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Call for Investigation by the Inspector General of the IOM’s Conflict of Interest With Respect to ME

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Nov 11, 2013.

  1. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    It is possible to display clear bias even though one only states facts. Without going back and looking right now to see if they go further, simply having a section on ME where you only say things such as 'CFS has been categorized as a somatisation disorder', though factual, is misrepresentative of the disease and clearly shows bias in that they only present the fake science. There is no mention that 'ME has been categorized by WHO as a neurological disorder' for example.

    If you had MS would you want people redefining your disease who had flatly and soley described MS in previous reports as having been 'categorized as hysterical paralysis' without any mention that it is a neurological disease? They would be clearly ruled out for bias.

    When you swear to tell the truth, you also swear to tell the WHOLE truth, not selective little parts of it that make what you say into a misrepresentation.
     
    Last edited: Nov 13, 2013
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  2. Hermes

    Hermes

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    The IOM Plot thickens

    Reply from IOM

    Dear David,
    The Institute of Medicine does not, as an organization, hold positions on the topics that are addressed by committees or other activities. The report that you reference was written by an separate, independent consensus committee for a study that has now ended. The current study on ME/CFS is independent of the Gulf War study.
    Best,
    Kate Meck

    Reply to Kate Meck

    Dear Kate,
    The National Academy of Sciences and it’s affiliated body the IOM are cited as one of the authors. The report is copyrighted by the National Academy of Sciences ; authors tend to do this. The citations for the report in medical and scientific journals begins with the IOM ; authors tend to do this. The report committee was picked by the IOM and supervised by the IOM, and was to a large under the control or auspices of the IOM. The report was fully approved by the National Academy of Sciences and it’s affiliated body the IOM. There were no reservations. Legally speaking, the report is yours, it belongs to you. And the position taken in the report supports the NICE guidelines and CBT, GET and psychiatric drugs, which so far has proven to be ineffective and indeed harmful ; I refer you to the memorial to those people who have died of ME/CFS and it’s health complications http://www.ncf-net.org/memorial.htm

    I think we need to be honest about all of this.

    There remain continuing IOM issues of conflicts of interest, bias, consistency and accuracy, independence and the ‘Public Interest’ which need to be resolved.

    Best Regards
    David Egan.
     
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  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I think this bolsters my point (not that her explanation is valid).
     
  4. Hermes

    Hermes

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  5. Hermes

    Hermes

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    JustinReilly
    a fair, impartial and balanced analysis of medical and scientific facts looks at all of the facts, all of the 5,000 research papers into ME/CFS. IOM chose to just look at wessely school's work and NICE guidelines in relation to ME/CFS, and accept and promote that in it's GWI report. This is clear bias.
     
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  6. Nielk

    Nielk

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    They clearly cannot take ownership of the GWI report without responsibility for it's content. If IOM does not stand behind the work of their elected panels, what is their intrinsic value?
     
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  7. Nielk

    Nielk

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    Mark,

    "A half-truth is the most cowardly of lies."- by Mark Twain

    In order to prove bias, I don't believe one needs to show that statements have been falsified. If for example one states that 'ME/CFS is a men's disease' wou;d that be false? No, because there are men who suffer from ME/CFS. What they omit to say is that the majority of patients happen to be women.

    In the contest of the IOM study for GWI, I challenge you to come up with examples where they show evidence/viewpoints that ME/CFS is a biomedical disease.


     
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  8. Mark

    Mark Acting CEO

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    Of course I agree, but my point is that this kind of bias is going to be more difficult for you to demonstrate. Simply quoting or pointing to the passages where they mention somatisation is not going to do it. You would need to demonstrate that the overall body of their paper contains an imbalance of references to somatisation theories and insufficient reference to other valid (biomedical) perspectives. That would require a review of everything they've written to confirm that they have not mentioned any other perspectives anywhere else. And anyone wanting to confirm that what you've said is true would have to read the whole book as well to do so.

    All I'm saying is that you will need to frame, contextualise and justify the point you're trying to make here very carefully indeed, to explain the issue (with evidence) to the intended audience, or it will be very easy for the recipient to dismiss it.
     
  9. Mark

    Mark Acting CEO

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    I agree that bias, spin and misrepresentation do not require lies. They're much more effective when everything that is said is true. But I stand by my point that it is a lot more difficult to prove this kind of bias. What kind of evidence do you think would be necessary to prove this kind of selective consideration of evidence, and to prove bias, to a neutral or sceptical person?

    That sounds almost as if you think I have the time to read all 9 volumes of the IOM study on GWI, looking for something that neither of us believes is there. :rofl: Of course, you know that I don't, and it's not me that you need to convince anyway.

