A A A Text size

NICE guideline delay: David Tuller's letter

September 16, 2021

Action for M.E. is among more than 100 UK and international charities, organisations and support groups, alongside 150 scientific and clinical experts, who have co-signed a letter from David Tuller to the National Institute for Health and Care Excellence (NICE).

Addressed to Prof Gillian Leng, Chief Executive, the letter urges NICE "to publish the new evidence-based M.E./CFS guideline without further delay."

The guideline, scheduled to be published in August, was paused at the last moment; along with other Forward-ME charities, we want to see the final guideline launched without delay.

As Mr Tuller makes clear in his letter:

"Since 2017, NICE has been developing a new clinical guideline for [...] ME/CFS. To pursue this task, NICE empanelled a well-balanced committee representing a range of perspectives and conducted a thorough review of the relevant research. The review determined that the quality of the findings in favour of the two most common treatments - graded exercise therapy and cognitive behaviour therapy - was either “very low” or merely “low” [...]

"Making changes at this late stage or cancelling publication altogether would represent a victory of vested professional interests over the rights of patients to receive care consistent with the available research."

You can see the full list of signatories on Mr Tuller's blog. Action for M.E. will attend a roundtable discussion next month, at which NICE aim to "better understand the issues raised and determine how it can gain support for the guideline to ensure effective implementation."