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

Share on facebook
Share on twitter
Share on email

โ€œPost-Exertional Malaise & Graded Exercise Therapy in ME/CFSโ€ 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 doesnโ€™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 Australiaโ€™s website.

Share on facebook
Facebook
Share on twitter
Twitter
Share on whatsapp
WhatsApp
Share on google
Google+
Share on email
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 ๐Ÿ‘๐Ÿ˜‡๐Ÿ™ I ditto what Mary Diamond said ๐Ÿ‘ ๐Ÿ˜‡๐Ÿ’ž I hope this go’s global ๐ŸŒ kind regards Debra Nice ๐Ÿ’Œ

  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 :-/

Leave a Comment

Your email address will not be published. Required fields are marked *

Latest News

Sign petition To Fix ME/CFS tracking In US!

In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the

Read More ยป

NICE announces roundtable event to ensure implementation of ME/CFS guideline

NICE announced today that it will hold a roundtable in September as the next step in the publication of the ME/CFS guideline. The roundtable will include representatives from patient organisations and charities, relevant professional societies, NHS England and NHS Improvement, NICE and the guideline committee. It aims to, โ€œbetter understand the issues raised and determine

Read More ยป

#MEAction & 6 ME Orgs Call for CDC to Change How it Tracks ME/CFS

Together with six other organizations, we have submitted a proposal to the National Center for Health Statistics (NCHS) to add myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to the neurological chapter of the International Classification of Diseases (ICD-10-CM).ย  Today, ME/CFS does not exist in the US ICD-10-CM. Instead,ย  most US doctors assign the code for chronic fatigue

Read More ยป

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