The ME community responds to NICE ‘Roundtable’ announcement


NICE made an announcement about ‘next steps’ following the ‘pause’ in publication– a roundtable discussion between stakeholders in September.

WAMES responded by writing to NICE expressing our commitment to the publication of the ME/CFS guideline, our willingness to join the Roundtable & the urgent need for transparency surrounding the process.


ME community responses:

Trial By Error: An updated letter to the NICE Chief Executive about the unpublished ME/CFS Guideline: Virology blog  15 Sep 2021

Signed by more than 150 experts and more than 100 UK and international charities, support groups and other relevant organizations, including WAMES.

The leak of NICE’s finalised ME guidelines exposes the ‘psych lobby’ scandal: The Canary  14 Sep 2021

Abuse of process & abuse of power: a NICE publication (with file download): Valerie Eliot Smith  13 Sep 2021

Ron Davis issues a statement on the NICE guidelines: Open Medicine Foundation, 7 Sep 2021

Medical advice must follow the evidence and not personal beliefs or political positions. If doctors treating ME/CFS patients do not agree with evidence based guidelines, they should not be treating these patients. This is why we have guidelines.

NICE Guidelines development debacle – and so it continues. Comment: A continuing saga of ineptitude: Invest in ME, 4 Sep 2021

Statements about ME/CFS from New Zealand Academics: Prof Warren Tate & Dr Lynette Hodges  2 Sep 2021


Legal opinion and legal advice: the “paused” NICE guideline for “ME/CFS”: Valerie Elliot-Smith  1 Sep 2021

Trial By Error: A Letter Urging NICE to Publish ME/CFS Guideline Without Delay: Virology blog   1 Sep 2021

Prof Tuller sent a letter to the CE of NICE signed by an international collection of 107 clinicians & researchers urging NICE to publish the guideline. He also told her about the new US guideline.  5 medics from Wales also signed, some from the long COVID community.

Forward-ME Statement concerning NICE Sept 2021 meeting: MERUK  30 Aug

Letter sent…to NICE about the ‘pause’ and roundtable meeting: S4ME  30 Aug

Public letter to DHSC, MRHA, HoC, NICE: call for a medial regulatory agency: Doctors with ME  29 Aug 2021

Physios for ME response to delayed NICE Guidelines: Physios for ME  29 Aug 2021

As stakeholders we had already taken part in the lengthy and in-depth consultation process and we find it difficult to understand what more can be discussed given the finalised guidelines were based on a robust analysis of the current evidence base.

NICE announces roundtable event to ensure implementation of ME/CFS guideline: #MEAction, 27 Aug

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One Response to NICE – ME community response to ‘Roundtable’ announcement

  1. Pingback: NICE delays Roundtable – no invite for WAMES! | WAMES (Working for ME in Wales)