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Genetic and Rare Diseases Information Center: ME webpage

Discussion in 'General Advocacy Discussions' started by Andy, Mar 2, 2019.

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  1. Andy

    Andy Committee Member (& Outreach when energy allows)

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    Hampshire, UK
    merylg, Inara, Lisa108 and 12 others like this.
  2. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    What a good website. They even ask for suggestions to add re research, organisations etc
     
    Lisa108, Webdog, Yessica and 4 others like this.
  3. Webdog

    Webdog Senior Member (Voting Rights)

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    Got an email from GARD (NIH) this week. They agreed to remove the statement that, in most cases, symptoms of CFS lessen over time. The relevant bits of the email follow (bolding and spacing mine):
    https://rarediseases.info.nih.gov/diseases/7121/chronic-fatigue-syndrome
     
    Last edited: May 11, 2019
  4. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Merged thread

    Update April 2020

    more info on Diagnosis, Treatment and Research (written and audio)
    https://rarediseases.info.nih.gov/diseases/7121/chronic-fatigue-syndrome
     
    Last edited by a moderator: Apr 16, 2020
  5. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

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    Here is a link for the 2017 version on the Wayback machine.
    https://web.archive.org/web/2017020...ih.gov/diseases/7121/chronic-fatigue-syndrome

    The biggest change in the 2020 version seems to be the use of "Myalgic encephalomyelitis/chronic fatigue syndrome" in the title and elsewhere. Previously the title was "Chronic fatigue syndrome". Additonally the term "Chronic fatigue immune dysfunction syndrome" looks to be retired.

    This section looks to be new. Anyone know any more about their work and interest in ME?
    What a shame the first link about learning is to Mayo. Note this link was also there in the 2017 version.
    Where the treatment tab states (on MAYO website, not GARD).
     
  6. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    How or who could we approach to get Mayo Clinic to update their website info on ME. It actually really upsets me as a severe patient that they are still touting GET. Any suggestions???
     
  7. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

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    @dave30th has written a couple of blogs on it. This is a link to the latest.
    https://www.virology.ws/2019/12/10/trial-by-error-mayo-clinics-crappy-website/

    Here is a S4ME thread
    https://www.s4me.info/threads/david-tuller-trial-by-error-mayo-still-champions-get.5258/

    I can't remember if he wrote a letter to Mayo Clinic or not? I believe a couple of patients have written to them.......
     
  8. Perrier

    Perrier Senior Member (Voting Rights)

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    Invisible Woman and ScottTriGuy like this.

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