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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. lnester7

    lnester7 Seven

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    @alex3619 is there anybody doing this compilation??? If so can I help??? Also what is the submission process and how do we go about getting this done if is not in the works???
    Izola likes this.
  2. alex3619

    alex3619 Senior Member

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    All good questions. I don't think anyone is doing this. It would take a team I think.
  3. Ren

    Ren Primum Non Nocere

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    Alex and Inester7 - just an idea (and perhaps you're already aware of this or find it's not suitable, etc) but...

    CDC has released two physician-training webinars, "Chronic Fatigue Syndrome: The Challenges in Primary Care" and ??, but if you google the first one, the second one should be there with it. The one I named at least - I believe - referenced specific studies (see slides) when talking about biological evidence points a/b/c/whatever, etc. Perhaps those studies might be helpful/useful - and if so, perhaps they'll carry more weight since they've been used in CDC physician-training webinars.

    P.S. I remember seeing an edited transcript option as well - so one doesn't have to watch / listen to the video to access what's said.:)
    Last edited: Nov 19, 2013
  4. Ren

    Ren Primum Non Nocere

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    Also regarding text/research selection...

    Two main thoughts - and this is in regard to Gulf War and Health Treatment for Multisymptom Illness (2013) - I'll call this text: GW&H 2013, for short.

    1) I've noticed that in the above-named text, the GW&H 2013 committee references work done by previous Gulf-War-and-Health committees.

    So, I'm not sure that any given committee critically evaluates the conclusions reached by a previous committee. If this is true - that any given committee unquestioningly accepts the work of a previous committee - then "evidence" gathered for GW&H 2013, for exmple, automatically includes "evidence" gathered in any previous IOM report.

    It seems then that IOM committess are not independant, but very-much interdependant. The names of their reports even announce this. GW&H "Volume" 1, 2, 3, etc. "Volume - one book of a related set or series." It could be argued that the subject, GW&H, makes these texts related. But I think the key is that the texts are interdependant.

    Maybe a question for IOM should now be, "Will the ME/CFS committee use GW&H committee conclusions to form its definition of CFS?"


    2) Quotes from GW&H 2013:

    "The committee conducted a systematic review of treatments for CMI, following guidance in... In January 2012, a number of reference databases... were searched by using terms relevant to treatment for CMI... earch terms included CMI, Gulf War syndrome, Gulf War illness, unexplained illness, undiagnosed illnesses, undiagnosed symptoms, medically unexplained symptoms, somatoform disorder, fatigue, pain, concentration, memory, headaches, and gastrointestinal symptoms. In addition to consideration for the systematic review, the search identified relevant resources for use in other parts of the report." (p.30-31 / p.53-54 pdf)

    How and by whom were these search terms determined??

    Page 31 (p.53 pdf) also has "Selection of Evidence" info. (I haven't read through all of this, though I already have more questions.)

    A lot of this - the text itself plus all the good comments others have made above regarding evidence selection, etc. is new for me and will take a while to absorb. But it (the Selection of Evidence) may be interesting/useful to those who are far ahead in their understanding/knowledge of all that's at hand / in play. Wish my brain lasted longer...
    Last edited: Nov 19, 2013
  5. alex3619

    alex3619 Senior Member

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    Its a place to start, but the CDC love to ignore most of it, they seem in denial sometimes.
  6. Ren

    Ren Primum Non Nocere

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    Soviet "sluggish schizophrenia." Wiki: "...Andrei Snezhnesvky designed the Soviet model of schizophrenia (and this diagnosis) to make political dissent a mental illness."

    Wessely school = dissent from Wessely school is a mental illness. ??!!
    Ruthie24 and Roy S like this.
  7. alex3619

    alex3619 Senior Member

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    Psychotherapy has all sorts of names for patients who disagree with the therapist.
    Ruthie24, SOC, beaker and 1 other person like this.
  8. Ecoclimber

    Ecoclimber Senior Member

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    If you are resistance to treatment you fall under another DSMV code. As to the research articles, I don't know who presents the evidence. There is like more than 4000 research artidcle.. That would be large undertaking. You would think that it would all be compiled somewhere at some NIH agency or advocacy group. If not, we should have these available as a check sheet. It would be great Inester7 to be willing to take this on, Thanks

    ME/CFS Meeting
    HillaryJohnson question for Ruscetti. Are ppl at NCI still showing interest in connection btw ME and cancer? Ruscetti: Fauci, Collins, Varmus have NO interest in this disease!!! Sequestration will make things worse. Unpopular diseases will have an even harder time to get money. Private foundations is where it's at.




    Eco
  9. Ren

    Ren Primum Non Nocere

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    Subject: ME info reference list from neurologist: http://www.gotahalsan.se/sv/myalgisk-encefalomyelit-referenser/

    In case anyone can use this info: There is a private (no access through the State tax-funded care) neurologist (Anders Österberg) in Sweden who specializes in ME. This part of his clinic's webpage (in Swedish http://www.gotahalsan.se/sv/myalgisk-encefalomyelit/) gives an overview of ME - I haven't really looked at it in sometime, but believe it's pretty basic. I mention it though for the overview's reference list, here and in the subject line above: (http://www.gotahalsan.se/sv/myalgisk-encefalomyelit-referenser/). To my understanding, Österberg's view on CBT is as a means to assist with coping and learn about pacing - not as a so-called cure for mistaken illness beliefs.

