By Dr Charles Shepherd, Hon. Medical Adviser, The ME Association
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.
Extracts
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:
- 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.
- There is still a mistaken belief that ME/CFS is a psychosomatic problem.
- 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.
- 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. It can be downloaded FREE from the website shop.
Supporting Healthcare Heroes UK (SHH)
This is a new charity that has been established to support healthcare workers with Long Covid across the UK. They aim to provide the healthcare professionals who cared for us when we needed them and are now facing an uncertain future – financial, professional, and personal – with the support they need. SHH are currently seeking Trustees. If you think you can help, or would like to find out more, then please get in touch.