Treating ME/CFS and Long Covid

I found the article 'Updates on long Covid and the brain' very interesting. I myself have ME and have volunteered with ME charities for years. Sadly, it is common for people to have received bad medical advice or a lack of support from the medical profession.

I know from my own experience how detrimental this can be. I came down with ME when I was 13 and was sent to see a paediatrician. Unfortunately, he (incorrectly) thought my ME was psychological. He told me to push through my symptoms and get back to school as quickly as possible.

I did not realise this at the time, but this advice is like telling someone with a broken leg to ignore it and use it as much as possible to help make it better. I naively followed his advice, particularly as I wanted it to be true that if I ignored my symptoms that they would go away. Unfortunately, this caused my health to crash completely. I remember being so exhausted that I did not even have the energy to roll over in bed.

My parents then got the correct advice from ME charities who said that I should pace my energy and listen to my body. I gradually started to improve, but the process is very slow. I have now had ME for 23 years and I am still not as well as when I first went to see that paediatrician. 

Unfortunately, I have come across many people who have been made worse by following the advice of medical professionals. One charity I volunteered with had crisis cases regularly where families had been inappropriately reported to Social Services because someone disagreed with how the families were treating their child's illness.

I think ME gets bad press because we do not necessarily look that ill. You will only ever see me when I have rested and have the energy to go out. People really seem to struggle with the idea that ME is a fluctuating illness. I can be well enough to have a meeting or go out, but then have to rest because I become so exhausted that I can no longer stand, tolerate noise, make decisions or think.

I can write this article, but I will get to the point where I can process the individual words, but no longer hold them in my mind long enough to turn them into a sentence.

I have also seen people who received the correct medical advice when they were diagnosed, and they have returned to an almost normal life, so I am disappointed to see that people with ME/CFS and long covid are going through the same unnecessary struggles I went through. After two decades, I hoped that things would have improved more.

So please, if you are working with people who have ME/CFS or long covid, make use of the available resources. For example, you might like to know of a CPD certified learning module on ME/CFS which also covers long covid.

It is free, takes an hour to complete and is very informative. It has also been promoted by leading ME charities. There's also:

Action for ME
Doctors with ME
NICE Guidelines on ME/CFS
ME research

Katherine Langford