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maybe see it more as a cost benefit analysis. When does the probability and weight of risk outweigh that of reward. I've been in periods where I was thinking if I stay this bad for another 3 months I don't want yo live anymore. Imagine in a case like that I think it would be ethically dubious to...

Similar experience really. I mean like I haven’t walked for 2 years but a month ago there was an emergency and I needed to get to the bathroom quick so I stumbled my way and my legs worked suprisingly well. Had to cut off on basically any mental stimulation for the next couple days tho. (Usually...

I tore basically every ligament in my knee. But my experience would be the exact opposite. I was on crutches for a long time and couldn’t walk on it. But at the same time I was doing intense physiotherapy (9 hours a week) to get the leg functioning again. So I don’t know if that is...

I would actually like to see if compared to chronically ill people with other illnesses who are able to exert much less. Lupus, MS? Also, what about looking at the muscles in someone who’se been unable to use a limb for a long time? People with lower body paralysis maybe. Having that sort of...

Same article running in other major outlets https://www.derstandard.de/story/3000000268818/betroffenen-von-mecfs-oder-post-covid-bleiben-berufsunfaehigkeitspension-und-pflegegeld-oft-verwehrt https://oe1.orf.at/player/20250508/794313/1746684408000 (Apparently gonna be a deeper dive via radio...

I think it’s ridiculous they think we shouldn’t acknowledge someone’s illness if the illness label has no therapeutic value. Actually to be fair, that echos a lot of how medicine and especially psychiatry tend to treat us. “Either we can do something about it, or it’s not worth our time...

An Article in some big Austrian News Platforms: (Translated first bit, PVA= Pensions basically) https://orf.at/stories/3392681/ https://bsky.app/profile/constanzeertl.bsky.social/post/3lonetxkv3c2k

Total Paterternal Nutrition feeding through veins

Yep thats what i meant. edited my post cuz brain fog. (Also what an idea ro name two charities so deceptively similarly lol)

Action for ME are the ones behind SequenceME right? Sounds like donating to them has a chance of being useful I wonder if thing works outside the UK.

Thank you

ME Action is circulating around an open letter to try and get funding for the roadmap. Anyone can sign (including people outside US I think, and orgs) https://bit.ly/MEcfsRoadmap Edit (my comment): don’t necessarily feel very impressed by the roadmap upon a quick skim. Mentioning things like...

Ah but “you can make yourself healthy with simple lifestyle changes” myths live on. I’d imagine they’d be less common amongst disabled people but I generally haven’t noticed that. Actually the only place I feel like is a refuge from them is this forum and a small number of other activist places...

But thats a fad amongst the medical profession. Not the patients. Basically waxing and waning popularity of different diagnostic lables and mechanistic assumptions.

The only reason I shared it was it comes from a charity that AFAIK is one of the best for disabled people in general. So somehow making them aware of ME or PEM for their messaging could be useful.

https://bsky.app/profile/disrightsuk.bsky.social/post/3loivq4jcxk24 Seems their research is about how to promote physical activity in disabled people. Would be cool to have a pwME participate and challenge their views.

I remember seeing that in another study on ME specifically and they used it to claim all sorts of psycho BS. It’s one of the most ignorant blind applications of a questionnaire I’ve ever seen. Basically all the questions will be answered differently by a sick vs a non-sick person. And half of...

Has it? Maybe we’re switching from Pandemic to Endemic but the virus is still there and a major risk for many. That’s more of a reason to look into it no? If we only accept evidence that bolsters our pet theories and ignore the ones that don’t, progress will be difficult.

Did Doctors call AIDS a fad back in the day? It’s hard for me to see how they justify it. Post-Lyme Syndrome has been documented basically ever since we discovered Lyme. Same as Post-COVID with COVID. Is it a “fad” because they don’t know about it and it’s common? What is making doctors...