    If you're going to assert, as part of your case, that nowhere in the 9 volumes do they show evidence/viewpoints that ME/CFS is a biomedical disease, then it had better be true, and I guess you'd have to read all 9 volumes to know whether that's true or not...and even then, the person you're trying to convince would have to [have somebody] read all 9 volumes to check that what you say is true. That's all I'm saying...it takes a lot more work to prove/demonstrate that kind of a case and I'm suggesting that if this is the case you're wanting to make, you might want to think carefully about how you're going to prove it.
     
  10. Andrew

    Andrew Senior Member

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    The section on CFS treatment suggests CBT, GET, sleep medication, pacing, yoga, Tai Chi and massage. I don't know if this is bias, but all they had to do is read the Canadian Consensus Criteria to see a list of drugs and how well each one works. Considering how often the CCC is spoken about online, it is not an arcane document. What this shows me is they read the CDC website along with other websites made by places that parrot the CDC bias.

    BTW, the Gulf War project was to recommend treatment. The ME/CFS project is to develop a criteria. I don't know they ever developed a criteria before.
     
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  11. Mark

    Mark Acting CEO

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    In what respect is that a smoking gun? Can you find a sentence on that page that is not factually true?

    I can only see one sentence that is somewhat questionable as a 'fact': the bit about "cannot be explained as pathologically defined..." (quoting Sharpe et al)...I don't accept the use of "cannot" in that sentence, but there's a loose sense in which even that sentence might be considered factually true.

    Everything else on that page, as far as I can see, is a statement of fact. A biased choice and presentation of facts, certainly, and presented in a misleading way, but how do you prove that to a sceptic?

    And please don't get me wrong, I am not supporting what is written on that page, I think it's monstrous. My point is that the way it's written makes it difficult to refute because what is stated is factually true. All you can really say about it is: they are only presenting one side of the argument here - and if that's the point you're making, you will have to express the point you're making appropriately.
     
  12. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    You can search the whole book for a phrase like "CFS" and it only pops up on a few pages, and the treatment of "cfs" was very skewed overall.
     
  13. Hermes

    Hermes

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    JustinReilly and Mark

    Here are the facts and evidence you require


    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
     
    Last edited: Nov 13, 2013
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  14. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Hermes,
    Thanks for delving into this. valuable info you've provided!
     
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  15. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Mark,

    Thanks a lot for putting up that banner re the IoM situation. VERY helpful!
     
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  16. Ren

    Ren Primum Non Nocere

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    Regarding the question of doing text searches vs doing a full and more in depth reading of each text - maybe it's enough at this time to think of it as a survey, so to speak. Text searches and bibligraphies should be pretty informative, and depending upon what is found, more in depth readings can be done - if the will and manpower for such exists.

    Thanks, Hermes, for writing and sharing notes and mail!

    I believe justinreilly suggested a focus of Gulf War and Health Vol. 1-9. And so with that in mind, I thought I could assemble a list of authors from these volumes - to see who's done what, when, and where.

    I'm going to call my installment: Panels of the Past!

    And thus without further ado, behind volume number one...

    Gulf War and Health: Volume 1. Depleted Uranium, Pyridostigmine Bromide, Sarin, and Vaccines (2000)
    http://www.nap.edu/openbook.php?record_id=9953&page=R1

    "Carolyn E. Fulco, Catharyn T. Liverman, Harold C. Sox, Editors; Committee on Health Effects Associated with Exposures During the Gulf War; Division of Health Promotion and Disease Prevention" (p.R1)

    "The views presented in this report are those of the Institute of Medicine Committee on Health Effects Associated with Exposures During the Gulf War and are not necessarily those of the funding agency." (p.R2)


    (p.R5) Committee on Health Effects Associated with Exposures During the Gulf War:

    HAROLD C. SOX (Chair), Professor and Chair, Department of Medicine, Dartmouth-Hitchcock Medical Center
    MICHAEL ASCHNER, Professor, Department of Physiology and Pharmacology, Wake Forest University School of Medicine
    PATRICIA A. BUFFLER, Professor, Department of Epidemiology, University of California at Berkeley School of Public Health
    LUCIO GUIDO COSTA, Professor, Department of Environmental Health, University of Washington
    FIRDAUS S. DHABHAR, Assistant Professor, Department of Oral Biology, Ohio State University Health Sciences Center
    ANTHONY L. KOMAROFF, Professor of Medicine, Harvard Medical School, and Editor-in-Chief, Harvard Health Publications
    JANICE L. KRUPNICK, Professor, Department of Psychiatry, Georgetown University Medical School
    HERBERT LOWNDES, Professor, College of Pharmacy, Rutgers University
    ERNEST L. MAZZAFERRI, Emeritus Professor and Chairman, Department of Internal Medicine, The Ohio State University
    DEMETRIOS J. MOSCHANDREAS, Professor, Department of Chemical and Environmental Engineering, Illinois Institute of Technology
    CHARLES E. PHELPS, Provost, University of Rochester
    SAMUEL J. POTOLICCHIO, Professor, Department of Neurology, George Washington University Medical Center
    JEAN F. REGAL, Professor, Department of Pharmacology, School of Medicine, University of Minnesota at Duluth
    MARC SCHENKER, Professor, Epidemiology and Preventive Medicine, University of California at Davis School of Medicine
    PETER H. SCHUR, Professor of Medicine, Harvard Medical School, Brigham and Women’s Hospital, Boston
    FRANÇOISE SEILLIER-MOISEIWITSCH, Associate Professor, Department of Biostatistics, School of Public Health, University of North Carolina at Chapel Hill
    WALTER C. WILLETT, Professor and Chairman, Department of Nutrition, Harvard School of Public Health
    SCOTT L. ZEGER, Professor and Chair, Department of Biostatistics, Johns Hopkins University School of Public Health