    Anyway, thought it might be useful and/or interesting to see what one neurologist (on "our" team) has used to assemble/inform an overview of ME basics. (Beyond the basics, I'm not too informed on the science of ME - as, like so many, a lot of energy goes into basic existing plus what feels like a fight-to-the-death just to learn about and manage some access to doctors such as Österberg.)
    justinreilly likes this.
  10. alex3619

    alex3619 Senior Member

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    There are 6142 papers currently on PubMed. PubMed does not list all the papers available. Of those papers it is not clear how many can inform a diagnostic review. It would be a smallish subset. So I don't know that we really have a clue as to how many papers there are. However, unless only a basic search is done then my guess is there would be at least 10,000 papers to at least look at. That cannot be done fast without using arbitrary search criteria.

    If you use the search parameters "chronic fatigue syndrome diagnosis" on PubMed you get 3407 results.

    My concern is that we need to pick the most influential papers (biomedical and psychogenic) and be ready to submit commentary on their evidence quality.

    PS Use "biomarker" instead of diagnosis and you get 187 results on PubMed.
    Last edited: Nov 21, 2013
    justinreilly likes this.
  11. Mark

    Mark Acting CEO

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    Good point: very important job and needs doing anyway; that would be useful in many contexts. Any idea how to crowdsource such a huge project on the forums?
  12. alex3619

    alex3619 Senior Member

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    I haven't really begun to think about crowdsourcing. Obviously that is necessary. One of the issues is that we may need the full paper, and so we need people who are particularly science literate for that part. We need people to help organize, particularly on the IT side. We may need people to help compile a database or something similar, perhaps just a large document if its properly organized. That might require new skills. Now this is only the case if we want to do the full thing.

    As I suggested on another thread, if we keep this very very short, and just use the major papers, and keep commentaries to one to three sentences per point (though the PACE trial for example will have many points) and perhaps references to a source if its not the paper itself, then we can minimize the demand on the community, and later we can expand on this starting project. By just bullet pointing and referring to a source we can get away from detailed commentary, the IOM panel can look up our sources if they need to.

    On biomarkers at the least we would need papers covering NK cell function, heart/cardiovascular function, dysautonomia, exercise function, toxins and pathogens. Ideally we want paper where over half of us have a problem (e.g. 83% have gut tissue enteroviruses) and then we can note if its been replicated etc. Due to heterogeneity issues we do not need 95% prevalence of issues. We also need to note which definition was used, and then we can discuss heterogeneity of existing definitions.

    We also need the three PACE papers, but in comparison to that we need the Cochrane review, the large govt. study in Belgium etc., plus FINE and every study showing objective physical evidence that contradicts the CBT/GET claims.

    We also need to use a rating scale. If we know which the IOM favours, we should use that. It not, then perhaps use the Cochrane Collaboration scale. Then we all need to rate papers on the same scale.

    There are already compiled lists around of important papers, however some have focus on just biomedical, and we need to rate psychiatric stuff as well. Its important we do not let them rate psychogenic papers at a premium level when they do not warrant it, at least not without our having made an input.

    These are just my first thoughts.

    PS Any studies comparing definitions are also important, including Jason's.

    PPS Papers on subgroups including cluster outbreaks such as Incline Village, and syndromes like EDS may need some papers as well.

    PPPS Perhaps we should formalize an evidence ranking based on diagnostic criteria as follows (or similar):

    A. CCC or ICC. ICC is higher in terms of being the most recent, but CCC is higher in terms of being the most used and understood. Ramsay should probalbly also be there, as should other ME criteria, but I think this needs some discussion. ME definitions have the advantage of less heterogeneity, as do any papers on cluster outbreaks.

    B. Fukuda.

    C. Empiric/Reeves.

    D. Australian.

    E. Oxford.

    F. No definition.

    As an alternative, just list the definition, then have a separate ranking/discussion/comparison per definition. This might be a better idea.
    Last edited: Nov 22, 2013
    justinreilly likes this.
  13. alex3619

    alex3619 Senior Member

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    Another option I have been thinking about is independent submissions. If we provide guidelines on how to rate papers, then people can pick their favourites, or those they hate the most, and rate them for their own submission.
  14. Mark

    Mark Acting CEO

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    OK...so first jobs are to collect together a 'list of lists' (of research papers) that currently exist, then start going through those lists and highlighting what you/we think are the key papers. I do think this kind of thing can be done relatively quickly using the knowledge of forum members, if they participate and if it's fairly well organised - but it does need somebody to organise it. We could set up a private group or forum for people to do that, but that would first require volunteers to join the group, so I suggest that a public thread may be a more feasible starting point. If somebody wants to organise that exercise, we'll help out technically where we can, but I'm afraid I have too much I need to get through in the next month to be able to do any more than make this suggestion and hope that somebody starts threads to organise this.
  15. Ecoclimber

    Ecoclimber Senior Member

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    There is a caveat to this. You might have a level 1 research paper with biomarkers from some unknown level 4 scientists and a tier 4 research lab in some other third world country published by their own expense or the lower tier publishing house that is not going to gain much credence for acceptance. You have to assign them an appropriate grade.

