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USA: National Institutes of Health (NIH) intramural ME/CFS study

Discussion in 'ME/CFS research news' started by Simon M, Mar 15, 2018.

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  1. Sanna

    Sanna Established Member

    Messages:
    8
  2. Sanna

    Sanna Established Member

    Messages:
    8
    I participated in this study and very much agree with Brian Vastag's opinions here. Thank you for participating and speaking out about this important study. We will make progress together!
     
  3. duncan

    duncan Senior Member (Voting Rights)

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    1,572
    Right. Sigh.
     
  4. Joh

    Joh Senior Member (Voting Rights)

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    Location:
    Germany
  5. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    2,199
  6. butter.

    butter. Senior Member (Voting Rights)

    Messages:
    196
    This should be reposted time and time again!

    It is completely above me why they after what, one year, still have not enough patients for this study, that is the dream for every moderate patient in my view to figure out what is going on!

    Please repost this everywhere, also OMF and ME Action should post this, as well as Healthrising!

    @Cort @JenB
     
    Hutan, Aroa, Sanna and 1 other person like this.
  7. Wilhelmina Jenkins

    Wilhelmina Jenkins Senior Member (Voting Rights)

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    Location:
    Atlanta, GA, USA
    It has been posted repeatedly. Vastag is the husband of the co-founder of ME Action. I think that the difficulty of obtaining diagnoses may contribute to the difficulty in finding people who have been sick for less than 5 years. By the time that people are diagnosed, they are often outside of the time window.

    I believe that they will get enough patients for the study, but it’s not easy.
     
  8. butter.

    butter. Senior Member (Voting Rights)

    Messages:
    196

    Thank you, still, I am quite active online, you are not hearing enough from it if you ask me. (of course nobody does :) )
     
    Susan K and Wilhelmina Jenkins like this.
  9. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    2,199
    Last edited by a moderator: Jun 30, 2022
    oldtimer, Forbin, ahimsa and 14 others like this.
  10. John Mac

    John Mac Senior Member (Voting Rights)

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    905
  11. 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.
     
  12. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    Belgium
    MEMarge, Michelle, Joh and 3 others like this.
  13. Andy

    Andy Committee Member

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

    Tom Kindlon Senior Member (Voting Rights)

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    Highlighting the existing one
     
    MEMarge, Hutan and Andy like this.
  15. 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.
     
    brf and Trish like this.
  16. Patient4Life

    Patient4Life Senior Member (Voting Rights)

    Messages:
    213
    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
    ukxmrv, Andy, ahimsa and 1 other person like this.
  17. Denise

    Denise Senior Member (Voting Rights)

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    470
    Yes.
     
    Last edited by a moderator: Jan 9, 2020
  18. Trish

    Trish Moderator Staff Member

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    51,870
    Location:
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  19. Sid

    Sid Senior Member (Voting Rights)

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

    ahimsa Senior Member (Voting Rights)

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    2,617
    Location:
    Oregon, USA
    Last edited: Jan 9, 2020
    MEMarge, rvallee, Andy and 4 others like this.
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