MEA statement re the development of the new NICE guideline on ME/CFS
Following publication of the draft of the new NICE guideline on ME/CFS for Stakeholder consultation in November 2020 it has become increasingly difficult for me to fulfil some key parts of my role at the ME Association (MEA).
In particular, this relates to providing information and commenting on key issues of concern to the ME/CFS patient community that also form part of the NICE guideline and at the same time not creating what NICE regard as a conflict of interest*.
The MEA work that creates special difficulty involves providing information and comment to the media and responding to comments and queries that are posted on our social media forums about two key issues of concern: CBT and GET.
Commenting on concerns and disputes relating to CBT and GET in any public forum almost inevitably creates a conflict of interest at NICE.
The same situation applies to actively supporting the recommendations in the November draft to no longer recommend CBT and GET as treatments for ME/CFS in the debate that is now taking place in the media and in the British Medical Journal.
During the past few months, I have made a number of contributions to the media, and in the British Medical Journal, which fully support the recommendations in the November draft. Three examples:
- BBC Newsnight: https://meassociation.org.uk/2021/04/me-association-statement-re-bbc-newsnight-report-on-long-covid-me-cfs/
- The Guardian: https://meassociation.org.uk/2021/03/mea-reply-to-guardian-letter/
- The British Medical Journal: https://meassociation.org.uk/2021/07/british-medical-journal-working-together-to-find-the-cause-effective-treatments-for-me-cfs-by-dr-charles-shepherd/
In addition, I have responded to concerns and questions on our social media from people who are still being persuaded to have CBT or GET.
This is part of a recent exchange (later modified to clarify that the information referred to the November draft of the guideline) on MEA Facebook regarding GET:
- CS reply – Is whoever that is nudging you into GET aware that the November 2020 draft of new NICE guideline, due for release in 4 weeks’ time, is no longer recommending GET for ME/CFS? This is because there is no sound research evidence to show that it is effective and there is consistent patient evidence of harmful effects. If GET was a drug doctors would have had to stop using it years ago! Dr CS MEA
- Reply: thanks for that Dr Shepherd, I feel that my daughter’s physio is trying to nudge her towards GET, so it’s really useful to have this clear, succinct evidence-based answer as we can’t always find the words in the moment. And often feel we are not believed even when we do find them!
In this case NICE received a complaint from someone who is carefully monitoring our social media content. This resulted in a further discussion relating to my continuing conflicts of interest and I have now been ‘stood down’ from the NICE guideline committee.
I have been thanked for my hard work and contribution to the committee over the past three years and given the opportunity to appeal against the decision.
I am not going to do so as the work of the guideline committee is now almost over as far as preparations for the final version of the guideline – which will be published on August 18th – are concerned.
The recommendations in the November 2020 draft of the guideline represent a major improvement to the current NICE guideline and I would like to thank the Chair and all my colleagues on the committee for reaching these consensus decisions.
Before leaving the committee I have recorded my views on some changes to the guideline that have taken place following the Stakeholder consultation on the November draft and I will comment on these when the guideline is published. To do so before August 18th would break NICE guideline committee confidentiality agreements.
Dr Charles Shepherd
2nd August 2021
*Footnote:
NICE policy on declaring and managing conflicts states that there is a conflict of interest when a reasonable person would consider that an individual’s ability to apply judgement or act in the work of NICE is, or could be perceived to be, impaired or influenced by one of their interests.