Dr Charles Shepherd, Hon. Medical Adviser, ME Association.
I am aware that some people with ME/CFS have a number of concerns about the amount of time and effort we are devoting to people with Post-COVID Fatigue and Post/Long-COVID Syndromes.
In particular:
— the possibility that people with post-COVID fatigue and post/long-COVID syndromes are going to receive preferential treatment from the NHS for very similar health problems that occur in people with ME/CFS.
— people with post-COVID fatigue and post/long-COVID syndromes are being cautioned against the use of graded exercise treatment (GET) whereas NICE has refused to remove this treatment option from the current clinical guideline for ME/CFS.
— the considerable amount of research and research funding that is being directed at post-COVID fatigue and post/long-COVID syndromes compared to what has happened to government-funded research into ME/CFS.
I agree that these are all valid concerns.
However, there is a lot of overlap between post/long-COVID symptoms and the sort of Post-Viral Fatigue Syndrome (PVFS) that often precede a diagnosis of ME/CFS.
And a number of post/long-COVID people are now developing post-COVID ME/CFS.
The ME Association has a duty to provide these people with information and guidance on management and support where needed.
We know that this guidance is very much appreciated by those with post/long-COVID, and those who have symptoms that are suggestive of ME/CFS or are now receiving a diagnosis of post-COVID ME/CFS.
It is also clear that some of the research initiatives that are now taking place to help understand the cause of post/long-COVID syndrome, the immunological and cytokine studies in particular, will be of benefit to people with ME/CFS.
Finally, the ME Association has repeatedly made our position clear to NICE in relation to the use of GET in the current clinical guideline – see further information below.
To explain in a bit more detail I have prepared an update on where we currently are in relation to the overlap between ME/CFS and post-COVID fatigue and post/long-COVID syndromes.
ME Association Update:
Post-Covid Fatigue, Post/Long-Covid Syndromes and Post-Covid ME/CFS
For the past four months the ME Association has been providing free information, guidance and support for people with ME/CFS who are at risk of COVID infection, those who have contracted the virus, were recovering, and for others who developed chronic symptoms suggestive of a post-viral fatigue syndrome and possibly ME/CFS.
The reports that I have been receiving over the past few months indicate that we are dealing with a complex group of clinical presentations in the groups of people with post/long-COVID syndromes i.e. those whose COVID symptoms remain unresolved or who develop more chronic symptoms with associated disability.
In very simple terms it’s probably helpful to divide post/long-COVID syndromes into three defined groups – although there is quite a lot of overlap and not everyone will neatly fit into any one group.
As far the number of people who are affected by a post/long-COVID syndrome – we just don’t know.
Some reports have suggested that around 10% of people who self-managed the COVID-19 infection at home are still affected by symptoms despite the infection having passed.
This would be in accord with research relating to post-viral fatigue syndrome following infection. But my own feeling is that the figure for COVID is significantly higher.
Post/Long-COVID Groups
1. Post-COVID intensive care/hospital care syndrome
This group is largely confined to people who have been sufficiently unwell to require hospital-based treatment. They often had significant respiratory and/or cardiovascular complications whilst in hospital and now have other problems that are frequently seen in people who have been treated in intensive care and had to be ventilated.
These problems can include loss of muscle mass (people lose 3% of muscle mass per day whilst in intensive care), cognitive dysfunction (from reduced levels of oxygen to the brain), loss of taste and smell and complications relating to ventilation tubes, catheters etc. Some have also had gastrointestinal and neurological involvement. Not surprisingly many people in this group also have debilitating fatigue.
People in this group are likely to require a prolonged period of rehabilitation – preferably under the care of a multidisciplinary hospital-based team that is used to dealing with respiratory, neurological, and cardiovascular rehabilitation. The new rehabilitation unit at Headley Court in Surrey is a good example.
2. Post/Long-COVID Self-Managed Syndrome
This group consists of people who appear to be still suffering from all the initial symptoms of COVID-19. Most people in this group were self-managed at home and often had no significant contact with health professions while they were ill.
They still have COVID-19 symptoms such as breathlessness, palpitations, fevers, loss of smell or taste. These symptoms are often accompanied by debilitating fatigue – but not always.
In some cases, the on-going symptoms are fairly constant. In others, the overall clinical picture fluctuates – sometimes quite dramatically.
They may have days, or parts of a day, when they feel reasonably well. Then the symptoms recur – sometimes following undue exertion, but sometimes for no apparent reason.
3. Post/Long-COVID Fatigue Syndrome and Post-COVID ME/CFS
This group have a range of symptoms that are more consistent with the sort of Post-Viral Fatigue Syndrome (PVFS) that we are used to seeing in people who go on to develop ME/CFS after meeting the diagnostic criteria and symptoms have persisted for 3-4 months.
In addition to debilitating activity-induced muscle fatigue, they have muscle and joint pains, cognitive dysfunction (i.e. problems with short term/working memory, concentration, information processing), orthostatic intolerance (i.e. problems in remaining upright, feeling dizzy or faint), unrefreshing sleep and the cardinal feature of ME/CFS – post-exertional malaise (PEM).
Some people in this group, especially where symptoms have persisted for more than three or four months, are now being given a diagnosis of post-COVID ME/CFS, or possible post-COVID ME/CFS by their doctors. This is not surprising given the fact that ‘fatigue’ is a very prominent symptom of COVID-19.
SARS (another coronavirus infection) produced an ME/CFS-like illness in around 10% of cases when it occurred in 2002/3; and COVID 19 triggers the release of immune system chemicals called cytokines (especially interleukins 6 and 10 and sometimes in excessive amounts) that are also thought to play a key role in the causation of ME/CFS.
Three months ago, when I first became aware of post-COVID fatigue and these post/long-COVID syndromes I prepared some comprehensive ME Association guidance on both diagnosis and management.
Key Principles of Management
In our current state of knowledge, this guidance is based on the basic principles of managing any post-viral fatigue syndrome/PVFS and good old-fashioned convalescence:
- Pacing, planning and prioritising physical and cognitive activities – where increases in activity levels need to be gradual and flexible and interspersed with periods of rest and relaxation. Graded exercise therapy is NOT appropriate here.
- Good quality sleep – an excessive sleep requirement (hypersomnia) is a normal part of the body's healing process following a severe infection and should not be interfered with.
- Good nutrition and fluid intake, including avoiding or cutting down on caffeine and alcohol.
- Maintaining mental well-being.
- When/where possible – a very gradual and modified return to work or education.
- Maintaining contact with a GP.
There is no sound evidence to support the use of drugs, supplements, or vitamins in managing PVFS – exceptions being symptomatic relief for pain and to aid sleep when achieving quality sleep is a concern.
Further Information
Along with all our other information on COVID-19, this ME Association leaflet is available as a free download. It discusses the situation, the symptoms and management options: COVID-19 and PVFS.
ME Association position on Graded Exercise Therapy (GET) in ME/CFS treatment: Clinicians letter to NICE results in statement on GET.
Useful summary from Professor Frances Williams on findings from the COVID symptom tracking App and the role of cytokines in causing post viral fatigue: The Conversation: Why are some people experiencing long-term fatigue?
British Medical Journal blog from Professor Paul Garner, whom I am working with, on his experience of developing post-viral fatigue and ME/CFS-like symptoms following COVID-19 infection: BMJ: Covid-19 and Fatigue, A game of snakes and ladders.
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.
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| The General Leaflet | Vulnerable Status Letter | Covid-19 and PVFS |
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| Reducing Risk Infection | Changes to Benefits | Employment |
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