Update 14 August 2020
The ME Association has received a response from from Professor Stephen Powis, National Medical Director, NHS England, to the letter we sent below.
You might also like to read the ME Association’s reaction to this very disappointing and dismissive reply from NHS England.
Dr Charles Shepherd, Hon. Medical Adviser, ME Association.
The ME Association has written to Professor Chris Whitty and Professor Stephen Powis to express our serious concerns about the new NHS England Guidance on the Management of Post-Covid Fatigue and Post-Covid Fatigue Syndromes.
- Professor Chris Whitty is the Chief Medical Officer at the Department of Health, and Professor Stephen Powis is the National Medical Director, NHS England.
The following letter was sent this morning
Dear Professor Whitty and Professor Powis,
The ME Association (MEA) provides information and guidance to the public and health professionals on the management of post-viral fatigue syndromes (PVFS) and myalgic encephalopathy/chronic fatigue syndrome (ME/CFS).
Especially in regard to activity and energy management. We believe that this is the most important aspect of managing PVFS and ME/CFS.
During the past four months we have been dealing with an increasing number of requests for help from people who have post-Covid fatigue and post-Covid fatigue syndromes.
Not surprisingly, we are now starting to deal with people who are being diagnosed as having post-Covid ME/CFS.
According to Dr Anthony Fauci, a similar situation is expected to happen in America:
- America’s top covid doctor turns ME/CFS into a subject for general discussion as the pandemic deepens | 10 July 2020
What is particularly striking is the wide fluctuation in symptom severity that many people with post-Covid fatigue syndromes report.
And the way in which even small amounts of physical activity, which exceed their current limitations, can easily produce a rapid and severe exacerbation of their fatigue and other symptoms.
However, this is a well-recognised feature of PVFS and ME/CFS and is known as a post-exertional malaise (PEM) resulting in symptom exacerbation.
The BMJ blogs from Professor Paul Garner, with whom I am working, are a good illustration of the problems people are facing in relation to this sort of symptom fluctuation and achieving the correct approach to activity and energy management:
Back in April I produced some MEA guidance which linked our existing guidance on post-viral fatigue and post-viral fatigue syndromes to post-Covid fatigue:
This leaflet forms part of our portfolio of website information on Covid-19 as it relates to people with ME/CFS. I have also produced a recent update on the work we are doing with clinicians, researchers and people who have post- Covid fatigue:
The Royal College of Occupational Therapists has produced guidance which makes very similar recommendations to our own in relation to activity and energy management:
This guidance is endorsed by the Intensive Care Society.
It was therefore very disappointing to find that the MEA had not been consulted during the preparation of the new NHS England guidance on post-Covid fatigue and post-Covid fatigue syndromes.
And while the authors clearly have a lot of expertise in rehabilitation, it does seem very odd to have not included a health professional with good clinical expertise in the management of PVFS and ME/CFS to be part of this group.
Although parts of the NHS guidance are consistent with our own recommendations, we have a number of serious concerns about the recommendations on activity management in the ‘Getting Moving Again’ section.
Firstly, the NHS guidance fails to properly acknowledge that post-Covid fatigue covers a large and heterogeneous group of people in relation to both clinical presentations, severity and fluctuation, and complex causal factors.
As noted in my own summary, cardiovascular, respiratory, neuromuscular, immunological, and other complications can all play an important and overlapping role in causing post-Covid fatigue.
In other cases, the clinical picture is more consistent with the sort of PVFS symptomatology, possibly cytokine mediated, that often precedes ME/CFS.
The key point here is that in our current state of knowledge we just don’t know why debilitating fatigue is such an important and common feature in both acute and post-Covid infection.
Secondly, this heterogeneity of clinical presentations, along with their severity and fluctuation, is not adequately reflected in the guidance which comes across as “one size fits all”.
Thirdly, and most important of all. The guidance fails to acknowledge that people with any significant degree of post-Covid fatigue need an initial period of convalescence involving rest and relaxation which might then be combined with a very gradual and flexible approach to increasing physical and cognitive activity.
