The National Institute for Health and Care Excellence (NICE) has released a document entitled “interim findings”, stating that the recommendation of graded exercise therapy for mild and moderate ME/CFS should not apply to people with fatigue following COVID-19. They note that the existing guideline was published in 2007, many years before the pandemic, and that they are aware of concerns around graded exercise therapy.
Further, NICE states that one of the important issues the committee rewriting the guidelines are considering is the evidence for and against graded exercise therapy. This is the most prominent warning from NICE to date that the evidence base for graded exercise therapy does not justify its wholesale use.
NICE has also added a warning to the front page of the existing 2007 guideline that remains in place until the new guideline is finalised:
“NICE is aware of concerns about graded exercise therapy (GET) for people who are recovering from COVID‑19. Please see the guideline in development page for information on our update of this guidance, which will include reviewing the evidence on GET.”
For years NICE has been under pressure to remove the recommendation of graded exercise therapy from the guidelines for ME/CFS. The evidence-base in favour of graded exercise therapy has been challenged by researchers, clinicians and patients across the world. It has also been contradicted by repeated evidence that it harms a majority of people with ME who undertake it, such as a study of over 16,000 respondents and a more recent survey by Forward-ME. The US Centers for Disease Control and Prevention (CDC) has already removed GET from its treatment recommendations as a result of the Institute of Medicine report, which found no benefit of GET but did find a risk of harm.
Throughout the process of updating the ME/CFS guidelines, #MEAction UK has sustained a continuous campaign demanding NICE takes immediate action on the harmful recommendation of graded exercise. We have argued that where harm is taking place, swift and decisive action is justified. The fast response COVID-19 guidelines prove that bureaucracy can be set aside at times of national crisis, such as this.
There has always been a moral dimension to our request – we think it unconscionable that people may be harmed because of delays in procedure that forget that there are people’s lives at stake.
This culminated in a 6-metre-long card with 2006 signatures and 1200 messages being delivered to NICE earlier this year – reinforcing the human stories behind the harm people with ME have experienced in undergoing graded exercise therapy.
#MEAction UK warned in the cover letter to this card, and in more recent communication with NICE, that the continued recommendation of graded exercise therapy could potentially now harm thousands of people with long term symptoms post-COVID.
To see action finally being taken by NICE is encouraging.
However, this statement does not come without its problems. It refers the reader to guidance by NHS England that still mentions graded exercise for fatigue post-COVID in patients who were hospitalised, albeit alongside “energy conservation techniques, pacing, prioritisation”.
Ultimately we believe this is a positive step. NICE did not have to make a statement and if the committee considered that graded exercise therapy was safe and appropriate, then this statement wouldn’t be necessary.
But once again we must call for NICE to go further. The warning should cover people with ME, not just those with post-COVID fatigue, and it should state that graded exercise therapy harms the majority of people with ME who undertake it. Furthermore all guidance on long term symptoms post-COVID should reference the potential for inappropriate exercise to harm people developing ME. We will continue our correspondence with NICE to raise these issues.
Below is the full statement from NICE:
NICE is aware of concerns about graded exercise therapy (GET) for people who are recovering from COVID-19. NICE’s guideline on ME/CFS (CG53) was published in 2007, many years before the current pandemic and 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.
NHS England has recently published guidance on After-care needs of inpatients recovering from COVID-19 that includes advice on fatigue.