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The PACE trial also called all the active arms versions of pacing. GET was also called Simple incremental pacing and CBT was called Complex incremental pacing. Edited to correct the above See the Manual for therapists for CBT, pages 12, 13 What I don't understand with this trial design is...

This cost over a million pounds, and they recruited less than half their target number of participants. The Activity Management is GET.

Some links to previous threads: Jul 2019 Protocol | Thread Cost-Effectiveness of Online CBT for Children with CFS/ME Compared to Online Activity Management: FITNET-NHS Trial Findings, 2023, Crawley Poster presentation | Thread

Moderator note Please be mindful of these rules, and avoid personal insults and speculation about any identifiable individual's health.

I glanced through to try to find out how participants were selected. It seems they contacted some of their existing hEDS patients to invite them and the patients selected their relatives to be controls?? Surely that brings in huge biases. The hEDS patients would only have been attending the...

Couldn't you test it by covering each eye in turn and testing different light levels?

I think my light sensitivity may be one sided when I have a migraine. Worse on the head pain side, but there on both sides.

I hope the trying out medications means proper clinical trials, not just random prescribing.

I also have a question. I admit I haven't been able to keep up with the research, so it may have been answered. I gather Pretorius was studying microclots in other diseases before Covid came along, is that correct? If so, what were the clinical and biomedical findings in these other diseases...

I can't remember. I just remember being caught by surprise by how bad it felt the next day.

I tried the handgrip test multiple times one day a few years ago. The next day my arm muscles were much more painful than usual, but I wasn't crashed.

We haven't a clue what's wrong with you but we confidently state that the cause is a mix of biological, social and psychological factors and we know how to treat you. Bah humbug, that's not science.

The abstract is an excellent distillation of your key points. I'm a bit puzzled by the bit underlined: a symptom-based syndrome characterized by post-exertional malaise, orthostatic intolerance, and an unpredictable, fluctuating time course a fluctuating time course of what?

Since I can't read the article, I don't know whether it's about encouraging parents to listen carefully their kids, ensure the kids know they are believed and to be supportive and adapt lifestyles to enable the child to cope. Or is it about telling parents to deny or ignore the symptoms, and...

That's a useless abstract. It says nothing about what the intervention actually is, nor about what changed.

Some posts have been copied to The UK Covid Inquiry

I listened to the Radio 4 health program from this week. They advised against experimenting with mouth taping on grounds of problems with choking on saliva or vomit.

Sadly it seems anyone is an expert to the BBC if they call themselves an expert and make a lot of noise about it. On the surface his credentials can seem impressive: His name is attached to various articles about ME/CFS and Long Covid published in research journals; he's part of the self...

There is a copy of the letter on the #ThereForME website: https://www.thereforme.uk/p/thereforme-letter-to-the-health-and

So do I. As far as I know we haven't seen any evidence beyond a few anecdotes, some positive, some negative. Hardly the basis for BHC to be raising spinal surgery as having any relevance to ME/CFS. I had a pretty good impression of BHC until this.