Virginia Water Magazine, Edited by Roger Kohn, October 2020
Dr Charles Shepherd went to Pocklington School with the editor of this magazine. He is Medical Adviser to the ME Association and has spent nearly 40 years dealing with people who have post viral conditions, including ME/CFS.
Why aren’t people getting better from COVID-19?
This time last year nobody had even heard of COVID-19 (Coronavirus Disease 2019). But the infection was well established in the Chinese bat population and possibly in Pangolins. It then jumped from animals to humans via the notorious Chinese ‘wet food markets’ where live animals are purchased for food.
The COVID pandemic has now become the most important health emergency in our lifetime. The worldwide numbers are huge – 21,732,472 cases and 770,866 deaths being recorded on the World Health Organisation dashboard at the time I write this article – and are still growing steadily in India, South Africa, and many parts of South East Asia and in South America.
Here in the UK the peak was reached during a four-week period between early April and early May. Lockdown succeeded in flattening the peak and reducing the number of new daily cases to the fairly low level that is occurring now. And this is a situation that is likely to remain till some pint in 2021 when, hopefully, a safe and effective vaccine will be available.
In the meantime, there’s a small tsunami of people who’ve had COVID-19 and just aren’t getting better…
It’s not surprising to find that people who were seriously ill in hospital are being left with complications that are going to require long term rehabilitation in specialist units like Headley Court in Surrey.
What is surprising is the number of people who self-managed COVID-19 at home and are just not getting better. Many are previously fit young adults who are now have what is often a mixture of debilitating fatigue, pain, brain fog, fevers, shortness of breath and palpitations. This is having a devastating impact on all aspects of their daily life.
“I continue to have chest pain and a burning sensation in my lungs more than 10 weeks after first becoming unwell… I have no underlying health conditions and am normally very fit and healthy… now feel exhausted just carrying a laundry basket up a flight of stairs.”
“Frustrating is the best word to use describing my recovery period. It has been ten long weeks for me since my first COVID-19 symptoms emerged. I was acutely ill for one month (but not ill enough for hospitalisation), got better for a few weeks, then the shortness of breath returned on a daily basis along with elevated temperatures, fatigue, loss of appetite and some mental confusion.”
“The brain fog scares me; I worry that I’ll forget something important. I can’t sequence activities as well as I used to or transition between activities like I used to (I need this for work). I have to concentrate really hard on driving.”
As a doctor who has spent most of his working life dealing with people who have post viral syndromes and then going on to develop ME/CFS, this is nothing new. What is surprising is the severity of these symptoms and the way in which they often fluctuate so rapidly from hour to hour and day to day.
Why is this happening?
Viral infections can often leave people feeling ‘under the weather’ for a week or so. But there’s clearly something far more serious going on with COVID-19, which is turning out to be a really nasty virus that can attack almost any organ in the body through two main mechanisms.
Firstly, by causing what’s called a ‘cytokine storm’ – where the body’s immune system releases a large amount of chemicals called cytokines, which are responsible for all the aches and pains that we all experience with a dose of flu or any other viral infection.
With COVID, the ‘cytokine storm’ is causing severe inflammation and damage in the lungs – which is why some people ended up on ventilators. This lung damage can then persist.
Secondly, by causing blood clotting problems and the formation of blood clots – which can then cause heart attacks, heart rhythm disturbances and even strokes.
The virus, or the powerful immune system response to it, can also affect the brain, gut, kidneys, and skin. COVID-19 can be a very serious multisystem disease.
As to why it’s also causing debilitating fatigue, and ME/CFS like symptoms, this is more uncertain. But it may well be due to the over active immune system response and the effects of the virus on the brain.
One bit of good news is that doctors have become far better at treating people who are seriously ill with COVID using drugs like dexamethasone.
However, when it comes to managing post-COVID fatigue syndromes there are no simple drug treatment solutions.
So, we need to go back to good old-fashioned convalescence with plenty of rest and relaxation along with small, flexible and very gradual increases in both physical and mental activity.
This needs to be combined with a good balanced diet, keeping hydrated, probably avoiding caffeine and alcohol, and looking after your mental well-being.
Keeping in touch with your GP is important – as well as making use of the various sources of online information and guidance that are being produced for people with post-COVID.
- My son Patrick, who works at the Royal Brompton Hospital in London, has made a very moving video about life in the hospital during COVID.
- ME Association Guidance on the Management of Post-COVID Fatigue Syndromes – This is a free download.
- The Full Range of Free ME Association Guidance on COVID-19, Reducing the Risk of Infection, ME/CFS, Employment Issues, Benefit Changes, and, Post-COVID Management.
- The Virginia Water article will appear in full in the next edition of ME Essential Magazine which will be with members of the ME Association by 13 November 2020.
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