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Forward-ME Group – Graded exercise therapy for ME/CFS and COVID-19

As ME Research UK reported, concerns had been raised over the broad-based advice given by some healthcare professionals to those with longer-term symptoms arising from COVID-19 – in particular fatigue – and recommendations anecdotally being given to increase exercise to aid recovery. The need for clarification was all the more pressing in that Covid-19 ‘long-haulers’ had reportedly been looking to self-manage their continued fatigue, with many being drawn to resources prepared for those with ME/CFS – including NICE’s guideline on ME/CFS (CG 53).

On 22nd July 2020 NICE issued a statement on Graded Exercise Therapy and its use in recovery from the virus and cautions against use of GET for those with post-COVID-19 fatigue which stated

It should not be assumed that the recommendations apply to people with fatigue following COVID19. The recommendations on graded exercise therapy in CG53 only apply to people with a diagnosis of ME/CFS as part of specialist care, and CG53 is clear that this should be part of an individualised, person-centred programme of care, with GET only recommended for people with mild to moderate symptoms.

Margaret, Countess of Mar, Chairman of Forward-ME Group has e-mailed Paul Crisp, National Institute for Health and Care Excellence on behalf of members of Forward-ME concerning the use of Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy (CBT) for COVID-19 patients. The letter and response are as follows –

Dear Paul

I write on behalf of members of Forward-ME.

You may be aware that a letter from several members of the Guideline Development Group for ME/CFS and others was sent to NICE several weeks ago. This expressed the signatories serious concerns relating to the failure of NICE to counter advice that graded exercise therapy (GET) and cognitive behaviour therapy (CBT) could be used in rehabilitation of COVID-19 patients in a similar way to the advice of CG 53. We note that the interim statement made clear that the current recommendation for GET in relation to ME/CFS stands but it is not transferrable to people with post COVID-19 fatigue syndromes. 

We find it difficult to understand how this position can be maintained as NICE is implying that GET is safe for people with ME whilst it is not safe for post COVID-19 fatigue. There is now a wealth of scientific evidence of the biomedical presence of post exertional malaise in patients with ME indicating that it is not a psychological symptom. There is also the evidence of several studies based on patient questionnaires which show that harms result from GET prescribed to ME patients. We are sure that we do not need to remind you of the importance that should be ascribed to patient evidence in the light of the recent report by Baroness Cumberlege about health professionals failing to act when patients make repeated warnings about the harm of specific treatments. 

We are also particularly concerned that exercise therapy is recommended in the new draft guideline for pain. Many patients with ME suffer significant pain which has no apparent cause. We note that ME is not one of the conditions for which exercise is not recommended. We will be responding to the draft guideline to that effect.

With the likelihood of many post COVID-19 patients who have not had a firm diagnosis complaining of post exertional malaise and being advised to exercise, it is now imperative that the equivocation stops and the possibility of harm is avoided. NICE is the main source of advice relating to treatment and carries the responsibility for advice to the wider professions.

Email – Margaret, Countess of Mar, Chairman, Forward-ME 10th August 2020

In response and on behalf of Mr Crisp

Dear Margaret

Thank you for your email on behalf of Forward ME. 

Our statement does not imply any judgement on the safety of any of the recommendations in the ME guideline if applied to patients with post-COVID-19 fatigue. As NICE has not looked at the evidence, or made any recommendations, for the management of post-COVID-19 fatigue, we cannot make a judgement on what may or may not be effective in people with this condition. The intention of our statement is to clarify that the recommendations in the ME/CFS guideline should not be applied to people with post-COVID-19 fatigue as they do not fall within the scope.

NHS England has published guidance on the after-care needs of inpatients recovering from COVID-19. The guideline committee chair raised some concerns about the content of that guidance with NICE, we have been liaising with NHSE and they are continuing to review their guidance.

With respect to the guideline in development for chronic pain, the main focus of the guideline is chronic primary pain. This is pain that persists or recurs for longer than 3 months and can’t be accounted for by another diagnosis, or where it is not the symptom of an underlying condition. The recommendations in the chronic pain assessment and management guideline do not apply to people with ME/CFS. 

We continue to work to support the ME/CFS guideline committee to proceed as promptly as possible with the development and publication of the new guideline on ME/CFS.

Email Helen Fin obo Paul Crisp – 18th September 2020

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