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Associated Press video piece on exciting NIH intramural study

Discussion in 'BioMedical ME/CFS News' started by Tom Kindlon, Jan 8, 2020.

  1. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    To facilitate sharing:

     
    oldtimer, Forbin, ahimsa and 14 others like this.
  2. John Mac

    John Mac Senior Member (Voting Rights)

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  3. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    This sort of wave of publicity is the type of thing the CMRC project could do with if funded.
     
  4. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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  5. Andy

    Andy Committee Member & Outreach

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    I'm confused (which doesn't take much..;)). Is this another inter-mural study or is this highlighting the existing one?
     
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  6. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Highlighting the existing one
     
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  7. rvallee

    rvallee Senior Member (Voting Rights)

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    Not bad. Could have been better, could be worse. The scale of the problem isn't well-represented, but then it rarely is, even in other diseases.

    Best thing out of this is if it leads to more participants in the study.
     
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  8. Patient4Life

    Patient4Life Senior Member (Voting Rights)

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    Merged thread

    Patients Push Limits for Clues to Chronic Fatigue Syndrome By LAURAN NEERGAARD, AP Medical Writer (Jan 8, 2020)


    Is this the post-infectious study?
     
    Last edited by a moderator: Jan 9, 2020
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  9. Denise

    Denise Senior Member (Voting Rights)

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    Yes.
     
    Last edited by a moderator: Jan 9, 2020
  10. Trish

    Trish Moderator Staff Member

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    Tom Kindlon and Andy like this.
  11. Sid

    Sid Senior Member (Voting Rights)

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    Pretty good coverage. Not as ignorant or stereotype-laden as usual.
     
  12. ahimsa

    ahimsa Senior Member (Voting Rights)

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  13. Forbin

    Forbin Senior Member (Voting Rights)

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    Interesting that his onset followed strep throat. I suspect my onset also followed strep. I (foolishly) didn't see a doctor about it, but it was unlike any sore throat I'd ever had. Every time I swallowed, the back of my throat felt like I was drinking acid. Those sore throat lozenges were useless. That went on for 2-3 days, as I recall. Didn't fully recover for 2 weeks. A week after that, bang!, onset of ME/CFS.
     
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  14. Kalliope

    Kalliope Senior Member (Voting Rights)

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  15. rvallee

    rvallee Senior Member (Voting Rights)

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    If only those scientists had the funding they need.

    Now that will be the day.
     
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  16. Kalliope

    Kalliope Senior Member (Voting Rights)

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    The Associated Press published a syndicated article last week profiling a study being done by the NIH on ME/CFS. The article describes well the severity of ME, and the immense challenges our community faces, including lack of treatments, difficulty getting a diagnosis, skeptical doctors and a lack of knowledge about the disease.

    While the AP article explains well the dire nature of ME/CFS, the reporter fails to mention how the NIH has played – and continues to play – a central role in perpetuating this health crisis, which has plagued the ME community for nearly 40 years since ME/CFS captured national headlines in the early ’80s.

    ...

    #MEAction has written the following letter to the AP journalist to explain the larger story at play.


    MEAction: NIH Neglect Is a Key Reason For The ME/CFS Crisis
     
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  17. Louie41

    Louie41 Senior Member (Voting Rights)

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    This article was the lead article in the Science & Health section of our Sunday newspaper. At least should help with public awareness.
     
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