ME Association Statement on the NICE clinical guideline for ME/CFS and the NICE guideline for Post/Long Covid-19

October 8, 2020

Explanation of Post/Long Covid-19 and ME/CFS

1. There is an important overlap between Post-Viral Fatigue Syndromes, ME/CFS and Post-Covid fatigue and Post-Covid syndromes.

This is covered in detail in one of the ME Association’s most recent free leaflets which includes guidance on how best to manage Post-Covid.

In this latest leaflet we explain why the ME Association is so heavily involved in helping people with Post/Long-Covid and why we are, at this time, using terminologies which can be confusing.

2. Post/Long-Covid is not simply the same as ME/CFS.

However, some people with Post/Long-Covid have an illness and symptoms that are almost certainly the same as the Post-Viral Fatigue Syndromes (PVFS) that often precede a diagnosis of ME/CFS where an infection is believed to be the trigger.

Some people with Post/Long-Covid are being diagnosed with ME/CFS as their symptoms persist for more than 3-4 months and because they meet the ME/CFS diagnostic criteria.

The latest Free leaflet on Post/Long-Covid and ME/CFS

3. Research into and management of Post/Long-Covid and ME/CFS is a two-way process:

  • Existing research into the management of PVFS and ME/CFS will help to understand symptoms and pathology, treatments, and the best self-management options for people with Long/Post-Covid, and,
  • Research into Post/Long-Covid will help to improve our understanding of why some people develop these post-viral syndromes and may also help to determine effective treatments that could be applicable to people with ME/CFS.

This is why the ME Association is playing such an important role at a national level – including a recent briefing to the Office of the Secretary of State for Health and Social care – in relation to both research into and the management of Post/Long-Covid and ME/CFS.

The ME Association is campaigning, sharing our experiences, and providing timely and accurate information on ‘both’ these conditions and we will continue to do so because we believe it is in all our interests.

NICE Clinical Guidelines on ME/CFS and Post/Long Covid-19

(NICE = The National Institute for Health and Care Excellence)

1. The ME Association has always maintained that the current NICE clinical guideline on ME/CFS is unfit for purpose.

Partly as a result of our continuous campaigning, and the petition we organised in 2017, NICE changed their mind on the need for a review of the current guideline and decided to replace it with a completely new version that will be published in April 2021.

2. Dr Charles Shepherd (Hon. Medical Adviser, ME Association) is a member of the committee that is preparing the new NICE guideline on ME/CFS.

There are valid reasons in addition to the Covid Lockdown – especially the amount of evidence that has been received and that the committee has needed to consider – why progress on the new guideline has been delayed.

Free Leaflet: Reducing the Risk of Infection

3. The draft guideline – including conclusions and recommendations regarding diagnosis and management of ME/CFS – will be published for stakeholder consultation from 10 November to 22 December 2020.

Once stakeholder responses have been reviewed, the committee will prepare and then publish the final version of the new guideline in April 2021.

The NICE clinical guideline for ME/CFS is important. It provides a framework of care and recommendations to the NHS.

This is why the ME Association has been so invested in trying to ensure the new guideline better reflects the patient experience.

Illness Management

4. The ME Association has repeatedly asked NICE to remove the current recommendations on Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) or issue some form of health warning about them.

We do not believe GET has any place in a guideline on ME/CFS especially when unsuitable exercise regimes are suggested that have been shown to cause harm and hamper any recovery.

CBT should only be employed where it can help people learn to cope with ME/CFS, as it can people affected by many other long-term chronic illnesses.

CBT should not be about trying to convince people with ME/CFS that they have abnormal beliefs and behaviours, are simply de-conditioned, and need to be more active.

The ME Association recommends Pacing as the safest and most effective approach to activity and energy self-management of ME/CFS.

These recommendations are also based on patient survey evidence, for example:

Free Leaflet: The Lockdown & Employment

NICE is not willing to consider removing these treatment recommendations while the evidence is being reviewed by the committee for the new guideline on ME/CFS.

We will have to wait and see what the draft guideline looks like in November and, if appropriate, raise any additional concerns during the stakeholder consultation period.

5. Dr William Weir and Dr Charles Shepherd wrote to NICE in May to ask for some rapid guidance on post COVID fatigue etc. The result of this letter was discussed in July:

NICE issued a statement making it clear that GET was not recommended for people recovering from Covid-19:

6. NICE is now preparing rapid guidance on Long/Post-Covid-19 that will affect anyone attempting to recover from the virus.

The guidance was referred to NICE for development by NHS England and NHS Improvement. This will be a guideline affecting England and Scotland and it was announced by NICE and SIGN earlier this week:

Significant progress is being made with guidance of both ME/CFS and Post/Long Covid – but not at the pace that the ME Association would clearly have liked to see.

The ME Association

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