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So they are saying the whole central sensitisation idea started as a metaphor, and, repeated often with confidence, became accepted as fact. The accompanying idea that psychosocial factors contribute to it is also made up and untested. I wonder if this is an accurate article. I suspect it is...

That's very clever and apt, Robert, and especially good that it's said by a man, so can't be dismissed as carping women.

It wasn't in dark mode when I did it, which was good in my case as I can't cope with dark mode.

Sigh. Clueless.

I have just bashed my way through the whole survey, in 2 goes. By the end I gave up on the written answers. It's a ridiculous survey with multiple variations on each question so I was repeating myself in some answers, and some questions are so open ended one could write a paper and others I...

Next step. Train AI to carry out the same empathic rejection of all these symptoms as indicating any pathology, and to ask these highly inappropriate questions. Put it on an app and sell it to the NHS for millions. NHS crisis solved. Build more golf courses for all the unemployed clinicians and...

I'll have a go at completing it later. Just noting for now that they are also running a Zoom session for their members with severe ME. Good luck with that... I for one, even if I were a member, would not be able to participate in a Zoom session, and I'm at the moderate end of severe. I wonder...

I don't trust anything chatgpt says without checking their source. Does it provide links to sources?

I shouldn't be shocked at the depth of awfulness this reveals, but I am. Again. And again...:banghead:

Will do. If it doesn't appear tomorrow, remind me. I have just filled in the feedback form on the app. Basically I've said it's useless, clunky, too many outdated, contradictory, inaccurate, and overlapping resources copied from various sources, And I told them off for the pacing up advice...

I just took another item from the app at random. It's in the section Condition Overview, What is ME/CFS? A not particularly good summary of some aspects of ME/CFS which is a copy of this article by ME Research UK What is ME? At the end of the article the acknowlegement is the ME...

Is this sort of study useful? I'm struggling to see the point. If you strip out the theorising, the abstract seems to be just stating the obvious - that chronic illness striking at the stage when people might expect to transition from dependent child to independent adult is bloody difficult and...

I'm losing the will to live on this app. There is so much there, bits of it OK, bits dreadful, some documents contradicting other documents. How is a new patient supposed to navigate their way through the blizzard? I'll have one more go later today then try to summarise my key concerns from...

Continuing this section. I'm not attempting to make notes on all of it. Sections covered on a previous post are crossed through. I have bolded the sections I aim to cover today: Symptom specific resources Topics covered: Anxiety Breathlessness and cough Cognition Communication Emotional...

Stated ethos, rules and moderators are absolutely key, I think, to how a forum operates and evolves. It has been a fascinating and at times very time consuming and occasionally stressful experience being a mod on this forum. I think our success so far has been to a very great extent due to...

I tried the UK Action for ME forum briefly a few years ago. It seemed to be moderated by one individual who only allowed a single thread for sharing research news. The thread was pretty inactve. There seemed to be only about a dozen active members who chatted about their lives and experiments...

My point was that at the time they had their surgery, neither had JHS, hEDS or EDS or met the criteria such as Beignton.

She says not in this article.

But as far as we know there is no connective tissue disorder link with ME/CFS, and neither of the two biggest promoters of the idea who have had surgery, Jen Brea and Jeff Wood say they had any sign of a connective tissue disorder.

Time spent upright is already used by some clinics, I think originating at the Bateman Horne Center in the USA, but I think they just base it on pwME's noting it. I'm sure we've seen research with wearable devices that measure vertical/horizontal leg or body position.