The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

Next CFSAC Meeting - August 18th & 19th, 2015

Discussion in 'Action Alerts and Advocacy' started by Nielk, Jul 20, 2015.

  1. Sasha

    Sasha Fine, thank you

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    Is it also big news that she stayed for two days? I seem to remember that the NIH rep used to shove off as soon as they'd given their update, but do I have that wrong?
     
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  2. lnester7

    lnester7 Seven

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    CFS should be called: Mizaru or Mikizaru (all 3)
    In honor to all the ignorance we have suffered. Like the 3 monkeys.

    The three monkeys are Mizaru, covering his eyes, who sees no evil; Kikazaru, covering his ears, who hears no evil; and Iwazaru, covering his mouth, who speaks no evil.
     
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  3. shannah

    shannah Senior Member

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    I burst out laughing when I heard this. A 5 year old recommendation buried along with dozens, probably hundreds more not acted upon. She obviously must have looked this up before the meeting to speak it out so freely.

    The crazy part is, she actually made this statement with a straight face. I'd have thought one would be embarrassed to bring that up or at the very least, speak it out rather sheepishly.

    Honestly, if you can't make a decision after 5 years about a name the rest of the world has been using for years before that, and want to keep consistency with that 5 year old recommendation that's going nowhere, that's very telling, pathetic state of affairs.
     
  4. Bob

    Bob

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  5. jimells

    jimells Senior Member

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    I have a vague recollection that the name "ME/CFS" came out of yet another committee-based naming process that had nothing to do with CFSAC. There have been so many of these naming and definition committees that it is near impossible to keep them all straight.

    Although NIH seems to mostly use "ME/CFS" recent CDC published studies still use "chronic fatigue syndrome". So HHS has not really adopted "ME/CFS" across all its agencies.
     
  6. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    http://www.meaction.net/2015/08/19/nih-mecfs-research-applications-low-quality/

    Janet Dafoe has put out an appropriately scathing reply to the suggestion that ME applications are being turned down due to "low quality":


    She has also added in the comment section:

     
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  7. Denise

    Denise Senior Member

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    "Ron has written a document with their reasons and his responses. He is allowing it to be made public."
    I am very much looking forward to reading this!
    Does anyone know when it will be released?
     
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  8. Riley

    Riley Senior Member

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    Is there a way that we can really get Janet's comments out there? People at the NIH we could send them too?
     
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  9. medfeb

    medfeb Senior Member

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    No, not as a department.

    NIH adopted the term "ME/CFS." FDA and possibly other agencies refers to it by two separate terms - "ME" and "CFS."

    CDC uses the term "CFS" and explicitly ME and CFS definitions together under the "CFS" label but has split them apart in the ICD-10-CM which is due to roll out. I expect HRSA uses "CFS" since they have provided material from CDC to their networks.
     
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  10. searcher

    searcher

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    I am working with Janet et. al to get the document released today. I think it has the potential to have a big impact.
     
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  11. Denise

    Denise Senior Member

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    Thank you for letting us know.
    Will it be posted on PR?
     
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  12. searcher

    searcher

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    I will post a link on PR as soon as it is up.
     
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  13. searcher

    searcher

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    Hi all- You can find out more background about Ron Davis' rejection and see the rejection and his rebuttal at http://www.meaction.net/2015/08/20/ron-davis-nih-proposal/
    I am very thankful that Ron Davis has offered to share this document as it's incredibly illuminating. I have a feeling the reviewers of his pre-proposal do not include experts on ME/CFS....
     
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  14. Denise

    Denise Senior Member

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    Thank you
     
  15. searcher

    searcher

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    mango, Nielk, catly and 3 others like this.
  16. waiting

    waiting Senior Member

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    "Illuminating" is the perfect descriptor.
     
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  17. Snow Leopard

    Snow Leopard Hibernating

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    Platitudes from the NIH.

    We are stuck in a catch-22 researchers are sitting on the sidelines waiting for the next 'big breakthrough', before they are willing to dip their toes in. Meanwhile, very few researchers are submitting applications and getting funding - because they are afraid of wasting their time due to an extremely high rate of being knocked back.

    We need to encourage a specialist focus on ME and be willing to fund speculative/risky pilot studies. (but obviously still science based)
    Many of these studies will not get any substantial results, but this is how breakthroughs are made and how science progresses. Science is risky.

    In other diseases, they have strong charity groups which fund pilot studies and researchers are also willing to borrow funding from other areas to fund pilot studies on the sly (yes this is corruption and it sucks that this is the norm - this is the main way researchers have to do risky studies, because it is so hard to get funding otherwise)

    It is so sad that funding agencies don't understand the need - why funding (many) risky pilot studies will ultimately pay off in the end.

    The big game changer is crowd funding. The CAA and now Solve-CFS focused their efforts on funding pilot studies with the hope that it would lead to researchers having preliminary evidence to apply for funding from other funding.

    Just as important as the big studies (eg the Rituximab studies, or the microbiome project) are smaller pilot studies and potentially we could create our own crowdfunded organisation and review body to fund them. (optimistic, but there you go...)
     
    Last edited: Aug 20, 2015
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  18. caledonia

    caledonia

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    Not really, because CDC is still using CFS.
     
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  19. halcyon

    halcyon Senior Member

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    Yes sorry I meant to say NIH.
     
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  20. dannybex

    dannybex Senior Member

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    Does anyone know when the CFSAC will be posting videos of the meeting on youtube?
     

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