Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
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£208,000 of taxpayers' money for a group incl. Peter White & Rona Moss-Morris to review MUS evidence

Discussion in 'General ME/CFS News' started by Dolphin, Sep 7, 2015.

  1. Valentijn

    Valentijn Senior Member

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    The one with the goofy hair has to be Wessely. So White's the bald one with no eyes? :p
     
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  2. Snow Leopard

    Snow Leopard Hibernating

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    Sadly their review is mostly going to be a case of: Garbage in -> Garbage out
     
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  3. justy

    justy Donate Advocate Demonstrate

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    I like the idea that you get a diagnosis of MUS 'after testing'

    I was ill for 20 years before it was found I had -

    EDS III - dx from the NHS after hassling my GP for SEVEN YEARS to help me.

    Mitral Valve Prolapse with regurgitation - from a private practitioner after NHS failed to refer me.

    Mast Cell Activation Disease - I had to pay two separate allergy/immunology specialists to test me for this who do wok in the NHS, but I couldn't see them as the wait list was 2 years in the first case and never in the second as im not allowed to see Drs over the border in England.

    Chronic Bacterial infections x 3 - had to pay privately to find this out, despite on of them being Cpn and me having a history of pneumonias, and lung fibrosis and the literature being chocked full of chronic Cpn causing long term breathing issues etc.

    Positive Anti Nuclear antibodies - speckled, private testing - NHS still not interested.

    Ongoing chronic anaemia - Gp throws tablets at it for past 5 years - never been investigated.

    So do I still have MUS, according to White et al?
     
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  4. Sasha

    Sasha Fine, thank you

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    That would make an excellent letter to a medical journal, @justy.
     
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  5. worldbackwards

    worldbackwards Senior Member

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    To be fair, so would that picture of The Muppets.
     
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  6. A.B.

    A.B. Senior Member

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    They would probably argue that you do indeed have MUS because the identified abnormalities are not sufficient to explain your level of disability. I've seen a case report of a woman that died from a rapidly progressing brain disease and the psychiatrists still argued that they had been right in diagnosing psychosomatic disorder, using just this "logic". :bang-head:

    Somebody with vested interests in portraying MUS as psychosomatic will be the last to admit that there is a biological basis to all these health problems.
     
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  7. Woolie

    Woolie Senior Member

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    Yes, that's how it seems to work. Any symptoms of any illness that do not correlate with a known biological marker "belong" to the psychoquacks. And they won't give them up easily. This includes fatigue when it occurs in serious illnesses like MS and lupus, because the fatigue isn't predicted by any of the standard disease markers.

    Its like they are reluctant to give up any of their territory to real medicine - and do so only when they absolutely have to!
     
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  8. Woolie

    Woolie Senior Member

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    Oh, and here's another fantastic one. Peptic ulcers, once the domain of psychoquackery (believed to be "stress induced"), have since been found to be caused by a bacterium: heliobacter pylori. Took a long time for us to work this out, there was so much biopsychosocial bullshit clouding the picture for so long.

    You would think that finding an actual bacterial cause would stop the psychonutters dead in their tracks... but no! Now they say that the stress causes the bacteria to multiply!!!!!!
    see: Levenstein, S. (1998). Stress and peptic ulcer: life beyond Helicobacter. BMJ: British Medical Journal (no less!)
     
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  9. worldbackwards

    worldbackwards Senior Member

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  10. A.B.

    A.B. Senior Member

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  11. Woolie

    Woolie Senior Member

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    You got it, @worldbackwards, that's exactly what I predict will happen.

    There are two ways they will spin this: first, they'll simply say that Rtiux responders are not "real" CFS, they were accidentally included in the pile.. but now we have the capabaiity to weed them out.... so we can focus on the "real" cases (any poor sod that doesn't respond to Ritux, or has never had the chance to try it)

    Or second, they will say that despite the evidence that biological factor X may play a role, "this is insufficent to explain the severe symptomatology of some patients... clearly, the disease reflects a complex interaction of biological and psychological factors" (translation: we're only going to focus on the psychological factors, we just put the word "biological" in there because we can no longer deny that bit).
     
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  12. Woolie

    Woolie Senior Member

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    Yea, @A.B.

    I like to think of it as a bit like magic.

    In some early societies, any sickness that wasn't understood was thought to be due to witchcraft or other kinds of magic.. of course, magic and witchcraft are mysterious and unknowable, so you can't hope to ever explain them

    ... now instead we attribute these ill-understood sicknesses to the "the power of the mind"... again, so all magical, powerful and unknowable, we can't hope to fully understand it so there's no need to really try!!
     
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  13. Chrisb

    Chrisb Senior Member

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    Psychological stress probably functions
    most often as a cofactor with H pylori. It may act by
    stimulating the production of gastric acid or by
    promoting behaviour that causes a risk to health.
    Unravelling the aetiology of peptic ulcer will make an
    important contribution to the biopsychosocial model
    of disease

    You will note the rigorous thinking that has into Levenstein's work. Who educates these people? "Probably" and "may" are so clear in establishing causation. Whatever David Hulme may have had to say on that subject.
     
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  14. A.B.

    A.B. Senior Member

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    On the other hand the Rituximab results could be so impressive that CFS suddenly becomes a hot area of research. Psychobabblers will suddenly have to deal with criticism from other researchers and doctors. Peer review might actually start working. Things could change very quickly and radically.
     
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  15. worldbackwards

    worldbackwards Senior Member

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    [​IMG]
     
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  16. Chrisb

    Chrisb Senior Member

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    I propose that worldbackwards be appointed the honorary Terry Gilliam of this forum. Now that the original is dead, or not, as the case may be.
     
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  17. Dolphin

    Dolphin Senior Member

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  18. Dolphin

    Dolphin Senior Member

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    Somebody suggested we should complain that some of the reviewers clearly have a bias e.g. Peter White, Rona Moss-Morris and there isn't anyone to counterbalance such views.
     
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  19. jimells

    jimells Senior Member

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    While reading the abstract I was thinking that an honest investigator might consider the role of misdiagnosis. But then I remembered that the psychobabblers also have a religious faith in the "Infallibility of Physicians".
     
  20. alex3619

    alex3619 Senior Member

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    Actually they knew this in the 19th century. It took 108 years before Barry Marshal and his colleague ( I keep forgetting his name) proved it to a modern standard. In the meantime the science had to fight psychoquackery, and was ignored and buried. To be fair though the nineteenth century finding was in German, and they didn't fully characterize the bacteria. I wrote a blog on this.

    PS Not to mention the huge pressure by drug companies to not do this kind of research, and once published to not mention it at conferences they sponsored.
     
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