Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Extraordinary NIH ME/CFS study may be most comprehensive & in-depth yet

Discussion in 'Active Clinical Studies' started by Simon, Mar 3, 2016.

  1. Simon

    Simon

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    My #MEAction blog on the many good points of the planned NIH ME/CFS study
    Extraordinary NIH ME/CFS study may be most comprehensive and in-depth ever | #MEAction

    There are still concerns, but also some deeply impressive science that could make a big difference to patients.

    Brief version
     
    Last edited: Mar 3, 2016
    leela, PatJ, Esther12 and 31 others like this.
  2. Sasha

    Sasha Fine, thank you

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    This is a terrific article and I highly recommend people read it!

    For all the concerns about the potential for the study to have psychogenic aspects - and I share those concerns - it looks very impressive overall.
     
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  3. Sean

    Sean Senior Member

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    :):):)
     
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  4. skipskip30

    skipskip30 Senior Member

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    Sounds excellent. Theres certainly some concerns but overall it sounds like a great study.
     
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  5. Sasha

    Sasha Fine, thank you

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    A big thing that makes me optimistic is that Nath expressly says that the end goal is immunomodulatory agents.

    I'm very, very excited about this study but I'd be happier if I could be very, very excited without that added edge of fear that the psychogenic bolt-on engenders.

    The sooner that all that stuff gets scraped off, the better.
     
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  6. Marco

    Marco Grrrrrrr!

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    An interesting and optimistic review Simon (and I'm all for optimism).

    What was new for me was the whole body energy measurement which I've long thought should show up any problem with energy metabolism.

    All in all it strikes me (small population aside) as a well considered study.
     
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  7. Simon

    Simon

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    I think it will be particularly interesting when they look at what happens after exercise.

    Btw, to measure energy when people are resting, they put them in a sealed room - like this
    SA’s open-source ‘metabolic chamber’ | TechCentral
    [​IMG]

    Sealed means everything in and out tracked - food in, food waste products out as well as oxygen consumed and carbon dioxide released, water etc. Don't know how much of this the NIH will be doing in this study
     
    Last edited: Mar 4, 2016
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  8. Sasha

    Sasha Fine, thank you

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    And this from a dinosaur in a straw hat.

    What the heck has happened to your avatar, Marco?
     
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  9. Marco

    Marco Grrrrrrr!

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    D'ya like him?

    Just felt like a little change.
     
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  10. Sasha

    Sasha Fine, thank you

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    I do like him, actually - he's smiling. :)
     
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  11. Bob

    Bob

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  12. duncan

    duncan Senior Member

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    The explanations attributed to Nash for the inclusion of Lyme and FMD control groups do not strike me as very convincing.

    These are potentially dangerous controls.
     
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  13. Valentijn

    Valentijn Senior Member

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    Anyone who claims the FMD group is "well-defined" and "clearly psychological" has no idea what they are talking about, or they are completely full of it. These are useless control groups designed to cause confusion and reduce the statistical power of the study to help create a null result. Hopefully those who are running the study will rectify the situation.
     
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  14. Sasha

    Sasha Fine, thank you

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    http://www.meaction.net/2016/03/03/...-may-be-most-comprehensive-and-in-depth-ever/

    I still don't see the relevance.
     
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  15. Bob

    Bob

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    Their thoughts about FMD seem contradictory to me. On the one hand they're clearly saying that it's a psychological disorder but on the other hand they're saying that the brain scans show that the patient is intending to exert muscle control but failing to exert control, which suggests its not psychological, but neurological. Perhaps I've misunderstood, but everything they say about somatoform disorders seems to be contradictory. I've no idea what they're talking about when they say: "Contrasting that with brain imaging pre- and post exercise challenge could be illuminating."
     
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  16. Sean

    Sean Senior Member

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    I'm not satisfied with the FMD answer either.
     
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  17. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    The FMD label is baseless. Just as ME as psychological illness is baseless. Both labels are harmful.

    I kind of feel complicit in the harming of so-called FMD patients - who in all likelihood have a neurological illness - if they are controls.

    A question:
    Is in acquiescing to their inclusion (and unwarranted psychologizing of their physical symptoms) as a control group a sort of a tacit agreement that 'those' people have a psych problem?
     
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  18. Esther12

    Esther12 Senior Member

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    It depends what is meant by 'psychological' though. People with depression can't just choose to switch it off. Part of the problem is that people seem to use 'psychological' to mean all sorts of things.

    With some Functional Movement Disorders aren't there test which are meant to show that people's paralysis is driven by their expectations? I don't know how good they are, and I've also seen criticism of them too.

    https://en.wikipedia.org/wiki/Hoover's_sign_(leg_paresis)

    I don't know enough about this stuff to really say.
     
  19. Simon

    Simon

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    Thank you, NIH, for listening to patient concerns.


    edit: link should now work

    Hopefully they will retain a study group of 100 and re-allocate those 20 FMD controls slots to other groups (make bigger, or bring in a new control group - I have no more information).
     
    Last edited: Mar 6, 2016
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  20. duncan

    duncan Senior Member

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    The NIH appears to have responded to patient outcries concerning one issue in an appropriate manner.

    It remains to be seen what they will do with the resources, e.g., patients, allocated to the FMD control group, just as it remains to be seen how they will handle other issues brought up by patients.
     
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