive. This is the policy of the IOM evidence-based requiring medical proof supported by lab tests indicating a bioloical/organic cause. This policy has been in place and is still in place. Unless the policy directive is changed. This will be the outcome on the ME/CFS IOM CONTRACT!
     
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