GET (Exercise) Removed from UK M.E. NICE Guidelines!

Rejoice!! (cue sound of trumpets)

After years of work by patients, doctors, and advocacy groups, the UK's National Institute for Health and Care Excellence (NICE) Guidelines for M.E. have finally removed the harmful recommendation to force ME/CFS patients to exercise. Hurray!!

I haven't been posting here about every step of this arduous process because it's been a long and difficult one. But with much of the rest of the world acknowledging  a few years ago that the original studies that resulted in recommending Graded Exercise Therapy (GET) as a "treatment" for ME/CFS were seriously flawed and the advice debunked, I felt it was only a matter of time before the UK itself came to the same conclusion. It's been a long road, though. Briefly, NICE was ready to release the new guidelines (without exercise included) a couple of months ago and suddenly postponed its publication. Since then, they held stakeholder meetings, hearing from hundreds of ME/CFS patients, doctors, researchers, and advocates (and plenty of medical professionals supporting GET, as well). Thankfully, science won out in the long run.

Here are some highlights of the new guidelines. They:

• Acknowledge that exercise, and specifically Graded Exercise Therapy (GET), can make patients worse.
• Provide advice around energy management instead.
• Downgrade Cognitive Behavioral Therapy (CBT) from a curative "treatment" to a support management tool.
• Include specific recommendations for those with severe ME/CFS and for children and young people.
• Perhaps most stunningly, the document acknowledges the prejudice, disbelief, and stigma that patients have endured for too long.

You can read a more complete summary of the process and the changes in this article from #MEAction. 

From the summaries I have read, I can't tell if the new NICE guidelines actually include any real medical treatments, like treating Orthostatic Intolerance, correcting sleep dysfunction, treating underlying infections, or treating immune dysfunction. The #MEAction summary does note that the section on research leaves out a lot of the latest research on causes, underlying physiology, etc. so I suspect the guidelines do not provide much in the way of specific treatments.

However, ME/CFS patients in the UK will no longer be forced to exercise, and ME/CFS clinics there will be allowed to offer a broader range of services, support ... and hopefully real medical treatments, too. They will no longer be limited by the old NICE guidelines which only allowed GET and CBT.

The impact of this wonderful news is not only confined to the UK, either. Unfortunately, over the past decades, many countries, doctors, and hospitals (including some of the most prestigious medical centers in the U.S., like Mayo and the Cleveland Clinic) have followed the UK's guidelines, so hopefully, this will put a stop to that also. The U.S.'s Centers for Disease Control (CDC) removed recommendations of GET and CBT from its own website guidelines, soon after the data emerged that they were harmful.

This is great news! It came about thanks to the tireless work of many, many people in the UK and beyond who deserve our gratitude. Hopefully, this is the beginning of a huge change in treatment protocols for ME/CFS patients in the UK and beyond.

NOTE: When I refer to "real medical treatments," I'm including many of the treatments that have helped my sons and I to improve our functioning and quality of life and live more active lives again. Read more about these treatments in the tab on this blog, Effective Treatments for ME/CFS.

And for more detailed guidelines on testing and treatments to share with your own doctors, refer to the documents from the U.S. ME/CFS Clinician Coalition, linked to in this post on New ME/CFS Testing and Treatment Guidelines.