I was incredibly strong and fit,” says Lucy Keighley. And she looks it, in the photo she is showing me, taken a few years ago. She is with her best friend, Lorna; they have just completed a 15-mile race on the North York Moors. “It was a brutal race,” she says. “But it was great. I was happy.” Today, although it’s quite dark in the room (she doesn’t get on well with bright light), I can see a tear rolling down her cheek. “I don’t know if I’m ever going to get back there.”
In the most recent findings by the Office for National Statistics, released in April, an estimated 2 million people in England and Scotland (3.3% of the population) self-reported experiencing long Covid, meaning symptoms that continued for more than four weeks after infection, although many reported their symptoms had lasted two years or longer. Of those, about 1.5 million felt their day-to-day activities were affected, while 381,000 said their day-to‑day activities were “limited a lot”. Worldwide, at least 65 million people are estimated to have long Covid.
This is the best summary I could come up with:
Your vocabulary has become limited; you find it hard to follow conversations, books, films and TV, instructions and directions.
There are more physical symptoms: breathlessness, joint pain, headaches, hair loss, chest pain, palpitations, tachycardia (fast heart rate), hearing loss, tinnitus, vertigo, constipation, diarrhoea, oedema (swelling caused by fluid buildup), hypoxia (low oxygen levels).
Having an effect on the immune system is another: “One of the things that we see quite a lot is activation of so-called mast cells, so that drives a lot of the allergic-type symptoms and rashes.” Then there is disorder of the autonomic nervous system, which is “the body’s control centre for all the stuff we don’t have to think about – digestion, breathing, blood pressure, heart rate”.
Work, the gym, vice-chair of the local rugby club, friends, a busy social life, gardening, decorating, reading, gigs, travel, cooking …
Lucy finds some comfort in online groups of long Covid patients, meeting people who are going through similar experiences and sharing tips.
We hear on social media groups that people have recovered and are climbing mountains and doing all sorts of things, but for me it doesn’t feel like that’s going to be possible and if I think about it I get really upset.
The original article contains 3,729 words, the summary contains 205 words. Saved 95%. I’m a bot and I’m open source!
Neurology Today: Are ME/CFS and Long Covid part of the same disorder?, Neurology Today, by Gina Shaw, 18 April 2024
We believe these are virtually the same disease, although there are some differences, and they should be managed and studied in multidisciplinary clinics focused on post-infectious syndromes.
We’re seeing an increasing number of studies suggesting that there is a large overlap between CFS and long covid. Historically we were able to observe CFS occuring in patients who suffered from glandular fever which is another moderately severe viral infection. I had glandular fever back when I was 18 and the actual virus felt awful but I fortunately did not experience many long term symptoms; although my partner at the time (who I’m now married to) said she noticed I was low energy for a fair few months afterwards.
I’m extremely curious about further research on the relationship between the two diseases. Potentially the increased interest/research from the relatively large number of people who have experienced long covid could lead to a breakthrough which helps people suffering from other fatigue disorders.
If you are genuinely curious, I’d invite you to join a community of Long Covid and ME/CFS patients and researchers online, and ask any questions you have.
Thanks for the link, might check it out later. To be honest this is more of a passing interest* since I have experienced both viruses and seemed to have some limited long term effects from glandular fever.
* as opposed to a passion
I think one of the first things you’ll be interested to hear is modern definitions of ME/CFS don’t note fatigue as the most disabling symptom but a disease process called post-exertional malaise, wherein a person’s entire disease can worsen (sometimes permanently) based on the amount of energy they use.
It’s really fascinating, A recent study by Wust et al. found muscle clotting and abnormalities following exertion in people with ME/CFS.
Also people with ME are the only known disease group to preform markeldy worse in specific markers on a 2 day CPET. Which would serve as a biomarker if it were not for the fact doing the test can worsen people’s disease permanently.
I highly recommend this summarising article on the issue: https://www.nationalgeographic.com/premium/article/long-covid-patients-exercise-bad-medicine