NICE – Contemptuous And Contemptible: The Case For Community Publication Of The “Paused” Guideline For “ME/CFS”

By Valerie Eliot Smith.

Disclosure: I have lived with the discrete illness myalgic encephalomyelitis since 1981. I have written extensively about the NICE process (amongst other topics) in relation to this illness.



In 2017, the English National Institute for Health and Care Excellence (NICE) began the process of updating the dangerously out-of-date guideline for “ME/CFS” (myalgic encephalomyelitis/chronic fatigue syndrome), originally published in 2007. This guideline recommended treatments which many patients have long found to be actively harmful. 

The new draft guideline was published on 10 November 2020, followed by a 6-week stakeholder consultation period. Final publication of the new guideline was expected on 18 August 2021. The draft guideline removed/downgraded the most harmful treatments from its recommendations and, as such, was broadly welcomed by the patient community.

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