Valerie Eliot-Smith: Legal opinion and legal advice: the “paused” NICE guideline for “ME/CFS”


Senior Member

Legal opinion and legal advice: the “paused” NICE guideline for “ME/CFS”

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. I work independently and I am not affiliated to any organisation or group in the ME community. I am a barrister, called to the Bar in 1987. For more information see About.
For the full background to this post see previous post here.

Summary for new readers
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the English National Institute for Health and Care Excellence (NICE) began the process of updating the dangerously out-of-date guideline for “ME/CFS” (myalgic encephalomyelitis/chronic fatigue syndrome), originally published in 2007.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.
After several delays, the draft guideline was published on 10 November 2020. This draft removed/downgraded the most harmful treatments from its recommendations and, as such, was broadly welcomed by the patient community. On 4 August 2021, the new guideline, marked “FINAL“, was circulated to stakeholders who had commented on the draft version.
By this stage, the guideline committee had approved this final version and, according to the NICE manual, the NICE Guidance Executive would now have signed it off. The fact that it was then circulated to stakeholders indicated that the process was now closed and completed.

According to NICE’s “Main stages of guideline development“, the publication stage began at this point. Publication to the world at large was scheduled for 14 days later, on 18 August. The document was to remain confidential until then.
Just after 3pm on 17 August, less than 9 hours before the scheduled time for general publication of the new guideline, NICE notified stakeholders that it was “pausing” publication. By this stage, only exceptional circumstances could have derailed the process. Thus far, NICE has failed to provide evidence of any such circumstances.

The “roundtable event” proposal
After eleven days of consternation and confusion in the ME patient community, NICE issued a statement which included the following paragraph:
The [roundtable] meeting, which will be held in September 2021, will have an independent chair and will include representatives from patient organisations and charities, relevant professional societies and from NHS England and NHS Improvement, NICE and the guideline committee.​
Given that the process of updating the guideline had already been completed, it’s somewhat puzzling to see what purpose this event could possibly fulfil.
Legal opinion via Twitter

On 28 August, I composed an 18-tweet Twitter thread as follows: ........................