ME refers to “myalgic encephalomyelitis” for those following at home.
It’s what used to be called “chronic fatigue syndrome”. Awful disease, I know a friend who has it and she can barely walk anymore.
Thanks for the info, I have heard of that but ME and its expanded name were new to me.
From what I understand the old label has fallen out of use because it wasn’t really consistent with the diagnosis criteria and led to a lot of confusion.
Seems reasonable, although the new name seems less clear at first glance.
Thanks! I thought it meant “Millenium Edition”.
Oh, I thought it was @[email protected]
I mean I did choose my username after the name of the illness
It was you all along!
What a tragedy. I hope they push out national changes so her death wasn’t a complete waste. Refusing a feeding tube is bananas.
Here in the US, the discourse around ME/CFS is changing significantly now that doctors are constantly encountering long COVID and sequelae of other viral illnesses. (Another great example of this phenomenon is the sequelae like eye and joint problems among Ebola survivors, which didn’t exist as a patient cohort until 2015.) It’s unfortunate that so many people have long COVID, but the volume of patients is definitely shaking up how doctors are thinking about “mystery illnesses.” When millions of people are following a pattern, and the sample sizes are big enough to prove things, things change. I hope that MS/CFS sufferers benefit from all of this new research and training.
I agree WinME was atrocious, but I didn’t realize it was still causing such suffering.
I’m rather amazed that this is still an issue. Reading this, at first, I thought that this was an article from 1980, not 2024. I remember reading in the early 90’s about ME, what it does, and there was already more knowledge available on the topic back then than is being shown by some NHS professionals today, apparently.
Yep. The problem is that it isn’t taught in med schools. So no-one really “knows” about it.
It’s a little disheartening to see that they kept wanting to view this as an eating disorder, and to then not provide nutrition. What difference does it make at that point? A significantly underfed patient needs nutrition. It matters not whether the cause is neurological or psychological. Shame.
