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Literally thought this would be a Paul Garner quote given the headline lol

Sometimes I dream of those sensory deprivation chambers where you soak in water. On a related note I’ve been thinking of realistic (?) QOL increases I’d wish for in the next couple years, and one I’ve thought is the idea of taking a bath going from “overwhelming exertion” to “restful”.

Perhaps it could be changed to “250’000” which is also common in europe (or atleast here in switzerland) but prevents confusion for people who are used to “.” meaning a decimal.

Great article. Really appreciated the inclusion of null results as well. Thank you so much for doing these every year. Just a tiny formatting thing

No rinse soap Those sort of spray bottle things you can put water inside and spray yourself with water shaving my head A tub to dip my feet in sometimes even if its while laying down in bed Same thing for my head even if its just while laying on floor the good ol’ washcloth And most...

Good catch

I know this is old, but I‘m wondering if this kind of thing could be why some people report „complex chronic illness“ following COVID vaccine. (Of course its really hard to tell what seems genuine or what seems a couple anecdotes pushed out of proportion given the politics around vaccines today).

Postural Orthostatic Tachycardia With Chronic Fatigue After HPV Vaccination as Part of the “Autoimmune/Auto-inflammatory Syndrome Induced by Adjuvants” Abstract We report the case of a 14-year-old girl who developed postural orthostatic tachycardia syndrome (POTS) with chronic fatigue 2...

(somewhat off topic) But atleast very large language models like the newer OpenAI ones, are very good at repeating patterns. In fact they guess the next token (couple of letters / word) based on the previous one. So something like myalgic encephalomyelitis/chronic fatigue [Next Token] the next...

That error is definitely human. A chatbot is better than humans at not missing words ahah. But the phrasing might have been inspired or taken by an LLM. That short sentence “fake deep”. Conclusion style is very typical of LLM’s.

Nope but the google popup lists it as synonyms or at least used to so might explain why its included here. That sounds a little like the new chatgpt model ahah. (Not saying its what wrote it but the conclusion style phrasing reminds me).

Interesting. @DHagen Sorry you go through that but also glad to hear I’m not the only one. I take something similar (Daxidorexant), but only after I wake up. Perhaps I should be taking it earlier in the night.

I definitely have this it’s so awful. I made a thread about it. https://www.s4me.info/threads/poisoned-feeling.43442/

I have a new garmin watch. And I’m quite aware these watches are imperfect at tracking sleep so take what I say with a grain of salt. But the pattern i’ve started to notice in my sleep data is I consistently wake up for 20+ mins after each time I have REM. (Which kind of fits with the vivid...

Totally agree. But if politicians followed logic on ME/CFs I think the world would already be pretty different for us ahah. tho i guess in this guess its high reward for little waiting so things are better

The only study of IVIG with very good methodology (double blind placebo controlled randomised) found a null result. It‘s fair to criticise the study for being old. But the diagnostic criteria they used is actually rather robust for that time. I don‘t think another RCT would be a bad thing, but...

For what it‘s worth I‘ve been unable to speak for 2 years due to speaking being above my PEM capacity.

As a member who recently joined explained wonderfully. I don‘t think „healthcare journey“ is helpful terminology.

Ah I found what had given me the impression Jonathan has suggested IVIG might have marginal benefits. https://www.s4me.info/threads/a-proposed-mechanism-for-me-cfs-invoking-macrophage-fc-gamma-ri-and-interferon-gamma-2025-edwards-cambridge-and-cliff.44348/post-612718

IIRC there was a thread on S4ME a year or so ago where Jonathan mused about a certain mechanism and said if that mechanism was true it might explain marginal effects of IVIG. I don‘t think you imagined it out of thin air. But I may be wrong as well.