GET Archives

“The treatment of ME has been Dickensian” – NICE’s roundtable on the ME/CFS guideline

October 19, 2021 17 Comments

After NICE’s roundtable, Janet Sylvester tells us: “I felt this was a positive meeting. There were large areas of agreement from all attendees, including all acknowledging the terrible experiences people with ME have had to endure. Together, the representatives from ME patient organisations were able to strongly get across the reality for people living with ME. I’m optimistic the guidelines will be published.”

Over 7K Sign #MEAction’s Response to Flawed CDC Review

August 16, 2021 1 Comment

Over 7K sign #MEAction’s response to CDC

Graphic of people sitting on stools having a discussion

Cochrane redux

June 16, 2021 No Comments

Get caught up! Start with Cochrane Analysis: What’s Here, What’s Missing, Conclusions What has gone on before Cochrane Reviews are well-known systematic reviews of studies in healthcare, and are internationally recognized — enough to be considered the last word in healthcare as far as some medical publications are concerned. In 2019, Larun et al. wrote

New graded exercise warning on current ME/CFS guideline

December 11, 2020 3 Comments

#MEAction UK has just received a momentous email from the National Institute for Health and Care Excellence (NICE), advising us that they have updated the warning on the 2007 CFS/ME guideline, directing health professionals to the new draft recommendations on graded exercise therapy.

Celebrating Our Wins for ME!

April 11, 2019 No Comments

It has been been an exciting time for the myalgic encephalomyelitis (ME) community these past few weeks. We are in awe of the sacrifices and hard work people with ME and their allies have made to make their voices heard. #MEAction and the Solve ME/CFS Initiative organized the largest Advocacy Day ever with more than 200

The Effects of Graded Exercise Therapy and Positive Thinking on a Young Girl with ME

January 23, 2019 9 Comments

Listen to the article: Exercise protocols prescribed for myalgic encephalomyelitis (ME) were powerful enough for Cherry to ignore the physiological realities of her disease. Cherry is now 100 percent bedridden. When 16-year-old Cherry from North London began the treatment prescribed for her myalgic encephalomyelitis (ME) in 2013, she was able to walk to her local

Cochrane Temporarily Removes Review of "Exercise Therapy for CFS"

October 27, 2018 4 Comments

Cochrane has temporarily removed a review from its database that claims exercise therapy is effective for chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME). Cochrane is a database of medical reviews and meta-analyses, which medical providers around the world rely on for diagnosing and treating disease. Their review, Exercise Therapy for Chronic Fatigue Syndrome, covers

Denmark has some recommendations for ME… and they're pretty awful

July 9, 2018 23 Comments

Article written by Rebecca Hansen, Chairman of the Danish ME Association The Danish Health Authority (SST) released their new treatment recommendations for Myalgic Encephalomyelitis (ME) patients on June 18 as part of a guideline called “Physical Training as Treatment.” The chapter on ME is nothing short of medical abuse. It defines ME as fatigue and states that

Westminster Hall debate could be a 'turning of the tide' for ME

June 21, 2018 35 Comments

Today was a turning of the tide for Myalgic Encephalomyelitis (ME) as 26 MPs attended a Westminster Hall debate on treatment and research for ME. MPs called for the immediate removal of Graded Exercise Therapy (GET) from the NICE guidelines, as patients have consistently reported being harmed from attempting to undergo this treatment. MP Ed Davey

Reanalysis of PACE Trial Shows GET and CBT are Ineffective

March 23, 2018 No Comments

What would have been the outcome of the PACE trial had the investigators followed its original protocol instead of relaxing the criteria for “recovery” as the trial progressed? Researchers have just published a paper seeking to answer this question in a reanalysis of the PACE trial based on its original protocol. The authors concluded that

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