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Forward-ME call for NICE guideline warning

December 10, 2020

The Forward-ME group has called for a health warning to put added to the existing NICE guideline for M.E. to limit potential damage through graded exercise therapy (GET). This comes following the apparent retraction of GET guidance in last month’s publication of a new draft guideline for M.E.

Forward-ME says:

“As long ago as 2002, the Chief Medical Officer’s Working Group recognised that ‘substantial concerns exist regarding the potential for harm’ in respect of graded exercise, and that patients reports ‘clearly indicate that the York review results do not reflect the full spectrum of patients’ experience’.
“We do not consider that it is acceptable for this situation to continue unabated pending the publication of the revised guidelines, presently scheduled for April 2021.
“We are aware that the Health Department in Scotland has recently cautioned against GET. We call on the Department of Health to make a similar caution public now in order to help safeguard patients in England.“

We have added our signature to this statement. Our 2019 Big Survey of more than 4,000 people with M.E. found that only 6% of respondents said GET helps/has helped them to manage symptoms, while more than a third (38%) said it worsened symptoms. A 2017 analysis of surveys by Action for M.E. and other patient charities, published in the Journal of Health Psychology, also suggests that GET brings about “negative responses” in 54% to 74% of patients. The paper cited pacing as the symptom-management approach that had the highest reported benefit.

You can see Forward-ME’s full statement by visiting the 'letters' page on their website and selecting the top link titled ‘2020-11 CG53 Recommendations require a public caveat-1’.