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

Text across top of image reads: "Experts in infection associated chronic illness" with "WE WANT YOU!" bolded below it. Hand with finger pointed out at viewer. "Apply now" buttons to the left and right with mouse cursor clicking on them.

Infection-associated chronic disease experts needed at ARPA-H

Congress launched ARPA-H (the Advanced Research Projects Agency for Health) this past March to focus on high-risk, high-reward research projects with the goal to solve intractable health problems. As ARPA-H is in the process of hiring its first cohort of program managers, #MEAction and a coalition of chronic disease advocacy groups have published an open

Read More »

BOLD ACTION is a Commitment to Healthcare Justice for People with ME

BOLD ACTION to me, means mobilizing our community to publicly demonstrate our deep and intense—as opposed to shallow and passive—commitment to seeing healthcare justice for people with ME. It is about bringing our issues to the forefront of public consciousness and putting strong pressure on our leaders to act. Taking BOLD ACTION is both a

Read More »

Help keep our work going

We rely on donations from people like you to keep fighting for equality for people with ME.

Donate

Get actions alerts and news direct to your inbox

You can choose what you want to be kept up to date on.

Subscribe
Scroll to Top