Position Statement: 2021 NICE Guideline Update

From Doctors With ME.

On the 10th of November 2020, the National Institute for Health and Care Excellence (NICE) published its draft updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS). NICE has updated its 2007 recommendations on the use of psycho-behavioural treatments for ME/CFS, concluding that Graded Exercise Therapy (GET) should no longer be offered to patients and that Cognitive Behavioural Therapy (CBT) is not a treatment or cure for ME/CFS.

Doctors with M.E. (DwME) welcomes and supports this change in treatment recommendations, and we await publication of the final guideline in August 2021. NICE undertook an extensive evidence review and consultation process that involved a wide range of stakeholders, including many clinical experts and patient groups. DwME fully supports NICE’s decision to no longer recommend GET as treatment for ME/CFS. Unstructured exercise or exercise programmes developed for the rehabilitation of patients with other conditions are also not recommended. There is now considerable evidence showing that GET is an ineffective treatment for ME/CFS. Furthermore, there is widespread evidence that GET is harmful – ME/CFS patients suffer a worsening of symptoms and/or chronic deterioration in disease severity after undertaking GET.

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