Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
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CFSAC recommendations following August 2015 meeting

Discussion in 'General ME/CFS News' started by Dolphin, Sep 13, 2015.

  1. Dolphin

    Dolphin Senior Member

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    I see these were posted elsewhere (item #272 in a thread). I thought I'd give them their own thread so they don't get missed:

     
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  2. A.B.

    A.B. Senior Member

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    The first document is pretty good. I got slightly emotional while reading it. It looks like a serious and sincere effort to improve the situation for patients. Some fairly specific recommendations on how to organize research are made. I can't really judge these but being more specific than asking for "more research" seems like a good thing. The majority of the recommendations should be uncontroversial, however, they do recommend the SEID criteria to be used in clinical practice (with CCC for research).
     
    Last edited: Sep 13, 2015
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  3. Sean

    Sean Senior Member

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    :thumbsup:
     
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  4. Sean

    Sean Senior Member

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    Good point.
     
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  5. Sean

    Sean Senior Member

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    Damn good start. I approve.

    Nailed it.
     
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  6. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Haven't read it all yet, but this is fabulous! $250,000,000!
     
  7. Snow Leopard

    Snow Leopard Hibernating

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    South Australia
    Asking for $250 million sounds nice, but on the other side of the coin, they will be wondering what it would be spent on.

    I think we need to be more explicit and say that we need the NIH to take leadership, to create specialist research centres, to build research capacity so that there are researchers applying for grants for high quality research.

    Right now we are stuck in a catch-22, not much interest and most research grants are knocked back or not applied for in the first place, considered to be too speculative.
     
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  8. Sean

    Sean Senior Member

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    Ah, Snow Leopard, give me 24 hours of dreaming. I've earned it. :woot:
     
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  9. Denise

    Denise Senior Member

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    Thanks @Dolphin for creating the thread.
     
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  10. Sean

    Sean Senior Member

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    I take your point that it is not as simple as just switching on the money flow, and that great care needs to be taken to make sure the money is well spent, especially in this field with it shitty history of dodgy research.
     
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  11. halcyon

    halcyon Senior Member

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    I thought the recommendations were pretty decent. I'm happy to see they didn't agree with creating a new ICD code and recommended G93.3 until there is a good reason not to. It's unfortunate that they couldn't come to a consensus on the name, but recommending G93.3 is about as close as you can get to recommending calling it ME without actually doing so.

    My favorite part?
    Buhbye PACE trial.
     
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  12. SOC

    SOC

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    If only.... Sigh...
     
  13. halcyon

    halcyon Senior Member

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    I know, I know. These are just CFSAC recommendations which historically end up in the HHS circular file. I'm slightly more positive about these recommendations though because they are piggybacked on 3 federally funded reports. Perhaps these can't be so easily ignored.
     
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  14. SOC

    SOC

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    I agree. I just don't think the UK authorities are going to give up on PACE that easily based on a US document. Quite a bit of jingoism going on over there.
     
  15. halcyon

    halcyon Senior Member

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    Oh of course. I meant mostly in the US, but if we discredit it here that's a start.
     

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