I have not read this because it's in Norwegian but still have opinions on questionnaires. Where all questionnaires fail is 1) they appear to be...
Reading up on the things microtubules / tubulin is involved in, is interesting. It's involved in the regulation of cellular energy metabolism and...
There probably exist patients who like being told that there is nothing wrong and that their illness is a figment of their imagination and that...
A name isn't meant to be a complete description and cannot be one. "syndrome" means "a group of symptoms which consistently occur together". A...
Lukewarm reception overall, and maybe this: "SEID is killing ME" https://www.meadvocacy.org/seid_is_killing_me Maybe with the next IOM report?
It's obviously PEMS.
I'm sorry, this is my idea :D
How about calling this illness "postexertional malaise syndrome"? It seems such an obviously good name.
I never understood what triggered my illness. I remember that it was initially episodic and very confusing because I often felt well enough to go...
A useful description is having to put in more effort than normally into ordinary movement and activities, and by that I mean at every step, when...
Systemic exertion intolerance disease wasn't so bad a name.
Perhaps the resistance to using the term fatigue has a lot do with aspects of English language and culture, as well as the history of ME (the...
@Snow Leopard do you have any idea what could make me so hungry after exertion? This occurs immediately or shortly afterwards. Increased hunger...
Thanks, I'll read this carefully now.
I don't have anything particularly insightful to contribute. Having done whole exome sequencing, whole genome sequencing would be a possible next...
That sounds interesting. Can you share a link? This seems to fit with what I've observed in other people who are on the milder end of illness:...
Mild PEM for me is just feeling somewhat worse on that day, and in particular feeling like I didn't sleep well, needing more rest. There is some...
Saugstad said two severely ill patients recovered in his new clinic (it's unclear if recovered meant no longer having illness). The treatment was...
[IMG] This pattern was generally also seen in other countries but I forgot to take a screenshot.
They were just shared in the webinar.
Separate names with a comma.
