The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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MedPage Today: "Chronic Fatigue Syndrome: A Call for Real Answers to a Real Disease" (Sept 11)

Discussion in 'General ME/CFS News' started by Dolphin, Sep 12, 2015.

  1. Dolphin

    Dolphin Senior Member

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    New quite detailed article. Quite informative as articles go for websites that don't concentrate on ME/CFS. Pity about "Chronic Fatigue" in the title.

    Includes comments from Lucinda Bateman, Lily Chu, Elizabeth Unger, Carol Head, Mady Hornig, Leonard Jason and Robert Miller.
     
    Last edited: Sep 16, 2015
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  2. Sean

    Sean Senior Member

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    Gets it completely the wrong way around. It has historically been ME, then was rebranded CFS.
     
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  3. Bob

    Bob

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    Does anyone happen to know what they are?
     
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  4. anciendaze

    anciendaze Senior Member

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    Anyone want to place bets on some of these being relabeled antidepressants that failed to gain approval?
     
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  5. Never Give Up

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

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    I think Skip Pridgen was applying for patents on his protocol to treat CFS...
     
  6. jimells

    jimells Senior Member

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    I guess whoever wrote this part of the article didn't read the third paragraph where it says

    like @Sean pointed out.

    Also, I'm pretty sure the committee actually couldn't agree on a new name but voted to reject "SEID".


    The authors sure have a hard time getting details correct:
    As I understand it, Ampligen is not approved for any disease, so how can it be taken "off-label"? The way this is written implies Ampligen has been approved, but not for us. I think correct details are important, even in journalism, but apparently these journalists can't be bothered.
     
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  7. Roy S

    Roy S former DC ME/CFS lobbyist

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    Carol Head has some very good quotes in that article.

    We need a Standing Study Section instead of the Special Emphasis Panel at the NIH. (boring history from the previous millennium deleted)
     
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  8. medfeb

    medfeb Senior Member

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    The FDA rep to CFSAC stated that there were 6 INDs (Investigational New Drug Application) but confidentiality rules don't allow the FDA to say what they are. Bob Miller followed up stating that he understood that most were supplements or herbals or something of that type and that the only drug was Ampligen.

    That's what I have understood as well from earlier discussions with FDA leaders, unless something has changed in the last year or so.

    Link here - https://youtu.be/lKeWBvEBK4E?t=1937

     
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  9. Never Give Up

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

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    Progress! MedPage Today has changed the title of this article to

    "Chronic Fatigue Syndrome: A Call for Real Answers to a Real Disease"
     
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  10. *GG*

    *GG* Senior Member

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    So maybe @Dolphin can change the Title now?

    GG
     
  11. Dolphin

    Dolphin Senior Member

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    Done
     

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