Clinician’s Letter to NICE Results in Statement on Graded Exercise for Post-Covid-Syndrome

July 13, 2020

Last Friday, the National Institute for Health and Care Excellence (NICE) issued a short statement about Graded Exercise Therapy (GET) in the context of COVID-19.

Dr Charles Shepherd.

This was in response to a detailed letter to Dr Peter Barry (Chair) and Baroness Ilora Finlay (Vice Chair) of the NICE guideline committee (and copied to NICE) that was prepared by Dr Charles Shepherd and Dr William Weir several weeks ago and which was signed by other members of the NICE ME/CFS clinical guideline committee.

The letter pointed out that recommendations in the current (2007) NICE guideline regarding the use of GET in ME/CFS could cause serious harm if applied to people who are failing to recover from COVID-19 and who are experiencing Post-Covid Syndrome and other complications.

The letter also pointed out that there is a need for guidance from NICE about the use of Pacing as a sensible and safe alternative to Graded Exercise Therapy in respect of Post-Covid Syndrome.

Dr William Weir.

The ME Association, knowledgeable physiotherapists and occupational therapists have all produced helpful guidance in this regard, but the message about the dangers of Graded Exercise Therapy, and the increased need for individualised, patient-centred, care is not being taken up by official sources of information.

Dr Shepherd, Hon. Medical Adviser to the ME Association, will be attending a NICE guideline committee meeting this morning (Monday 13th July), and in response to this statement from NICE he had the following to say…

There are three separate issues here:

1.  Should people with Post-Covid Syndrome be recommended to follow the current (2007) NICE guidance on GET for people with ME/CFS?

As already noted, a letter was sent to NICE to state that this guidance is not appropriate for people with Post-Covid Syndrome and is highly likely to worsen their symptoms.

NICE have acknowledged that their current management recommendations for ME/CFS are not applicable, however, I would have liked to see a more emphatic statement regarding the potential dangers of Graded Exercise Therapy.

2.  Should NICE produce management guidance on Post-Covid Syndrome?

As already noted, we have stated that NICE should be producing appropriate guidance on activity and energy management for people with Post-Covid Syndrome.

The letter we produced pointed out that as the ME/CFS guideline committee has spent a great deal of time discussing Graded Exercise Therapy, and we have been preparing recommendations on activity and energy management in relation to precautionary management strategies, this new guidance could be used as a basis, with appropriate modifications, to help people with Post-Covid Syndrome.

3.  Should the current (2007) NICE guideline recommendations on GET for people with mild or moderate ME/CFS be withdrawn, or carry a health warning?

The ME Association has repeatedly made our position clear on this:

As there is a large amount of consistent patient evidence reporting that Graded Exercise Therapy can cause serious harm to people with ME/CFS, this recommendation should be withdrawn from the current clinical guideline.

NICE has consistently been unwilling to do so while the current research evidence relating to GET is being reviewed by the ME/CFS guideline committee and the new recommendations are being considered.

The NICE Statement about GET in the context of Covid-19

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.

July 2020

Further information

“If you are a GP and dealing with people with this fatigue, please note my personal experience that Pacing is essential, and GET is harmful.”

Professor Paul Garner
Professor Paul Garner.

Professor Paul Garner, Liverpool School of Tropical Medicine, made the following comments to 10,000 UK doctors on a Covid-19 forum at the weekend:

“Colleagues, clearly in ‘long haul’ COVID there is a spectrum of symptoms, conditions, damage and need for recovery.

“Personally, I have noted how often the illness symptoms recur if I do too much physical activity or mental activity (I am now on day 114) and how this can be mitigated by careful Pacing, as defined by the CFS/ME literature.

“I also believe many ‘long hauler’ patients don’t realise this relationship of relapse with exertion (although I know it doesn’t apply to all).

“The CURRENT UK NICE Guidelines are 13 years old. They recommend Graded Exercise Therapy; and for Pacing, they say ‘health care professionals should advise people with CFS/ME that, at present, there is insufficient research evidence on the benefits and harms of Pacing,’ (NICE, 2007).

“On Friday afternoon, NICE posted an unsigned PDF saying that, in the context of GET, ‘it should not be assumed that the recommendations apply to people with fatigue following Covid-19’. They make no statement about Pacing.

“I am concerned this confusion risks sending muddled messages to GPs. I suspect GPs though are good at making up their own minds about these things!

“If you are a GP and dealing with people with this fatigue, please note my personal experience that Pacing is essential, and GET is harmful.

“And more broadly as a community of doctors, can we somehow push for clearer guidance for us all, with useful materials?

“With my Covid-19 fog, cutting through the plethora of advice about Pacing on the internet is a bit overwhelming!”

The ME Association ME/CFS and Covid-19 Leaflets

The following leaflets and letter have been written by the ME Association's Dr Charles Shepherd (Hon. Medical Adviser) and Ann Innes (Welfare Rights Adviser).

They should provide you with essential information and links to external resources during this pandemic and national lockdown.

You can download each one (or all of them) by clicking the images below, or you will find them in the ME Association Website Shop.

We will keep them updated periodically and as the lockdown restrictions continue to change.

The General LeafletVulnerable Status LetterCovid-19 and PVFS
Reducing Risk InfectionChanges to BenefitsEmployment

The ME Association

Please support our vital work

We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.

If you would like to support our efforts and ensure we are able to inform, support, advocate and invest in biomedical research, then please donate today.

This image has an empty alt attribute; its file name is Donate-MEA-16.12.19.png

Just click the image opposite or visit our JustGiving page for one-off donations or to establish a regular payment. You can even establish your own fundraising event.

Or why not join the ME Association as a member and be part of our growing community? For a monthly (or annual) subscription you will also receive ME Essential – quite simply the best M.E. magazine!

ME Association Registered Charity Number 801279

Shopping Basket