Dr Charles Shepherd, Hon. Medical Adviser, ME Association.
Update: 29 September 2020
The ME Association has received a similarly unsatisfactory reply from Professor Chris Whitty, Chief Medical Officer & Chief Scientific Adviser to the Department of Health and Social Care.
We remain very disappointed by these two responses to our letter.
We raised a number of important concerns about the new NHS England guidance on activity management for people with post COVID-19 fatigue.
This self-help management guidance mixes up exercise and pacing. It really does need looking at again. We did try…
The ME Association recently raised serious concerns with NHS England about their latest advice for people attempting to recover from the Covid-19 infection.
These concerns were echoed yesterday in an article in The Times by Sean O'Neill (‘Warning over conflicting medical advice to coronavirus recovery patients‘). The Countess of Mar and I both contributed to the piece.
Increasing numbers of people are reporting that recovery is not happening within the expected timeframe.
They continue to experience symptoms that are in some cases unique to Covid-19, but are also similar to Post-Viral Fatigue Syndrome and ME/CFS.
The response from Professor Stephen Powis at NHS England to the ME Association's letter is very disappointing and dismissive of our concerns.
It fails to deal with any of the specific issues I raised about the totally inappropriate advice being given in relation to exercise (e.g. going on an exercise bike if you cannot go for a walk) in this new guidance.
It is incorrect to say that there is no link between post viral fatigue states and ME/CFS – most people with ME/CFS predate the onset of their illness to an acute infection from which they fail to recover.
We know from past history with SARS that it was followed by an ME/CFS illness in a significant proportion of cases.
And, while there is now a large amount of consistent and robust evidence relating to the harmful effects of graded exercise therapy (GET), this is not the case for pacing – which almost everyone with ME/CFS finds beneficial.
There is no evidence of harm associated with pacing. There is no controversy over the safety of pacing.
“The NHS is urging people to exercise at a time when many, just like people with post-viral ME, need to rest, recuperate and pace themselves,
“NICE is cautioning against the use of graded exercise for long-term Covid patients, yet it still allows that treatment for people with ME, despite the clear parallels with post-Covid fatigue.
“The medical profession would do well to remember the mantra of ‘first do no harm’.”The Countess of Mar, quoted in The Times article yesterday
The ME Association 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.
- Covid-19 and ME/CFS: A Lockdown Summary
- Covid-19 and ME/CFS: Vulnerable Status Letter
- Covid-19 Reducing the Risk of Infection
- Covid-19 Key Points about Employment
- Covid-19 – Welfare Benefit Changes
- Covid-19, Post/Long-Covid, Post-Covid Fatigue Syndromes and ME/CFS
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.
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