Question

I know you feel that the new NICE guideline is a major improvement on the first one. So do I. But do you have any concerns, disappointments or disagreements on the content?

Answer

The NICE guideline development committee was made up of five patient representatives (all of whom made really excellent contributions) and 16 health professionals (almost all of whom had clinical experience of dealing with people with ME/CFS) so there was a very diverse range of views on both causation and management.

The committee examined evidence from clinical trials, from experts, charities and people with ME/CFS. They also took account of the views of members of the committee – which were based on either personal experiences, or their experience of dealing with people with ME/CFS – when reaching decisions about what to recommend, or what not to recommend.

The aim was to reach consensus decisions on all aspects of diagnosis and management. And while this was not always easy, we managed to produce a guideline that everyone on the committee, certainly in relation to the November 2020 draft, was willing to sign off. Not surprisingly, there are a few parts of the guideline that I am disappointed with. There are also a few parts that I do not agree with.

The most disappointing part is the lack of detailed information and guidance on the management of key symptoms such as pain, sleep disturbance, and dysautonomia (ie orthostatic intolerance and PoTS). However, this reflects the way in which most NICE guidelines refer on to other NICE guidelines for guidance on symptoms such as pain and sleep disturbance.

Linked to this, I was also disappointed by the large amount of space given to CBT. Whilst welcoming the fact that CBT is no longer being recommended as a way of treating the underlying disease process in ME/CFS, and can be used to help people cope with the psychological distress that can accompany ME/CFS, I am not convinced that it can be used to help with symptom control. The clinical trial evidence here is weak and patient evidence does not support this recommendation.

The section covering activity and energy management is obviously quite detailed and contains a great deal of very helpful practical information and guidance. I support the final part, which is there for people who are improving and want to be more active and return to some form of exercise. However, I do not agree with the use of the terms exercise or activity programmes here – as there is no published evidence on exercise or activity programmes for people with ME/CFS and no clarification as to what this means. What people require in this situation is individual guidance on how they can safely increase their activity levels. This should involve individual advice and not some form of undefined activity or exercise programme.

Finally, the MEA has always stated that hospital-based referral services must have the active involvement of a physician and should be physician-led. Although the section on specialist services says that there should be a range of medical speciality input present it does not state that these services need to have a physician who is actively  involved – in addition to the occupational therapists and physiotherapists. This is a significant defect.

More information

• We encourage everyone with ME/CFS or who cares for someone with the condition to familiarise themselves with the NICE Guideline and its recommendations. An easy-read version of the guideline has been produced and is available to download for free: An ME Association Summary of the 2021 NICE Clinical Guideline for ME/CFS.
• Think about the guideline's recommendations and how they might apply to your own situation. Discuss them with your GP or local ME/CFS specialist service. Please let us know how you get on and how they are received: Feedback@meassociation.org.uk