Instead, the emphasis in the NHS guidance is all about “Getting Moving Again” and stressing progressive increases in exercise related activity, goal setting, and strategies that we would not recommend to people with other types of post-viral fatigue (e.g. use of an exercise bike and only stopping an activity when pain becomes extreme).
Crucially, the guidance fails to emphasise the importance of establishing a safe baseline of activity (which for some people means reducing activity levels) and then progressing with very gradual increases in physical and cognitive activity which take account of a person’s daily energy envelope during the crucial early stages. This is a process known as pacing – it is widely regarded as a very safe and effective way of managing activity and energy in a post viral situation.
People with continuing and debilitating post-viral fatigue should normally only move on to a more active strategy, which involves what most people understand as exercise rather than physical activity, when a period of sustained improvement has occurred.
There are real dangers of causing a further relapse or exacerbation of symptoms in exercising beyond limitations in post viral fatigue states. There is also a potential for real and lasting harm, including increasing the chance of going on to develop ME/CFS, by advising people to start using an exercise bike when they cannot go for a walk.
I do not have specialist expertise in cardiology. However, I have attended several webinars on Covid-19 at the Royal Society of Medicine where cardiologists have given presentations.
One of the points they make is that there is a significant degree of unrecognised thrombotic involvement in both small and large blood vessels, arterial and venous.
A very cautious approach to exercise therefore needs to be taken, especially where there are symptoms such as a raised pulse rate or palpitations in these post-Covid fatigue patients. I would be surprised if this would include the use of an exercise bike.
These are some of the over simplistic and potentially harmful statements covering exercise from the NHS England Guidance:
“Why is doing some exercise important?
“If you have an exercise bike at home this might be a good alternative to walking, particularly on wet days.
“It is important to get back to your previous level of activity or possibly aim to be more active!
“By being active and starting some exercise you become stronger and fitter
“You may feel more tired afterwards, but it’s important to keep walking to build up your fitness and eventually feel less tired.
“You may notice your tiredness increase… should improve the stronger you get; this is a normal response…
“Over time regular exercise will help you manage…
“The more time spent being physically active, the greater the health benefits.
“If you experience extreme pain…….stop and seek advice.“NHS England Guidance on Management of Post-Covid Fatigue and Post-Covid Fatigue Syndromes (July 2020).
Fourthly, I do not believe it is appropriate to try and avoid the consequences of people coming to harm from carrying out inappropriate exercise (e.g. using an exercise bike whilst symptomatic) by including the disclaimer:
“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.“NHS England Guidance on Management of Post-Covid Fatigue and Post-Covid Fatigue Syndromes (July 2020).
Making patients responsible for ‘all risk of injury’ caused by a treatment that is being recommended by the NHS is completely unacceptable. I cannot recall seeing anything like this disclaimer in any other NHS guidance.
There is now a large amount of patient evidence on the harm that can be caused by inappropriate guidance on exercise during both the pre-diagnostic stage of ME/CFS (i.e. PVFS) and for people who have been diagnosed with ME/CFS.
And the ‘First Do No Harm’ report from Baroness Cumberlege makes it very clear that health professionals can no longer ignore patient evidence on the harmful effects of treatments they are receiving.
The National Institute of Health and Care Excellence
Finally, it should be noted that NICE has issued a statement to make it clear that their current recommendations in the 2007 clinical guideline for ME/CFS on graded exercise therapy (GET) are not applicable to people suffering from post-Covid fatigue syndromes:
- NICE cautions against using graded exercise therapy for patients recovering from COVID-19 | 21 July 2020
I hope you will carefully consider the points I have raised. The ME Association would be very happy to contribute to any revision of this NHS guidance.
I am sure that the clinicians, physiotherapists, and occupational therapists that we are working with on Post-Covid Fatigue and Post-Covid Fatigue Syndromes would also be willing to help.
Dr Charles Shepherd
Hon Medical Adviser, ME Association
The ME Association
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