    The main view among the scientific research field is top researchers at top researcher labs at top universities that a peer reviewed in only the Top Tier Research Journals. You can ask Jonathan Edwards as he alluded to it awhile back in his postings. You might have to mark Level 1 at lower tier with a special marking to collerate the lower prestige difference differences. Natlelson CSF study is a good bio, Lights study on gene expression is another, etc. A lot of work to do. If it is 10000 you may need a 100 people.
  16. alex3619

    alex3619 Senior Member

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    EBM presumes competently peer reviewed published papers. If there is reason to doubt any of that, then of course a paper would be downgraded. However that is very hard to evaluate, and is likely to be evaluated differently by different people.

    Since I am envisioning doing this only for 30 or so papers, at least initially, then it wont take hundreds of people to do it. If we can find just ten people, then that's three papers each. Then we post a how-to guide, and put it out there for others to use, and then we accept submissions. I do think though that we need at least two raters per paper, and if they disagree then we need three more to decide, or something like that. So the worst case is about 20 people. If we ask for help on other locations, including Facebook, I think its doable.

    Initially it will be a small number of papers. Over time it will grow. That initial number has to be focused on the IOM, both for our good biomarker and diagnostic research, and against over-hyped psychogenic papers. However in the case of psychogenic papers (actually, all papers) I think we need to look very very carefully with a view to not being biased but objective. If we clearly show biased interpretations it will count against us. I think the objective problems with psychogenic papers are sufficient to downgrade them a lot compared to their claim of being Gold Standard or evidence-based.
    justinreilly likes this.
  17. Andrew

    Andrew Senior Member

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    One thing to keep in mind is the contract says to develop a criteria. That means studies that demonstrate symptoms.
    For example,

    PEM: Pacific lab study, the Light gene expression study, the FDA patient centered paper,
    OI: ??
    etc
    Perhaps the study of Tahoe cohort.

    I know I already Tahoe and FDA. Maybe we can create a thread where we compile lists and ask for comment, then see who has them or can find them. If there is overlap, no harm done.

    Frankly, I think the whole project is ridiculous. You can't make a criteria from reading studies. But, I guess we have to do this if we can't stop it.
    justinreilly and Snow Leopard like this.
  18. lnester7

    lnester7 Seven

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    I volunteer to help but I need very clear direction on what to do and how to do it. ALso, I guess we can first get the list with the 30 then split the work, so we do not review the same things.

    Who is drivng this effort right now??? I can help with project planing.
  19. Andrew

    Andrew Senior Member

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    I won't be able to do anything until the end of next week. I'm still writing letters and trying to prepare a CFSAC talk.
  20. Ren

    Ren Primum Non Nocere

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    Just an fyi, should it be helpful to those with research know-how:

    The most recent Gulf-War-and-Health text (2013) mentions "methodologic flaws" in the Summary (p.8), and then a search for "methodologic flaws" brings up p.191 and seems little different from that info presented in the Summary. But should this assist in understanding how IOM thinks... http://www.nap.edu/openbook.php?record_id=13539&page=191

    "Many of the studies of treatments for CMI reviewed by the committee had methodologic flaws that limited their usefulness for the committee’s evaluation... (p.191) See also "Recommendation."

    Examples of methodologic and reporting guidelines include those set forth by such organizations as the Agency for Healthcare Research and Quality and the Institute of Medicine and in such other efforts as the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement and the Consolidated Standards of Reporting Trials statement. On the basis of its assessment of the evidence on treatments for CMI, the committee found that several treatments and treatment approaches may be potentially useful for CMI. However, evidence sufficient to support a
    conclusion on their effectiveness is lacking.... (p.191) See also "Recommendation."


    And as an additional note regarding info found on this same page:

    "Several of the above-mentioned interventions are in the area of complementary and alternative medicine and the VA should consider coordinating future research efforts with the National Institutes of Health’s National Center for Complementary and Alternative Medicine." (p.191)

    As posted earlier elsewhere, the Gulf-War-and-Health Treatment for Chronic Multisymptom Illness (2013) committee included Wayne Jonas (http://www.samueliinstitute.org/about-us/wayne-b-jonas-md) who "served as the director of the Office of Alternative Medicine at the National Institutes of Health from 1995 to 1999; before that, he was the director of the Medical Research Fellowship of the Walter Reed Army Institute of Research. He served for 24 years as an Army medical officer..." (p.199).

    (I hope Dr. Jonas isn't of the Men who Stare at Goats school. Just saying... )

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