I have had M.E. (sometimes known as chronic fatigue syndrome) for just over 30 years. Although it was once known as “yuppie flu” and a few people still “don’t believe” in it, there is now no serious medical opinion that doubts that this is a potentially serious and life-changing illness. You probably know someone who has it. So why am I telling you this now?
Because M.E. is usually a post viral syndrome.
Many people (probably the majority) of people with M.E. can trace it back to a viral illness that they never really recovered from. This could be flu, a flu–like virus, glandular fever or similar. It is too early to tell whether Covid-19 will lead to an increase in cases of M.E. but based on other viruses it seems likely.
Will I get M.E. after Covid-19?
Most people don’t.
But simple precautions can reduce the risk. And since those precautions are the same ones you ought to take to recover from Covid-19 properly, it makes sense to take them.
We live in a culture where people are expected to recover quickly after illness and get on with it. We are expected to drive ourselves forward. A lot of information about Covid-19 suggests that after about a week or so you will either recover or get complications. But this may not be the case. Some people are finding that they are ill for longer periods. Older readers will remember when a period of convalescence was often recommended. Be gentle with yourself AFTER you have had Covid-19 as well as during it.
The key risk period is at the point at which you start to feel better and begin to think about doing things again.
How can I tell if I have M.E.?
In a sense it doesn’t matter. If you find your illness is going on longer than you hoped or expected, you should treat yourself very gently. A piece of advice often given is to do 80% of what you think you do comfortably.
Don’t expect help from the NHS right now. Everyone is busy and even in normal times there is no test for M.E. Doctors will generally only diagnose you if have had the condition for six months.
But here are some differences between M.E. and virus illnesses:
- M.E. is very variable. With viruses your symptoms tend to be pretty much the same throughout the day. But with M.E. you can feel better at 9 am, worse at 11, better at 3pm and worse at 6pm.
- M.E. affects both your body and your brain. You tend to feel physically unwell and fatigued as with a virus, but also concentration is very difficult. You may have great difficulty reading or watching TV. You may forget simple things like people’s names. You may also get some odd symptoms you did not get before. (I got tinnitus, which was very annoying)
- M.E. is actually related to your level of activity, although it may be difficult to judge this. You may be affected two days down the line by what you did today.
- Breathing problems are not generally a symptom of M.E.
The good news
Let me say it again, most people will not get M.E. after Covid-19. Even if you do, you can recover quickly if you do the right things.
What should I do?
If you find you are ill for longer than you expected and you do not have breathing problems (in which case follow the advice for Covid-19), or you make some degree of recovery but keep relapsing after you do things (including concentrating) then:
DO 80% OF WHAT YOU FEEL YOU CAN COMFORTABLY DO.
This may be a very small amount. Gradually increase your activity. If you start to feel worse, slow down again. Boredom is a risk. Try listening to soothing music or doing other things that do not tax your brain or body.
It looks simple on the page, but it can be very difficult. It is younger people who are more at risk of developing M.E. because they lead more active lives.
A stereotype of a person with M.E. is a woman who got it in her thirties, whilst holding down a demanding job and bringing up children.
They are by no means the only ones. Men get M.E. too, as do people with no jobs and people who do have not children. But there does seem to be a pattern that M.E. becomes chronic in people who have great demands made on them and feel unable to resist those demands. Women are taught to be carers and not to care for themselves and so are particularly likely to be in this position.
Perhaps your partner or children are now ill. Perhaps the things you postponed when you got ill are now making claims on you. Perhaps you are worried about your job. These things are all very serious and it is the easiest thing in the world to push yourself to meet those demands.
DON’T DO IT
Don’t struggle on however vital it may seem. Even if you just have post viral flop then taking it easy now, especially if you are someone whose idea of taking it easy is to do 20 things rather than 50 things in a day. The M.E. community is littered with people like that, including me.
However pressing the demands on you, remember that treating yourself very gently now, however hard it is, is better than having to live with this condition or something similar for 30 years (or more). How would your job/family/you cope with that? Do it now and you should recover. Leave it later and the chances are not so good.
I’m not a doctor
I’m just a person with experience of M.E. And you should remember that there is a dispute about the causes of M.E. For reliable information visit the web site of the M.E. Association or Action for M.E.
In this crisis be kind to others, but be kind to yourself too.
last revised 28/3/20