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August 8th - What is the one thing about suffering with severe ME that the world needs to know?
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IACFS International Conference Summary

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Bob, Oct 12, 2011.

  1. Bob

    Bob

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    fla likes this.
  2. Enid

    Enid Senior Member

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    Thanks for this Bob - it needed it's own thread. I particularly liked the reference "the notorious PACE" ......somebody should be embaressed here......out the Ark. The trouble with enteroviruses is that they are not effectively screened for here - my blood tests went through Virology revealing nothing apparently and yet I know the whole downward spiral originated in the gut rapidly passing to a polio like illness.
  3. ukxmrv

    ukxmrv Senior Member

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    Prof Mowbray at St Mary's was good on entroviruses but the research seemed to have died with his retirement and the asendence of the crowd behind the "notorious PACE".

    The VP1 test was used in the late 80's for ME patients but there wasn't much to treat us with then. Amantadine was tried.
  4. fla

    fla Senior Member

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    I saw the summary mentioned the METs at the anaerobic threshold for PWME is often extremely low (between 2-3). A quick google found that cancer survivors use a METs table for weekly/daily energy budgeting. This sounds like a good tool for PWME for pacing with less guesswork.
  5. Andrew

    Andrew Senior Member

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    Thanks for the link. It covered something I was trying to research.
  6. Bob

    Bob

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    I read this summary last night, and I noticed a few very significant mistakes in it.
    As far as my memory serves, there were mistakes particularly in relation to the ICC and to XMRV research.
    I don't want to read it again right now, and pick out the mistakes, but I just thought I'd mention it.

    If I get a sudden spurt of enthusiastic energy, I might go over it again and post the mistakes here.
  7. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    This is not quite right:

    "Currently CFS is classified under Symptoms and Signs, Malaise and Fatigue, and the Coalition proposes moving CFS to Diseases of the Nervous System. Post Viral Fatigue Syndrome is currently classified as Other Disorders of the Brain, and the Coalition proposes moving PVFS to Diseases of the Nervous System also."


    Suzy:PVFS is already proposed to be classified within ICD-10-CM under Chapter 5 Diseases of the Nervous System under "Other Disorders of brain".


    "ME is currently referred to as Benign Myalgic Encephalomyelitis and the Coalition proposes to redefine ME as Myalgic Encephalomyelitis (benign). The major point here is that ME is anything but benign to one who suffers with it, but the WHO and the NCHS insist on keeping the word benign because ME does not lead to imminent death. [Ed. note: perhaps non-fatal would be a better descriptor than benign!].

    "The proposals take CFS and PVFS out of the just fatigued category and separate them from psychological disorders that also cause fatigue; they would bring the USA into alignment with the WHO classifications already in effect in Canada and Germany; and they support the recommendation of our CFS Advisory Committee to the Department of Health and Human Services.

    "If asked to support the Coalition 4 ME/CFS, please give their proposals careful consideration!"
  8. Boule de feu

    Boule de feu Senior Member

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    I also read it last night. So grateful that Dr. Lapp took the time to write it.
    I enjoyed every minute of it.
  9. Bob

    Bob

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    I came across as a bit ungrateful in my previous post, but it was nice to read it.
    Cort is working on something as well, so there will be more to read.

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