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Reflections on the Institute of Medicine's systemic exertion intolerance disease

Discussion in 'Latest ME/CFS Research' started by jimells, Sep 18, 2015.

  1. jimells

    jimells Senior Member

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    I'm constantly amazed at the number of studies from Dr Jason's team. He has over 300 hits on Pubmed. I haven't read the paper yet; I expect there will be some good stuff to discuss in there.
     
  2. jimells

    jimells Senior Member

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    I have seen this before, and I still don't understand what the problem is. Perhaps the higher rates of comorbidity are more accurate. How is that a problem?

    Maybe I'm just being dense, in which case I look forward to reading an explanation...
     
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  3. Valentijn

    Valentijn The Diabolic Logic

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    The theory is that if someone has too many "unexplained" symptoms, they actually have a psychosomatic or other psychiatric disorder.
     
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  4. alex3619

    alex3619 Senior Member

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    It might, instead of implying an issue with the SEID criteria, reflect a problem with psych criteria.
     
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  5. jimells

    jimells Senior Member

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    This must be based on this study, which is referenced by Jason et al:

    But this conclusion is pure B.S. First of all, the symptoms are not "medically explained" - they are symptoms of ME! Second, it ignores the possibility of a third factor causing both the psychiatric problems and "CFS" - something actually acknowledged by the Evil Dr Straus himself:

    And third, this is a clear attempt to redefine "CFS" (and therefore ME) as "chronic fatigue". The idea of excluding physical symptoms in order to weed out psychiatric symptoms from an alleged psychosomatic disorder is just completely bizarre and illogical.

    Reading the abstract again, I finally see that they mix "chronic fatigue syndrome" and "chronic fatigue" in such a way that we actually have no idea who or what they studied.

    So why is Jason et al citing this psuedo research?
     
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  6. jimells

    jimells Senior Member

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    These seem like amazing numbers to me. I wonder why they are published (and buried) in the middle of a review article. If the SEID criteria finds a fifth of college students to have our illness, doesn't that make it rather useless?
     
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  7. alex3619

    alex3619 Senior Member

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    Nearly one in five college students have PEM? NO. Tickbox criteria have to have been used, unless this figure is incorrect. This does point out how misuse of SEID, which I have written about before, could lead to misdiagnosis. However if we had some good way of identifying PEM I think the pecentages would drop dramatically, down to well under 1%.

    The Katon article concludes:
    This, to me, is a red flag of just how badly psychiatric criteria over-diagnose patients. According to at least one critic, and I have yet to see sold numbers here, nearly everyone in the population can be diagnosed with one or more psych disorders. There was a study some decades back, I think maybe in New York, where fit healthy adult males had a very high psych diagnosis rate using the criteria back then. (DSM II?). Those criteria were mostly much stricter than they are now.

    Its also the case that its hard to justify symptoms being used in the criteria of multiple disorders simultaneously. No wonder many psych get their diagnoses so stuffed up so often. Of course they will claim co-morbidity.

    However when a diagnostic clash occurs, you not only have to consider that the disease in question is wrong diagnosed, or is a co-morbidity, but that the benchmark you are using is flawed.
     
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  8. jimells

    jimells Senior Member

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    :eek::eek:

    Dr Jason doesn't think much about the new name, either:

    And to prove his point the article includes comments emailed to Dr Jason:

    Overall it's a very interesting report. It even touches the edges of the politics around the IOM report and the name change issue. It will be interesting to see how the research and advocacy communities respond to it.
     
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  9. jimells

    jimells Senior Member

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    I agree that can't possibly be the case. It's too bad the article doesn't address this directly. This seems to be unpublished data, or maybe I'm just not able to find the correct reference.

    I hope @ljason comes across this thread and has a chance to discuss the article with us.
     
  10. alkt

    alkt Senior Member

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    just a random thought do institutions want a name change so the rest of the world do not ever see the entire picture . in relation to how many people have been wrongly diagnosed . or treated with shocking levels of contempt by all the parties involved in denying that m.e was a known disease that has deliberately been swept under the carpet. by cdc and the insurance lobby. with the help of a lazy press.
     
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  11. alex3619

    alex3619 Senior Member

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    When we finally find the cause/s then we will most likely get a name change anyway. I thought SEID was premature, as was the IOM report. OR a name change might follow a diagnostic biomarker. One of the good things about SEID is that it uses "disease" rather than "syndrome". However the term ME does not label it a syndrome either. ME would have been a better term, but I think it would be immensely difficult to sell to health officials. SEID does partially bypass a lot of the nasty politics around ME, but not fully.
     
