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@ME/CFS Skeptic Do you have any plans of creating a blog on MCAS like you did with hEDS and POTS. It would be a really useful resource.

Also (1) Most basic cognitive tests return normal results for pwME. (2) Good day/Bad day. To do these tests you probably have to be on a good day or become wired, and when those things happen pwME tend to report their cognition is almost normal.

Heard it on bluesky as well.

Photo gallery of the German Protests. Looks good. https://www.fatigatio.de/aktuelles/detail/impressionen-liegenddemo-berlin-hamburg-mecfs-awareness-day-2025

And the worst part is if you’re severe is you know the abuser has infinitely more endurance and energy to keep on spouting his beliefs while it takes much of your day to counter what they wrote in 15 minutes.

Do we have a thread on Vinod Kishola. I’m kind of lost on why he cares about ME?

Patients react to Trump’s closure of the long-COVID office: ‘I am horrified to think about care becoming less accessible’ https://prismreports.org/2025/05/14/patients-react-to-long-covid-office-closure/

Mine wasn’t good at first but after I set it to “sensitive” on sleep detection it’s done a good job. Generally though I wouldn’t trust it much.

Probably not. For a couple reasons but the one that stands out to me is “Horizontal Pleiotropy”. Ie. a single SNP may influence many different things and we might only know about some. So assuming the cytokines play a causal role in ME/CFS according to some SNP variations linked to cytokines...

Yet as a very severe person who had months where all I did was lay still all day and daydream. It was remarkably good at telling when I was alseep or not.

And many of those who get better end up going back to the “irresistible” old ways. À la Garner “model patient”.

Since the first study was done on so little people, I’d wait till phase 2 before worrying. It’s really likely any of the observed patterns could just be randomness with such a small cohort.

In my experience i wouldnt trust them to diagnose sleep problems. But they definitely get the trend right like if im sleeping more they will reflect that or if i wake up less often during my sleep they will reflect that as well.

The Sick Times Secretary Kennedy promises to support Long COVID treatment research in Senate hearing, says son is “dramatically affected” https://thesicktimes.org/2025/05/14/secretary-kennedy-promises-to-support-long-covid-treatment-research-in-senate-hearing-says-son-is-dramatically-affected/

If it weren’t a prevalent belief within the medical establishment we’d be hearing it referred to as an “alt med cult”.

Triple donation matching to ME/CFS charities in the US via a tech worker who has severe ME. https://bsky.app/profile/chromatowski.bsky.social/post/3lp5kjkwuts2e Valid for the next two weeks I think. you need to send them a reciept of your donation for them to match.

Brian Hughes on Bluesky https://bsky.app/profile/bmhughes.bsky.social

Say if we find a mechanism, will they continue defending these beliefs? Will they quietly drop out à la Wessely? Will they pretend to have been on the right side all along à la Greenhalgh? Probably a mix of all three I think. I’m curious to see personally.

Taking the title: Yes we need hope. And people like those who write the article directly dash our hopes by diverting resources away from us being taken seriously and research that might progress our understanding into long disproven dogma ie. “zombie ideas”. Also I hate how...

Do they end up acknowledging that Maeve tried reframing her beliefs and the cbt and whatnot and she only deteriorated after it?! Because their framing suggests they think they could have saved Maeve or something.