For those interested in learning more about these conditions, here is some info about my experiences with them, and some useful resources to take a look at! :
Myalgic Encephalomyelitis
I have had Myalgic Encephalomyelitis (or ME/CFS) for over 5 years now, and was diagnosed in 2022. It has varied between ‘mild’ and ‘severe’ and is currently ‘moderate’. Before ME/CFS I was very active. I was a gymnast, I volunteered, I went to school full time, and I spent lots of time with friends and family.
ME is a debilitating, lifelong, neuro-immune illness which severely reduces quality of life, and leaves at least 25% of patients in the UK home or bedbound, and 75% unable to work.
It is also sometimes known as Chronic Fatigue Syndrome, but this name severely downplays what the condition really is, and is also often miss-associated with Chronic Fatigue, which is not the same thing as ME/CFS.
Anyone of any age, gender, race, or level of health can get ME/CFS at any time. However, it disproportionately affects people AFAB, and is often caused by a viral infection (e.g: COVID, flu, glandular fever). It can also be caused by things like surgery, physical trauma, or severe stress.
After the triggering event, the immune system doesn’t go back to normal, affecting energy production, the nervous system, and other things.
Most of us with ME/CFS are trapped, forced to spend days on end in bed, causing loss in our hobbies, education, friendships, and futures. Even those with ‘mild’ ME/CFS suffer greatly, with a 50% reduction in normal activity. Those with ‘severe’ or ‘very severe’ ME/CFS are bed bound and often unable to tolerate light and sound, and too sick to sit up or eat. Severity levels can fluctuate.
ME/CFS is characterised by profound fatigue and a range of symptoms, but most importantly, Post Exertional Malaise, which doesn’t occur in any other condition. PEM is the significant worsening of symptoms that is disproportionate to the activity which causes it. This can be anything from a conversation or standing up, to looking at a screen or listening to music.
PEM is not simply relieved by rest, and can cause deterioration in patients. When a patient frequently over-exerts themselves during PEM, also known as ‘rolling PEM’, this can cause their baseline to get worse, moving them between severity levels.
ME/CFS has one of the lowest quality of life scores of any disease or illness, and affects an estimated 17-24 million people worldwide. Despite this, other diseases get 5-17x more funding and up to 20x more clinical trials.
Due to this, alongside stigmatisation and misunderstanding, ME/CFS is often disregarded, leaving patients to fight for a diagnosis, and has no approved treatments or cure.
What you can do:
- Share awareness posts
- Advocate for and listen to people with ME/CFS
- Learn about ME/CFS
- Be careful when it comes to spreading viral illnesses, especially to those who are immunocompromised.
- Address your own ableism. It’s often not on purpose, but is deeply rooted into society. Call it out when you see it!
- Follow disabled creators.
https://meassociation.org.uk/information/what-is-mecfs/
https://www.actionforme.org.uk/
Postural orthostatic Tachycardia Syndrome
https://www.potsuk.org/about-pots/what-is-pots
writtenbycaitlin 