Explanations from ME charities plus recent news articles.
New Free ME Association (MEA) 24 page Leaflet: The ME Association Guide to Post-Covid Fatigue Syndromes and Post-Covid ME/CFS.
Dr Charles Shepherd, Hon. Medical Adviser, of the MEA writes -
Back in April the ME Association became aware of an increasing number of people who had been ill with COVID-19 and were not improving, even after several weeks. Almost all had been self-managed at home with an illness that mostly varied from mild to moderate in severity, but did not require hospital admission. Most had debilitating fatigue, sometimes with continuing COVID-19 symptoms involving the lungs or heart in particular. Some had symptoms that are more consistent with the sort of post-viral fatigue syndromes that may precede ME/CFS.
Five months on and we are now in a situation where some people are being given a diagnosis, or a possible diagnosis, of post-COVID-19 ME/CFS. In April the ME Association published a free guide to post-COVID fatigue and post-COVID fatigue syndromes. This information has now been fully updated to cover all the developments that have occurred since then. The ME Association has longstanding experience in the management of post-viral debility, post-viral fatigue syndromes and post-infection ME/CFS.
This new and comprehensive leaflet should be of help to people in relation to the management of post-COVID fatigue and some aspects of post-COVID syndromes where they overlap with ME/CFS symptomatology.
- At present, we have no firm indication as to how many people are experiencing persisting ill health following COVID-19. However, if current estimates of around 10% of people who were home managed are accurate, this could translate into around 60,000 people with some form of post-COVID ill health that has persisted beyond a month.
- According to Tim Spector, professor of genetic epidemiology at King’s College London, around 12% of sufferers report symptoms to the Covid Tracker app for longer than 30 days. One in 200 says the effects last for more than 90 days.
- Long-COVID, post-COVID fatigue and post-COVID fatigue syndrome are all being used as diagnostic labels.
- Many have debilitating fatigue as a primary symptom.
- Some have respiratory, heart and other symptoms that are the same, or very similar, to the acute infection – i.e. breathlessness, palpitations, intermittent fevers, loss of taste or smell.
- Others have symptoms that are very similar to those seen in post-viral fatigue syndromes that can follow any infective illness and may precede ME/CFS.
- Some have a combination of post-viral fatigue syndrome symptoms and acute COVID-19 infection symptoms.
- In cases where post-COVID syndrome symptoms have persisted for more than three months, and are consistent with those of ME/CFS, a diagnosis of post-COVID ME/CFS should be considered.
Action for M.E. (AfME)’s article - M.E., long Covid and getting the right support.
AfME explain -
Forward ME has published an open letter addressing concerns and highlighting best practice with regards to rehabilitation of people with long Covid who are experiencing post-viral fatigue.
UPDATE An Early Day Motion for debate has now been tabled on this: scroll down for more, including a template you can use to ask your MP to support this.
Since the start of the outbreak there have been many voices in our community warning about the possibility of a spike in cases of M.E./CFS, following Covid-19 infection. A previous spike in post-viral fatigue was seen following the SARS outbreak (also a type of coronavirus).
Action for M.E. and other charities have raised concerns about some of the newly-published guidance aimed at supporting people with long Covid, based on addressing "deconditioning" with graded exercise therapy (GET), despite the potential for long Covid to lead to post-viral fatigue, which may develop into M.E./CFS.
We are working as part of Forward ME to challenge such guidance wherever it appears, and highlight good practice. Led by Physios for M.E., the group has produced a joint open letter to support this.
It says: "Instead of the usual ‘reconditioning’, we recommend that these patients should be helped to adopt a paced approach to activity management. This is used to avoid symptom exacerbation or post exertional malaise, a primary symptom of M.E., which can result in greater incapacity and even relapse. Similar issues also seem present in people struggling to recover from Covid infection [...] We feel it is vital that they do not receive graded exercise therapy (GET) as a matter of course because M.E. research and patient experience has shown it to be ineffective and harmful in many cases."
Recent News Articles
BBC Radio 4 on Tuesday 29th. Long Covid -
Adam Rutherford explores the emerging science behind what’s come to be known as ‘long covid’.
Radio 4 , 11.00 am on Tuesday 29 September, plus 4.00 pm on Tuesday 13 October
The Mirror on 26 September -
Brits describe their long-Covid symptoms that cause crippling pain for months
The Guardian on 26 September -
I used to be Ms Covid Casual. But with a sick sister, that’s changed. What I’ve learned about long-term Covid-19 has forced me to mentally reframe the risk factors and the way the future could play out
Daily Mail on 24 September -
Boris Johnson is urged to take action on 'long Covid' and formally recognise debilitating side effects of the disease that can last for MONTHS after recovery
The BMJ blog on 23 September -
The health, wellbeing, and employment arrangements for people with Long Covid remain unaddressed. Layla Moran, MP and chair of the APPG on Coronavirus, says that awareness of Long Covid, and its seriousness, is too low
BBC on 21 September -
Long Covid: 'My fatigue was like nothing I've experienced before', By Natasha Lipman, BBC News
TVNZ on 20 September -
Long-term fatigue dubbed the 'hidden toll' of Covid-19. They say some of the symptoms of what’s currently known as ‘long Covid’ mirror a debilitating condition, seen in other viruses in the past, known as chronic fatigue syndrome or ‘ME’. The little-known and mysterious illness, myalgic encephalomyelitis, is usually preceded by a viral infection and can last for years.
Long Covid.Org -
On 28th August 2020, LongCovid.org and partners sent a letter to Jeremy Hunt, Chair of the Health & Social Care Committee, to ask for the UK Government to assemble a multi-disciplinary Long Covid taskforce
For further Coronavirus (Covid-19) information specifically for people affected by ME/CFS see further posts on the blog.
Take care, and stay safe everyone.
• Action for ME • B.B.C. • Coronavirus (COVID 19)
• M.E. Association • National Newspapers