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CEO responds to letter in The Guardian

March 15, 2021

On 11 March a letter was published in The Guardian claiming that those with post-Covid fatigue syndrome should not be discouraged from trying graded exercise therapy. Along with other M.E. charities, we believe graded exercise therapy is not the right way to treat people with M.E. or long Covid and have written to the letter editors at The Guardian. Our letter below has yet to be published.

We are alarmed to see a letter published that ignores the lived experience of thousands of people ME, and risks causing further harm. If graded exercise therapy (GET) really is an “effective treatment” for myalgic encephalomyelitis (M.E.)/chronic fatigue syndrome (CFS), why is the National Institute for Health and Care Excellence (NICE) poised to no longer recommend it? The draft 2021 guideline for diagnosing and managing M.E./CFS, being finalised for publication next month, couldn’t be clearer that people with M.E./CFS should not be offered “any therapy based on physical activity or exercise as a treatment or cure.”

Our own survey of more than 4,000 people with this debilitating neurological condition found that, even when support by specialist (trained to properly deliver it as per your correspondents’ suggestion), only one in 10 reported that GET helped manage symptoms, while nearly half said it made them worse. We can and must do better for people with all post-viral conditions, including M.E./CFS and long Covid.

Sonya Chowdhury
Chief Executive
Action for M.E.

At Action for M.E. we are working hard to ensure the voices of people with M.E./CFS are heard.