The risk of becoming seriously ill with Covid-19 has now fallen to very low levels and the World Health Organisation has declared that the pandemic is no longer a “global health emergency“. However, this is not the case for millions of people around the world who have failed to recover from Covid-19. Here in the UK, the Office of National Statistics estimates that there are well over a million people living with Long Covid. Many were previously fit adults and children who did not even have a serious initial infection.
Defined as still being symptomatic three months after the initial infection, Long Covid presents with a wide range of symptoms and severity.
Common symptoms that are linked to the way in which Covid-19 affected the lungs and heart in particular include breathlessness, cough, and chest pains. Other symptoms that have a direct link to the initial Covid infection include loss or taste or smell.
Most people with Long Covid also have a range of symptoms that are highly characteristic of other post-viral syndromes – ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) in particular. These include:
- Debilitating fatigue that is activity-induced, is exacerbated by exercise, and is not relieved by rest.
- Cognitive dysfunction – commonly known as ‘brain fog’ – where there are problems with short-term memory, concentration, attention span, word finding ability and information processing.
- Unrefreshing sleep and other sleep disturbances.
- Dysautonomia – problems regulating heart rate and blood pressure during changes in posture leading to orthostatic intolerance (difficulty remaining upright) and postural orthostatic tachycardia syndrome (PoTS) where there is a rapid increase in heart rate when moving from lying to standing.
- Post-exertional malaise/symptom exacerbation – a worsening of symptoms after activity that is often delayed by hours or days, is disproportionate to activity, and has a prolonged recovery time which may hast hours, days, or weeks.
When it comes to severity and outlook, some people with Long Covid are improving and returning to normal health. However, there are others who are not improving and experiencing a severe level of ill health and disability that is affecting all aspects of normal daily life – including their fitness to return to work.
So is Long Covid just the same as having ME/CFS? And if so why aren’t people being given the same sort of advice on activity and symptom management that people with ME/CFS receive?
The simple answer to the first question is no. Long Covid covers a wide range of clinical presentations and in some cases the symptoms are wholly or much more related to on-going problems with the lungs, heart, taste, smell etc.
But there’s another significant group of people with Long Covid whose symptom profile is dominated by ME/CFS type symptoms and meet with diagnostic criteria for ME/CFS. In fact, two research studies have reported that between 40% and 60% of people with Long Covid also meet ME/CFS diagnostic criteria. In this situation it may be far more appropriate, especially when it comes to management, to use the term post-Covid ME/CFS.
Whilst some doctors are now diagnosing post-Covid ME/CFS, others are reluctant to do so for a number of reasons:
Firstly, there is still a belief amongst some people with Long Covid, and health professionals, that Long Covid is a totally new condition that has nothing to do with ME/CFS.
Secondly, there is still a mistaken belief that ME/CFS is a psychosomatic problem.
Thirdly, medical practice has steadily moved away from clinical experience to an approach whereby illnesses are diagnosed and treated with what are often rather rigid evidence-based protocols that do not take patient evidence into account. This approach doesn’t help in situations like this where there is a low evidence base and symptoms cross many different medical boundaries.
Finally, many of the health professionals who are diagnosing and managing people with Long Covid do not have any clinical experience in diagnosing or managing post-viral disease. They also fail to appreciate that ME/CFS clinicians and charities have built up considerable experience in helping people with energy management, cognitive dysfunction, dysautonomia and all the other symptoms that occur in post-viral disease syndromes.
Fortunately, in some parts of the UK the overlaps between ME/CFS and Long Covid are being recognised and a new specialist referral service in the Isle of Man is combining ME/CFS and Long Covid: Elsewhere people are being referred from Long Covid Clinics to ME/CFS services. But there is still a long way to go before we get this right and people with Long Covid get the help they deserve.
The ME Association has a new and comprehensive guide to the clinical and pathological overlaps between ME/CFS and Long Covid.
With special #thanks to Dr Charles Shepherd, #medicaladvisor to ME Association for writing our #newsletter and sharing his #expertise with us at Supporting Healthcare Heroes UK. #mecfs #longcovid. Click here to subscribe to our newsletters on LinkedIn.