ME/CFS NICE guideline review committee members and others (including ME Research UK Patron and Chairman of Forward-ME Group, the Countess of Mar) have written an open letter to NICE expressing their concerns 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 is all the more pressing in that Covid-19 ‘long-haulers’ have 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).
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.
As the guideline is currently being updated, it is possible that these recommendations may change. The evidence for and against graded exercise therapy is one of the important issues the guideline committee is considering. NICE plans to consult on the updated guidance in November 2020.
Yet, the NHS’s ‘Your COVID Recovery site’ has a section dedicated to ‘Getting Moving Again’ which extols the virtues of exercise – “the more time spent being physically active, the greater the health benefits” with but three caveats
- if you experience any extreme pain, shortness of breath or dizziness, stop and seek advice.
- Following this, activity and exercise advice, is at your own risk. You are agreeing to undertake these activities voluntarily and as such assume all risk of injury to yourself.
- If you feel unwell before, during or after, stop immediately and seek advice.
There is, however, no reference to NICE’s clarification.
Professor Stephen Powis, NHS in response (below) to other emails and representations assured the writers
I lastly reassure you that the ‘What is fatigue?’ section on the Your Covid-19 Recovery website suggests seven ways to approach fatigue, that includes relaxation, sleep, eating well, prioritising activity, delegating and keeping an activity diary, which are equally emphasised to provide a balanced approach.Letter 13th August 2020 – Professor Stephen Powis reproduced below.
It is clear that many post COVID-19 patients are experiencing a number of serious symptoms – symptoms which mirror some of those experienced by those diagnosed with ME/CFS and are looking for strategies to assist recovery. Professor Stephen Powis, NHS England’s National Medical Director quantified the problem but at least followed NICE’s clarification on use of GET.
Of people who have been critically ill, 10% could develop chronic fatigue. Although some people who have had COVID-19 may experience post-viral fatigue, there does not appear to be an association with post-viral fatigue and diagnosis of chronic fatigue syndrome (CFS) or myalgia (sic) encephalomyelitis (ME). For those who do experience chronic fatigue, there is conflicting evidence regarding benefits or harm of pacing. Graded exercise therapy (GET) should be offered to those with mild or moderate CFS and only provided to those who choose these approaches.Letter 13th August 2020 – Professor Stephen Powis reproduced below.
ME Research UK, like all those affected by ME/CFS awaits eagerly the results of the NICE guideline review and, in particular, the status of Graded Exercise Therapy and CBT.
First – Text of the Letter from NICE guideline review committee members and other as follows:
Appropriate management of post COVID-19 fatigue and reducing the risk of developing ME/CFS
Tuesday 26 May 2020
Dear Peter and Ilora
We are writing to register our concern in relation to the likelihood of an increase of new cases of ME/CFS in the aftermath of the current COVID-19 pandemic. Many of us have already heard from patient support organisations around the country, as well as from concerned GPs and other health professionals, about an increasing number of patients with post-viral fatigue (PVF) or a post-viral fatigue syndrome (PVFS). This is hardly surprising in view of the fact that fatigue is a major clinical feature of COVID-19 and research indicates that around 10% of people who contract an acute and prolonged viral infection fail to recover fully and develop symptoms of PVFS (1). Furthermore, we are well aware that bad management of PVF and PVFS is an important factor in the progression of PVF and PVFS to ME/CFS.
There is further cause for concern as it is also apparent that COVID-19 recovered patients whose clinical presentation is consistent with PVF or PVFS, or suggestive of ME/CFS, are being encouraged by some GPs to undertake graded exercise, as set out in the 2007 NICE guideline. Some patients are even doing this of their own accord, and realising rapidly that their exercise tolerance is a fraction of what it used to be. Unfortunately, some hardy souls still “push” themselves in the mistaken belief that the exercise will make them fitter, as might be expected if they were simply deconditioned. The result is the exact opposite, and this sequence can then lead to a bedbound state of muscular weakness with some people so badly affected that they require tube feeding, often for a protracted period.
The scientific understanding of this phenomenon is now well understood. The problem being an exercise-induced progressive reduction in anaerobic threshold, resulting in post-exertional malaise – as identified by Mark Van Ness (2) and Betsy Keller (3). Their work has also shown conclusively that the underlying pathology is physical, and not psychological. Unfortunately, it remains apparent that many GPs and other health professionals (particularly neurologists) still believe the dogma that ME/CFS has a psychological basis and the muscular weakness is falsely attributed to deconditioning consequent to inactivity. The inactivity is attributed variously to exercise phobia, false illness beliefs, anxiety and/or depression. What follows is a recommendation to graded exercise, frequently with antidepressants and/or CBT, often with the catastrophic results explained above. Typically such patients are not seen again, for obvious reasons, and the bland assumption is made that they have recovered, whereas the reverse is true.
