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Science Based Medicine - IOM Recommends Replacing CFS with SEID

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Bob, Mar 3, 2015.

  1. Bob

    Bob

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    I can't see this posted on the forum already - apologies if it is.
    It's a terrible article, but there are some good responses in the comments section...


    IOM Recommends Replacing CFS with SEID
    Harriet Hall
    March 3, 2015
    Science Based Medicine
    http://www.sciencebasedmedicine.org/iom-recommends-replacing-cfs-with-seid/

    Extract:
     
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  2. user9876

    user9876 Senior Member

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    I'm very unimpressed with the quality of Hall's arguments to support her statements.
     
  3. Valentijn

    Valentijn Senior Member

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    "Yuppie Flu" is a slur, not a name.

    Basically a very nasty piece of writing, even from the start. They ignore solid science, such as the 2-day CPET, in order to raise doubts about the reality or cause of symptoms.

    I guess pseudo-science sites are now where the "mean girls" go after finishing their education.
     
    Last edited: Mar 4, 2015
  4. alex3619

    alex3619 Senior Member

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    I just wrote this reply, awaiting moderation: (oops, typos)

    Alex Young aka alex3619 says: Your comment is awaiting moderation.
    March 4, 2015 at 6:24 am
    It would be really nice if people would read the report before jumping to conclusions. I am still slowly working my way through it, though I skimmed it very early.

    NONE of the primary diagnostic criteria are entirely subjective. NONE.

    Decline in activity can be measured with an actometer. If you suspect malingering make them wear it for months. The results might shock you.

    Post exertional malaise has been technologically measurable since 1949! Some doctors began using a test for this in the 80s. In 2007 it was formally used in a study designed to test its userfulness. It works. That test is CPET, or cardiopulmonary exercise test. Its problematic as it induces a crash in health and then measures it.

    Half of all CFS patients show disability on a straight test, but that could be just deconditioning, right? A second test tells the story. Run the test a day later and something happens that is not known to occur in any other conddition. Exercise capacity crashes, sometimes dramatically. Deconditioning does not explain this, unless you can totally decondition in only hours. No other disease has this pattern, although one HIV patient tested had the same issue, but they may have what the IOM want to call SEID as well as HIV.

    There is no study, ZERO, that shows that exercise can fix this. There is a lot of anecdotal evidence from exercise physiologists (primarily now at Workwell Foundation), that show aerobic training makes this worse, not better. They are shifting focus to strength training in a hope this will alleviate the problem a little.

    Sleep problems are all over the place in this condition. It is unlikely you will find a single problem in all, but most have identifiable sleep problems from a sleep study. The real thing though is that sleep does not help the exertional crash. Indeed, the two day CPET shows that after a night of sleep between exercise patient’s are worse, not improved.

    Orthostatic intolerance has been measurable using a tilt table test, 1940 technology.

    Cognitive difficulties are measurable using extensive cognitive batteries and often qEEG. qEEG is a 1946 technology, but its probably only been useful recently because of modern sophisticated computer technology. Most patients show highly problematic brain function using qEEG.

    Arguments that this is depression long been debunked. Arguments that exercise helps are debunked. Arguments that this is deconditioning are debunked. Arguments that there are no tests are debunked – there are no tests for causation, but there are tests for the major pathophysiology.

    There are major hormonal and metabolic changes post activity that are measurable. Its now the case that a substantive part of the pathophysiology, and symptoms, are explained. Causation is still elusive, as is effective treatment, but the most effective treatment in use to date is antivirals, a point I can elaborate on if needed. This is from the published science, but also from a study about to be published in which antivirals were very very successful. From a scientific perspective this does not prove a virus causes this, as antivirals have other physiological effects and the science needs to continue. Even before this large RCT, antivirals produced results an entire order of magnitude better than other options.

    There is currently a phase 3 clinical trial of Rituximab that had good results in phase 2.

    Read the science, not the Cliffnotes version, and read the studies not commentaries from people who have not read the studies.

    Reply
     
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  5. barbc56

    barbc56 Senior Member

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    Very disappointing. It looks like the blog was written rather quickly without a lot of thought put into it. She keeps saying that she wasn't implying this or that, but it sure seemed like she was. I would love to give her the benefit of the doubt as Ive read a lot of other things she's written but in this blog she has missed the point of the IOM committee and relied on stock phrases which sound defensive and offensive.

    I do agree, but only in part with her comment on fake diseases but it is only human nature to try and find a label for something which is causing disturbing symptoms when there is lack of knowledge of what is going on. The answer is not blaming the patient's but looking into what part the nature of a condition plays into this.

    Some good comments.

    Barb
     
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  6. Sean

    Sean Senior Member

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    Science Bereft Medicine.
     
  7. Aurator

    Aurator Senior Member

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    I always took the name Science Based Medicine as cryptic self-deprecation, on the basis that many films that get made, for example, are "based on a true story", yet end up being a travesty of the facts.
     
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  8. barbc56

    barbc56 Senior Member

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    I read the blog every morning after I come here, of course. ;) For me, a very credible site packed with valuable information.

    Even with the best of blogs, I can disagree. But instead of name calling the best defense is facts. Even if it doesn't appear to change things. But maybe over time, who knows?

    Barb
     
  9. adreno

    adreno PR activist

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    If she looks into every subject with this much rigour, it surely must be.
     
  10. Bob

    Bob

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    Someone called Bob has posted comments after the blog. I just want to clarify that it isn't me, in case anyone was wondering. I haven't posted any comments.
     
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  11. barbc56

    barbc56 Senior Member

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    I wondered. Either way, they were good comments.;)
    Barb

    If I remember correctly.
     

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