    Staff:

    CAROLYN E. FULCO, Study Director
    CATHARYN T. LIVERMAN, Study Director
    SANDRA AU, Research Assistant
    KYSA CHRISTIE, Senior Project Assistant
    KATHLEEN STRATTON, Acting Director (through November 1999), Board on Health Promotion and Disease Prevention
    ROSE MARIE MARTINEZ, Director (from December 1999), Board on Health Promotion and Disease Prevention
     
  17. Ecoclimber

    Ecoclimber Senior Member

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    That's a lie. They have a contractual position. They have a policy position. Everyone is missing the crux of the argument. You can't see the forest for the trees. It's in my prior postings.
     
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  18. Ren

    Ren Primum Non Nocere

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    Something to consider regarding IoM's ME/CFS report:

    From Gulf War and Health: Volume 2. Insecticides and Solvents (2003)
    http://www.nap.edu/openbook.php?record_id=10628&page=R1

    "The committee placed its conclusions in categories of strength of evidence. Similar categories were used in Volume 1 of Gulf War and Health and in numerous other IOM studies." (p.R9)
     
  19. Ren

    Ren Primum Non Nocere

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    Hermes - May I ask in regard to, for example, your statement "Wesselys’ 1998 paper contains several important errors"; Does this analysis exist in print already? I'm only superficially familiar with some of Malcolm Hooper's critiqes of the Wessely school, and so I wondered if the errors you're referring to have already been discussed/addressed by academics, such as Hooper, who are also patient advocates. Thanks! Just want to understand what weight lies behind different statements.
     
  20. Ren

    Ren Primum Non Nocere

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    Just wanted to plant another seed, regarding the terms illness and disease.

    From Gulf War and Health: Volume 5. Infectious Diseases (2007) - (All bold added by me.)
    http://www.nap.edu/openbook.php?record_id=11765&page=1


    "Many veterans have believed that the illnesses were associated with their military service in southwest Asia during the war." (p.1)

    First, but without going into detail, I've seen enough sentences structured in the above manner to believe that it's a type of ad hominen - in the sense that dismissive authors often do not argue the science at hand but instead attack patients as having incorrect illness beliefs. But nevermind that for now.

    My main point is to call attention to use of the word illness (though others may already be long aware of this of course).

    But I mention illness as a problem word bc a very NICE-focused CFS report came out in Sweden in 2009. The report was in Swedish, but one section made a big tado about differences in meaning between the English words, "illness" and "disease."

    Basically, the Swedish report argued/explained that "disease" denotes a physical problem but "illness" can refer to a physical problem and/or psychological problem; so that disease is a strictly biomedical reference, while illness can be a biomedical reference and/or a biopsychosocial reference.

    My point though is that when writers use the term "illness" it may be loaded with implications that a normal reader might not fully understand. But such dialogue can perhaps be contributing to slowly bending literature toward a "Wesselian" world view. They use seeminly oridinary words, all the while they are redefining them - or using them in a psych-lingo sense which has a more-specific meaning than in ordinary speech.

    In short, be aware that "illness" can be a loaded term. WHO, as I recall, lists G93.3 as a disease of the nervous system. NOT an illness.

    --------------

    Fokusrapport Kroniskt Trötthetssyndrom (2009) - http://www.vardsamordning.sll.se/Global/Vardsamordning/Dokument/Publikationer/Fokusrapporter/FR_kroniskt_trotthetssyndrom_webb_091215.pdf (disease/illness, p.33 - referencing L. Eisenberg and G. Engel, with Engel identified by wiki as the father of the biopsychosocial model.)

    Statement/quote from wiki in reference to biopsychosocial model:

    "Some critics point out this question of distinction and a question of determination of the roles of illness and disease runs against the growing concept of the patient–medical tradesperson partnership or patient empowerment, as "biopsychosocial" becomes one more disingenuous euphemism for psychosomatic illness.[20] This may be exploited by medical insurance companies or government welfare departments eager to limit or deny access to medical and social care.[21]"

    http://en.wikipedia.org/wiki/Biopsychosocial_model
     
    Last edited: Nov 14, 2013
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