Open Letter to NICE Urging Immediate Publication of ME/CFS Guidelines
Saturday 16th October 2021
Dear Professor Leng, Dr Chrisp, and Professor Dame Black,
We write to you on behalf of multiple patient-led organisations around the world run by and for people with Long Covid, providing support, advocacy, education and research involvement, and ensuring the voices of people living with and affected by Long Covid are central to all responses, including policy and practice.
Many people with Long Covid, including children, identify with the symptoms of ME/CFS, and some are being diagnosed with the condition. Given the overlap in our symptoms and shared lessons in both directions, we often work closely with ME/CFS organisations and individuals, and support their urgent requests for the immediate publication of the revised NICE ME/CFS guideline that was delayed in August 2021.
We fully agree with Dr David Tuller’s letter of September 2021.
We understand that following consultation and a review of evidence, the ME/CFS NICE guideline has been updated to provide more appropriate guidance than the previous version. The evidence suggests Graded Exercise Therapy (GET) can be harmful and Cognitive Behavioural Therapy (CBT) is not in itself an effective treatment for ME/CFS worthy of inclusion in this document.
This reflects the scientific evidence and the lived experience of people with ME/CFS and others with post-exertional symptom exacerbation. The agency and self-determination of people living with ME/CFS in support of publishing the NICE guideline, should be a critical consideration in disability justice approached by NICE.
NICE guidelines are the foundation of practice for health practitioners in the UK and beyond; it is essential they are based on high-quality evidence. Indeed many of these signatories and their groups are the very stakeholders consulted in relation to the NICE Long Covid guideline.
Further delays in publishing the updated guideline, or alteration of the final draft following the roundtable meeting on 18th October effectively ignore the evidence and voices of the community, and expose people with these conditions to risk of harm.
In solidarity with the ME/CFS patient groups you are now in talks with, we urge you to publish the “final” NICE ME/CFS guideline without further delay, to ensure it reflects community driven practice recommendations in both ME/CFS [1] and Long COVID [2].
References:
1. Bateman L, Bested AC, Bonilla HF et al. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management. Mayo Clin Proc, 2021; 1-18.
https://www.mayoclinicproceedings.org/article/S0025-6196(21)00513-9/fulltext
2. World Physiotherapy. World Physiotherapy Response to COVID-19 Briefing Paper 9. Safe rehabilitation approaches for people living with Long COVID: physical activity and exercise. London, UK: World Physiotherapy; 2021. ISBN: 978-1-914952-00
Signatories Representing Patient-Led Long Covid Organisations on 16th October 2021:
Barbara Melville-Jóhannesson, Founder, Long Covid Scotland
Darren Brown MCSP BSc MSc MRes, Chair and Co-Founder, Long COVID Physio
Lesley Macniven, Leadership Team, Long Covid Support
Sammie McFarland, CEO and Founder, Long Covid Kids
Georgia Walby, Campaign Lead, Long Covid Wales.
Hannah Davis, Co-Lead, Patient-led Research Collaborative
Chantal Britt, President, Long Covid Switzerland
Maarte Preller, Founder, Long Covid Austria
Karyn Bishof, Founder, COVID-19 Longhauler Advocacy Project
Signatories Representing Patient-Led Long Covid Organisations after 16th October 2021:
Jonah McGarva, Co-Founder and Director, Long Covid Canada
Joost Klappe, Co-Founder, Long Covid Nederland
Angela Meriquez Vázquez MSW, Interim President, Body Politic
On 18th October 2021, confirmation was received that the letter has been read with acknowledgement of receipt.
Patient-led Long COVID organisations can add their signature to this letter after 16th October 2021. Representatives of organisations can make contact via our website.
Date Last Revised: 19th October 2021