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So we need someone to investigate how effective the Epworth scale is in identifying sleep apnoea in people with ME.

Ugh on the one hand on the other hand. (And ugh linking to a book by Shorter) Seems like he’s so reluctant to get off that fence, no doubt he’s got plenty of splinters in uncomfortable locations.

Yes there were definitely some in the workshops. Both groups I was in had a carer.

I support carers used to have caring role for a parent. Is there any evidence to back up the statement about carers above obviously children have parents or carers but in respect of adult people with ME do the vast majority have family who actively fulfil a significant caring role? also there...

https://www.nejm.org/doi/full/10.1056/NEJMoa2206038 interesting development that I’ve only just picked up on these new drugs are apparently effective at suppressing appetite and this latest claims to have resulted in around 20% weight loss.

https://www.nice.org.uk/news/article/nice-recommends-new-drug-for-people-living-with-obesity From 8 February 2022 Thousands of people living with obesity are set to benefit from a drug that has seen reduced body weight of 10% in people taking it.

Would also like to see letter from Forward ME addressed to all the science names who gave glowing quotes

It would be great if someone gets in touch with both Monbiot and Godwin to alert them to the ‘nazi’ chapter and the blogs.

Let’s hope he doesn’t get approached by researchers who want to promote the alleged benefits of eating kale, or getting some fresh air or other such ‘helpful’ suggestions :whistle:

Brilliant @adambeyoncelowe :trophy@

@Joan Crawford @dave30th flagging in case you’ve not seen that Chalder will be speaking about the CODES trial discussion of the trial on this thread...

“Acceptance and commitment therapy for muscle disease”. Which clowns are funding Chalder to gaslight people with muscle disease. Utterly disgusting.

Ah ok so the keratin business doesn’t seem to be being linked to ME as I initially read it

I decided not to read this. Whatever Fink claims to know about CFS seems to be myth. So at least one word is appropriate

Probably best to contact them to ask. @Russell Fleming doesnt get chance to come on the forum but might see this.

There’s a discussion thread about sleep here https://www.s4me.info/threads/sleep-problems-in-me-cfs-discussion-thread.23020/

Pace yourself is not pacing up tortoise v hare simple

Welcome to the forum @Tom123

I think this could make all the difference to getting research of the quality needed. I took part in the final PSP workshops and they had plenty of patient applicants for those so I don’t think there would be difficulties getting people willing to take part in patient involvement. I like the...

So is this evidence of evolution of Chew Graham approach or trying to preserve as much MUS thinking as can be got away with?