Post-Exertional Malaise & GET in ME/CFS – a guide to the research

“Post-Exertional Malaise & Graded Exercise Therapy in ME/CFS” Primer, December 2017
A member of #MEAction Network Australia has written a primer, outlining the flaws in the graded exercise therapy (GET) research and explaining why GET is likely to be harmful for people with ME/CFS.
The primer has been endorsed by Emerge Australia Inc and infectious disease specialist, Dr John Whiting. It was submitted to the Australian Senate during the most recent Senate Estimates, in October 2017, has been sent to the President of the Royal Australian College of General Practitioners, as well as several Australian politicians, and has been used by patient advocates in meetings with politicians in Australia and Ireland.
Now it is being made available for patients to download and give to their health professionals, or attach to their applications for disability support.
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.
This primer is available on Emerge Australia’s website.

Facebook
Twitter
WhatsApp
Email

4 thoughts on “Post-Exertional Malaise & GET in ME/CFS – a guide to the research”

  1. This is an excellent resource, not only for patients to provide to their doctors but in efforts to get medical education providers globally to change their treatment recommendations. Kudos and thanks to Simone Eyssens

  2. Thank you 👏😇🙏 I ditto what Mary Diamond said 👏 😇💞 I hope this go’s global 🌍 kind regards Debra Nice 💌

  3. Made it through 10 weeks of GET, then had my most prolonged crash yet. If anyone is considering it, please don’t. Or at least make sure you’re specialist knows about CFS/ME. Mine didn’t know jack, and well, if they did I guess they wouldn’t be offering GET in the first place :-/

Comments are closed.

Latest News

Image is a sky blue rectangle, with an image of the #MEAction Maryland's logo that has the words Maryland State Chapter over an image of a lighthouse. On the righthand side if the image are the words, Join #MEAction's Marylans's #HelpMESenator Campaign in black font.

Join #MEAction Maryland’s #HelpMESenator Campaign

We are writing this article to share some exciting news! On Tuesday, September 26, ME advocates delivered copies of the book, The Puzzle Solver, by Tracie White with Ronald W. Davis, PhD, along with information about ME and Long Covid to Senators on the Hill. The books were donated by an individual living with severe ME/CFS in an effort to raise

Read More »
a collection of millionsmisisng pictures featuring people protesting over the years in red shirts and with protest signs. white dashses connect the photos. the words words "the Story of the #MillionsMissing" is in white font in the top lefthand corner with the #MEAction logo there. The words "Coming Soon" is handwriting font is in the top righthand corner.

“#MillionsMissing is our drumbeat”–Preview Party 9/24

RSVP TODAY: We are hosting a preview party for the new, virtual Home of the #MillionsMissing this Sunday, September 24th, at 12 pm PT/ 3 pm ET/ 8 pm BST! RSVP & Get Zoom Link Here We have always had to be creative in telling Our Story – the story of M.E. – to the world

Read More »