#MEAction UK have once again written to the National Institute for Health and Care Excellence (NICE) imploring them to act to safeguard people with ME from harm, after their recent statement cautioning that the recommendation of graded exercise therapy should not be assumed to apply to patients with post-COVID symptoms.
Development and publication of the new ME/CFS guideline is now set to take almost 4 years – that is time in which countless more people with ME have been prescribed graded exercise therapy to their detriment. It is functioning and livelihoods lost that may never be recovered.
Read our open letter to NICE:
Dear Helen Finn,
Thank you for your latest email. We note that NICE has now put out a short statement under the title ‘interim findings’ clarifying that the 2007 recommendation of graded exercise therapy (GET) for people with mild and moderate ME should not be assumed to apply to people with post-COVID fatigue.
#MEAction UK are pleased to finally see movement from NICE on this issue, but it is still imperative to communicate to you that this step continues to fail people with ME, and will also fail people who develop ME post-COVID.
We are relieved that patients experiencing post-COVID symptoms will not initially be subject to the same harmful recommendation from NICE as people with ME have been for the last 13 years.
We would like to know on what evidence base you decided to make this statement. At present, we can only be led to assume that you have made this statement based upon the harm that people with ME have experienced, therefore we can see no reason to withhold a similar warning relating to ME itself.
After multiple delays – some unavoidable – development and publication of the new ME/CFS guideline is now set to take almost 4 years. At every stage #MEAction and other patient organisations have made you aware that the existing guidelines are harmful. The evidence base clearly demonstrates harm. Other countries have already taken steps to end harmful practices. We have sent you individual stories of harm from thousands of people and we have made you aware of the personal impact behind the decision to leave harmful recommendations in place. You are concerned enough to issue a statement saying that GET is not recommended for post-COVID patients and yet you do not seem to have the same concern for people with ME. NICE can choose to act, and we once again implore you to do so.
As we will be publishing this letter and your response on our website and social media, please let us know if anything in your response is to be considered confidential.
Kind regards,
#MEAction UK
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I suffer from severe ME (myalgic encephalomyelitis) and am bedridden for 22 out of 24 hours a day. I would very much like to participate in any tests you have going on. I have had this disease for 33 years now and am 70 years old. You can contact me via email f you are interested in having “Guinea pigs” like myself, who have endured this painful disease for so long.