Search results

Everything looks wonderful except for HADS.

I personally had bookmarked the entire website to read through in the hope my illness improved to the point that was possible. It was such a bit of fresh air to have someone challening ”therapy” not through prejudice or alt med, but through well scientifically argued data.

Hope you’re okay @SunnyK (Not sending this to pressure you to reply, just more thinking of you since you were (are?) in a bad crash.)

Apparently some ME awarness day protesters in Germany were attacked and injured by a far right group. From the News From Germany thread:

The severe/very severe Chapter is suprisingly well done. Especially this part: is great. It’s a shame they don’t really acknowledge that sentence when recommending counselling and stuff.

The MedUni Wien released a blueprint for the implementation of proper care services for pwME (15 pages, in German). https://public-health.meduniwien.ac.at/fileadmin/content/OE/public-health/Primary_Care_Medicine/PDFs/2025_04.23__Empfehlung_MECFS_Behandlungsstelle.pdf (No energy to summarise or...

I mean this framework isn’t doing anything like replacing researchers or outsourcing critical thinking really is it? The way I understand it its just more seeing if the AI offers any sort of rabbitholes/different thought patterns or ways of exploring the results that can then be looked at. So...

Not necessarily a condition, just simply that words researchers use in the “results” section (“syndrome”, “fatigue”, “female predisposition”, “elusive pathophysiology”, “multisystem”, “viral persistence”), even if not immediately evocative of ME might get the LLM to activate lots of the same...

Interesting to note this study was funded by the Patient Led Research Collaborative.

I am also of the opinion that “brain fog” might not be very fruitful terminology for us. Like “fatigue”, it seems to have seeped into common usage to describe general slower brain when sleepy or on drugs. While the “brain fog” we experience is vastly more disabling.

that clause “contributing to systemic inflammation” is just so… wrong. As you wrote, contributing is an unwarranted assumption here. Inflammation has not been generally found to be part of ME. And since it hasn’t been found, there is nothing systemic about it.

The ME Research UK summary was a little disappointing in my opinion. I don’t like their co-option of DGBI which IMO is a problematic label. Akin to “functional”, “bps”, “psychosomatic”, etc. Visceral hypersensitivity as a label assumes that the pain signals are overreacting to normal internal...

Merci pour tout ton effort @Martine . :)

I hope the Putrino slide is taken out of context and it’s a hypothesis, not stating a “fact”. Though to be honest Putrino is not known for properly hedging claims, he’s more known for making BioBS type claims…

It makes watching videos impossible for me. I suppose thats a good thing though I’m probably overexerting by watching videos.

Does anyone have their eyes randomly go out of focus often. This has been bothering me for a while… I’m assuming like every new symptom I get it probably has something to do with PEM…

Check the posts I put right above,

All I remember is a Long COVID doctor asked me about how I viewed my family dynamics — very much in confidence — (This was before I learnt about the psychobehavioural BS). So I kind of innocently answered the question. But then my GP recieved the letter and forwarded it to my parents. Which...

It feels like the rehabilitation/psychology/psychiatry fields are desperate to make themselves relevant to ME/CFS. I’m sure this could be useful to small subset of pwME. Probably especially children with mild or moderate forms of the condition. But to the average person. All we need to know is...