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  12. alex3619

    alex3619 Senior Member

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    I wonder if we should be labeling many so-called comorbid disorders as co-diagnoses, or even co-labels, rather than comorbidity. A diagnostic category is just a label.
     
    Last edited: Sep 19, 2015
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  13. Snookum96

    Snookum96 Senior Member

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    Interesting info...I'm finding however that I don't even have the energy anymore to point out how incorrect some stuff is. Seems the crap never ends. Kudos to those of you who have been correcting the misinformation for years and continue to do it.
     
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  14. panckage

    panckage Senior Member

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    Ideally a set of diagnostic criteria will uniquely identify a disease. Having criteria that has a high rate of co-morbidity with another disease fails to meaningful distinguish between the two.

    Eg. Cancer and tobacco have a high comorbidity. But does smoking cause cancer? Or does cancer cause smoking? Dumb example I know, but you get the point ;)
     
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  15. alex3619

    alex3619 Senior Member

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    @panckage, I have always used a weak association between obesity and tooth decay. Which causes the other? :confused: Sometimes a third possibility never occurs to people.
     
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  16. jimells

    jimells Senior Member

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    Basically, yes. All the apparent activity around criteria and names is intended to be a giant distraction from the fact that NIH has been captured by the insurance industry. The flurry of activity that resulted in the IOM and P2P fiascoes came right after Bob Miller managed to prod Obama into making a statement about our illness.

    There is enough rampant well-documented criminality throughout HHS to sink a ship, yet nobody even loses their job, never mind goes to prison or even, heaven forbid, actually change the policies. Jeannette Burmeister has many posts on her website that document FOIA violations (including perjury) and FACA violations (laws for the CFSAC). The Justice Department, the HHS Inspector General, none of these agencies are interested. So obviously the fix is in.

    The Romans kept control with bread and circuses. But all we get now is the circus. If we want bread, well, that's what dumpsters are for.
     
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  17. jimells

    jimells Senior Member

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    While pondering a reply I realized that maybe I misunderstand the term "comorbid". Imagine my surprise to learn that it is another amorphous medical term with multiple contradictory meanings:

    As @alex3619 discussed, "co-diagnoses" is probably more neutral with less hidden meaning than "comorbid".

    In any event, disease criteria still need to include patients that have multiple illnesses. If I have heart disease and diabetes, I need to have both identified and treated, whether both are caused by "metabolic syndrome", or if the heart disease is caused by smoking tobacco and the diabetes is inherited.

    To my mind, an ME criteria that includes many patients with psychiatric illness is only a problem if the patients don't actually have ME. Certainly, researchers may want to exclude psychiatric patients, but that is quite different from excluding patients from diagnosis and treatment in the clinic. And the SEID criteria is being sold specifically as a clinical definition, so far.

    One interesting aspect of studying this research is that no paper can be analyzed in isolation from the authors, their sponsoring institutions, their past work, and the overall political history of the illness. As a professional cynic and troublemaker, this comes naturally.

    But I can well imagine that folks who believe in the ideals of the scientific method and scientific objectivity might have difficulties analyzing research with such a jaundiced eye - a bit of cognitive dissonance, I should think. So I wonder how much research is accepted at face value because the alternative of acknowledging gross incompetence and fraud is just too awful - who wants to admit they were lied to and couldn't see through it?

    As for "Evidence Based Medicine" - how do those methods account for political bias while evaluating research quality and applicability? It's a sure bet the issue is never acknowledged to exist - because proponents would also have to acknowledge that the methodology itself can be twisted to suit political goals.
     
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  18. Dolphin

    Dolphin Senior Member

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  19. Dolphin

    Dolphin Senior Member

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    Yes, it's important to point out that clinical and research criteria can be different.

    I quite like the SEID criteria but as research criteria they would likely need exclusions (although I don't think the intention was ever that everyone who satisfied the criteria would be called SEID patients no matter what other diagnoses they might fit).
     
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  20. Dolphin

    Dolphin Senior Member

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    I'd say lots of people with prejudiced views would be quite happy for "chronic fatigue syndrome" to remain the main name. It doesn't suggest that serious an illness. And lots of people (perhaps esp. doctors) get fatigued but don't complain about it.
     
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