We therefore wish to register our very serious concern that the mistakes we have described are likely to be repeated with new cases of ME/CFS following COVID-19. The 2007 guideline, because it remains extant for bureaucratic reasons, is thereby potentially disastrous for people developing ME/CFS in the wake of the current COVID19 pandemic.
We feel very strongly that it is now critical that the current NICE guideline development group provide some clear guidance in respect of management, sooner rather than later. This should be with particular respect to activity management and the dangers of graded exercise therapy for COVID-19 recovered patients who have PVF or PVFS, or are showing signs of developing ME/CFS.
We appreciate that all work on current NICE guidelines has been put on hold. However, NICE is involved in guidance relating to COVID-19 and warning against dangerous activity management is very relevant to the management of people who are ‘failing to recover’ from COVID-19 infection.
NICE guideline committee members
Other signatures who wish to add their support to this letter
Countess of Mar – Chair, Forward ME Group of charities
Associate Professor Nicola Clague Baker – School of Allied Health Professions, College of Life Sciences, University of Leicester (also representing Physios For ME)
Dr Eliana Lacerda – Clinical Associate Professor, CureME Group, London School of Hygiene and Tropical Medicine
Dr Karl Morten – Director of Graduate Studies and Principle Investigator, Nuffield Department of Women’s & Reproductive Heath
Dr Nina Muirhead – Dermatologist specialising in dermatologic surgery and oncology at Buckinghamshire Healthcare NHS Trust.
Dr Sue Pemberton – Therapy Director and Specialist Occupational Therapist, Yorkshire Fatigue Clinic
Dr Nigel Speight – Consultant Paediatrician
- Hickie I et al. Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study. British Medical Journal, 2006, 333 (7568): 575
- VanNess M et al. Subclassifying chronic fatigue syndrome through exercise testing. Medicine and Science in Sports and Exercise, 2003, 35 (6): 908-013.
- Keller BA et al. Inability of myalgic encephalomyelitis/chronic fatigue syndrome patients to reproduce VO2 peak indicates functional impairment. Journal of Translational Medicine, 2014, 12, 104: doi: 10.1186/1479-5876-12-104.
Second – Letter from Professor Stephen Powis, National Medical Director, NHS England and NHS Improvement, 13th August 2020
NHS Guidance on the Management of Post COVID Fatigue
Thank you for your recent emails on post Covid-19 fatigue and for your interest and advice on the Your Covid-19 Recovery website. The website acknowledges the range of symptoms and wide fluctuation in symptom severity that people post COVID report, and provides general advice for those who believe they have had Covid-19 and still have symptoms. I would like to reassure you that the content on Your Covid-19 Recovery was developed with a wide range of health care professionals and academics, including representation from colleagues with experience in managing post viral fatigue such as the Royal College of Occupational Therapists. It was also developed with input from people who have experienced Covid-19 including those with ongoing symptoms.
You refer to the NICE guideline ME/CFS (CG53) which was published in 2007. This guideline was consulted but is clear that the advice on fatigue provides for people with myalgia encephalomyelitis and chronic fatigue syndrome should not be translated to the post viral fatigue after Covid-19.
‘…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.’
NICE is currently considering its recommendations on graded exercise therapy and their advice about may subsequently change. NICE plans to consult on their updated guidance in November 2020, and should the guidance recommend a different approach this would of course be reflected in the information provided on the Your Covid-19 Recovery Website.
The Your Covid-19 recovery website reflects the current guidance (most recently updated on 3rd August) from NHS England and NHS Improvement on the after-care needs of inpatients recovering from COVID-19:
Of people who have been critically ill, 10% could develop chronic fatigue. Although some people who have had COVID-19 may experience post-viral fatigue, there does not appear to be an association with post-viral fatigue and diagnosis of chronic fatigue syndrome (CFS) or myalgia (sic) encephalomyelitis (ME). For those who do experience chronic fatigue, there is conflicting evidence regarding benefits or harm of pacing. Graded exercise therapy (GET) should be offered to those with mild or moderate CFS and only provided to those who choose these approaches.
Could I lastly reassure you that the ‘What is fatigue?’ section on the Your Covid-19 Recovery website suggests seven ways to approach fatigue, that includes relaxation, sleep, eating well, prioritising activity, delegating and keeping an activity diary, which are equally emphasised to provide a balanced approach.
We will continue to monitor closely and respond to the emerging evidence and consult with clinical and academic colleagues, and experts in the field of Covid-19 to ensure that the information on the Your Covid Recovery website represents the best current evidence-based advice.
Professor Stephen Powis
National Medical Director
NHS England and NHS Improvement