Search results

:banghead:

At least they've stopped using that line about how 'at worst', ME/CFS can make people 'feel' they aren't getting proper care. Perhaps someone's explained how insulting it was.

I'd bet money that the phrase "As a large language model" appears somewhere in there.

That was my reaction too, as an autistic person and the parent of an autistic child.

(Incidentally I first read the study title as "Inventing Associations Between Central Sensitivity Syndromes and the Autism Spectrum", which sounds about right.)

Something that is frequently talked about by autistic people is 'sensory seeking', ie being undersensitive to stimuli (compared to other people), hence some physical repetitive behaviours or 'stimming' (repetitive movements or fiddling) to provide a consistency of sensory feedback. I've no idea...

Couple of things from a quick skim of the PDF: That suggests their participants were on the milder end of LC, because those with more severe symptoms would have been more likely to already be on a GP or specialist care pathway and so ineligible for the study?

In the rubber hand illusion, as in other illusions, the illusory sensation is almost immediately extinguished as the brain corrects its momentary error. The initial conditioning doesn't cause the participant to go on believing that the rubber hand is their own. You could just as well argue that...

Higher doses have some nasty side effects, which would be problematic both in terms of wanting to avoid harming trial participants and also possibly creating confusion in the data.

GPs and other HCPs often seem to have enough trouble understanding the facts of what life is like for pwLC and ME, without becoming confused with yet another 'it's a bit like this except not really' condition.

and conversely, if you can grit your teeth and hide the fact you're in pain, that obviously means the pain isn't that bad. There's no "correct" way to give an external idea of your internal state that will stop someone else dismissing it if that's what they want to do.

Bookmarking this answer for the next time I try and talk to my GP about why my ferritin is low but other rbc results are OK!

There have been occasions when I've collapsed in those scenarios but it's been more due to dizziness and a sort of momentary loss of information processing from the world around me - I briefly become unsure of what I can see and hear, or which way is up. It feels like my legs stop working at...

I hadn't heard of Patricia Murray before. https://www.liverpool.ac.uk/people/patricia-murray Interested to see that she began her career as a nurse. Perhaps this helped her to see medical claims in terms of their impact on patients rather than on the researchers' careers.

Saw this in a Mastodon thread today about the World Conference on Research Integrity. https://mastodon.online/@tomstafford/114301415246307147

Researchers missed a trick not including healthy controls. If caffeine also improves the walk distance, perceived fatigue and so on of control participants, then they've found a treatment that can support healthy people being rehabilitated from, um, healthiness.

Did they check whether all the confirmed ME/CFS diagnosed patients passed this test?

OK! Yes, probably safest.

I'll try and do this later.

And followed up the subjects for a year, so we could see how many *actually* recovered enough to resume their old lives, and how many ran on fumes for a few months and then crashed.