1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for CFS here.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 27th November 2023 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

When even Medscape can't get your disease name right

Discussion in 'General ME/CFS news' started by Webdog, Apr 9, 2018.

  1. Webdog

    Webdog Senior Member (Voting Rights)

    Holodeck #2

    (free account required to read)
    ME/CFS is such a confusing mess, even Medscape gets the name wrong :banghead:.

    Still, a decent brief video summary of the IOM (SEID) diagnostic criteria, and results of the recent ME/CFS summit in Salt Lake City.

    It doesn't mention the IOM criteria are now the diagnostic criteria on the CDC website.
    Last edited: Apr 9, 2018
  2. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    This is still up on their website (from 2008?)
    Chronic Fatigue Syndrome: Diagnosis to Management (medscape.org)

    18 Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A. The chronic fatigue syndrome: a comprehensive approach to its definition and study. International Chronic Fatigue Syndrome Study Group. Ann Intern Med. 1994;121:953-959.

    19 Reeves WC, Wagner D, Nisenbaum R, et al. Chronic fatigue syndrome -- a clinically empirical approach to its definition and study. BMC Med. 2005;15:19.

    Hutan, RedFox, Sean and 1 other person like this.
  3. NelliePledge

    NelliePledge Moderator Staff Member

    UK West Midlands
    Hutan, Trish and Amw66 like this.
  4. AknaMontes

    AknaMontes Senior Member (Voting Rights)

    I managed to get the GMC to apologise last week for calling ME chronic fatigue syndrome in a document about medical education.

    I pointed out it is usually seen a) as the derogatory name for the disease, so an inclusivity issue, b) at least in the UK it looks out if date and silly,and usually signals the person or clinic does not regard ME as biomedical or PEM as needing to be taken seriously, c) it has a long history of being muddled up with chronic fatigue in research and clinical settings as well as in media and causing chaos in people’s documentation.

    It even leads to low quality research as different cohorts of participants become confused in studies, some with a full blown complex biomedical, multisystem, multisymptom disease involving exercise intolerance and needing management to prevent PEM, the other being just a symptom of fatigue arising from other conditions.

    Worse still it causes people to end up with a confusion of different conditions and conflicting managment advice. Both conditions require pacing, but two different types of pacing, one multifactorial to prevent PEM causing overall long term deterioration, a safety issue, the other just to enhance quality of life. Ot is always worth challenging every time it comes up.

    We may need people to write to every medical school in the UK next year if they start using it. Apparently the problem lies in its use in their content map, but they are going to try to get it changed.
    Last edited by a moderator: Jun 13, 2023
    Simbindi, Lou B Lou, Solstice and 7 others like this.
  5. Sean

    Sean Moderator Staff Member


Share This Page