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So basically useless.

What a sad waste of money and effort. Why does every country and rehab research team think they have to keep re-researching psychobehavioural rubbish? All they are doing with their so called research is tweaking what is essentially a failed model. 4.7 million dollars allocated, and less than a...

Apathy is a pejorative term to use here. If they were truly apathetic about the task, they wouldn't have volunteered to take part in the research. What about exhaustion, inability to focus eyes and brain on the task, slowed reaction times, feeling very unwell and in pain. Difficulty making...

I'm not going to read beyond the abstract. What are mechanism oriented approaches?

Thank you @Mark Vink for your extensive efforts in producing this article. I note that it is not intended as a systematic review that assesses the validity of research findings, but rather an overview of what little research there is that focused on severe, very severe and extremely severe...

Does the use of terminology I have bolded here worry anyone else? To me it raises the unhelpful and damaging term 'effort preference' from the NIH Walitt study. In both this paper and the Walitt one, the observations don't warrant the implying of voluntary lack of effort. Surely the brain...

Do you mean it was deleted recently without you being informed?

That sounds like OMF spreading their activities too thinly. I thought OMF were meant to be focused on funding biomedical research.

Dr Clague Baker is one of the @PhysiosforME I replied: Hi Nicola, I can't understand why you are promoting this quack protocol. Where is the evidence? Nicola responded: Still trying to get my head around it. As we know, v little of what is on offer for pwme and lc is evidence-based but it does...

I was shocked to see this on Bluesky

That doesn't surprise me. But what relevance does this have to ME/CFS?

I'm puzzled by the author's repeated use of PACE trials' as if there were more than one. This suggests to me a lack of knowledge that is concerning in someone writing on the subject. It's surely possible to get around defamation problems with Wessely by quoting his own words provided the...

Have you managed to identify anything triggering this? I have not had such violent shaking but I do get cold much more easily and find it harder to warm up for the rest of the day after I have had a shower. Even if I manage to warm up nicely for a while, and stay wrapped up in bed, I get cold...

I have been exploring a bit on the EDS society website. According to them classical, vascular and other rare types of monogenic autosomal dominant EDS have a prevalence of around 1 in 20,000, and known connective tissue proteins affected. hEDS they reckon at around 1 in 5000, with an autosomal...

The introduction clearly states they are talking about the rare, 1 in 5000, monogenic type EDS, which includes different forms including hypermobile and vascular.

An interesting story but... I think there is a great need to be wary about using AI for medical information and consultation. The case described here is the specific situation of two doctors seeking help in diagnosing and supporting their child. That is very different from the more common...

It's linked here: https://www.s4me.info/threads/science-for-me-fact-sheets.43310/post-606969

I wonder whether an FOI to Wessely's university would enable someone to access his 17 page 'review'.

This is the most shocking part of Emily Mildenhall's article: https://emilymendenhall.substack.com/p/bluesky-blowup?r=58lot&triedRedirect=true

This study was about the rare, 1 in 5000, monogenic form of EDS. I don't think there would be any surprise that this genetic condition which is known to affect connective tissue in other organs besides joints, might lead to OSA. There is nothing here as far as I can see that has any specific...