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Post-Exertional Malaise & Graded Exercise Therapy in ME/CFS - a Primer

Discussion in 'PsychoSocial ME/CFS News' started by Simone, Feb 13, 2018 at 12:03 AM.

  1. Simone

    Simone Established Member (Voting Rights)

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    I wrote this primer last year, outlining the flaws in the GET research and explaining why GET is likely to be harmful for people with ME/CFS. It is specifically targeted towards health professionals and disability assessors, to give them a summary of the issues with the GET research. The primer has been endorsed by Emerge Australia, and infectious diseases specialist Dr John Whiting. It was submitted to the Australian Senate during the most recent Senate Estimates, in October 2017, and has been sent to the President of the Royal Australian College of General Practitioners as well as several Australian politicians. To date it has been used by advocates in Australia and Ireland. It has now been made public for patients to give to their health professionals, or include with their disability applications.

    Key points in the primer:

    1. PEM, not fatigue, is the cardinal feature of ME/CFS.

    2. GET research uses broad diagnostic criteria that doesn’t require PEM for diagnosis and, instead, focuses on fatigue. In order to be studying ME/CFS, study participants must experience PEM, but there is no way of knowing how many (if any) participants in GET studies do.

    3. GET research primarily uses subjective outcome measures, which are subject to bias. When objective outcome measures are used, evidence does not support the use of GET for ME/CFS.

    4. GET research has been criticised for inadequate reporting of harm. Patient surveys indicate that many patients experience harm from GET treatment.

    5. Despite the flawed nature of GET research, patients are routinely rejected from support services because ME/CFS is seen to be both temporary and treatable with GET, despite ME/CFS having a low recovery rate.

    The document also includes a two page summary at the beginning, for those who are unable to read the entire document.

    jpcv, Inara, Solstice and 24 others like this.
  2. ConstantlyEvolving

    ConstantlyEvolving Established Member

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    So thankful to have a current, concise primer on GET. Twenty three or more pages of referenced succinct work we can use ourselves, take to our physicians or provide to those seeking more info.

    Thanks Simone :)

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