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Can anyone find the full study protocol - I'm interested in the outcome indicators; noticed a mention of the dreaded "SF-36-PFS questionnaire"...

Might need some help with this @Sly Saint ! E.g. was there a decision to provide additional funding and if so the was it after the draft NICE Guidelines were published (November 2020)? EDIT - Noticed this "The study is funded by the NIHR HTA. Recruitment was complete in November 2020...

Hi guys now that the long awaited revision of the NICE guidance on ME/CFS is nearing completion (18th August) I thought I'd create a thread to identify studies which have been funded by the Government in the UK. Specifically do they address the draft NICE evidence review findings i.e. that the...

Hi MSEsperanza I haven't looked at your query but if you don't get an answer via Science 4 ME then I/Michiel can post here - #MEAction European Union (EU) - there are a lot of members from Germany. @Michiel Tack

I agree and as you had identified I'm accusing the Government of gaming the system - they are providing treatments which are ineffective but "evaluating" these treatments in a way which makes them look effective - window dressing.

Jaime Seltzer [ME Action], from memory, told me that she had some sympathy with critics who highlighted that activity levels might explain differences in healthy controls and people with ME/CFS (with disabling fatigue). So I wouldn't be surprised if Growth Hormone levels were lower in people...

I think I recall that one of the Thought Cages programs on Radio 4 looked at ways to improve patients satisfaction. It identified some simple/cheap ways of improving patient satisfaction and posed the question what's wrong with doing these things to boost your performance figures? There seems...

This gave me a laugh "Surgical scars and the expansion of narrative possibilities. By Camille Kroll." Reminds me of Zen and the Art of Motorcycle Maintenance - but without the enjoyment/insight. I didn't stick with this article beyond the first paragraph - there may be some hidden gems in there.

I recall that you highlighted that it was difficult to see a way into ME/CFS e.g. for a young Doctor willing to work in it. For the physiotherapists, and psychologists, there's an unmet demand i.e. from other patients - waiting lists are very long. Hopefully studies like GWAS @Simon M will help...

If you listen to the end of the video (it's rather painful and seems long --- 2 minutes or whatever) then the next screen which appears is a collage of the usual internet suspects --- strangely appropriate --- i.e. this physio video would fit into that slightly weird collage. If the NICE...

I've only glanced at this and I'm not confident that I understand it but basically they took some blood samples and poured them onto slices of baboon pituitary gland? As per @Ravn perhaps there are opportunities to limit the impact on baboons e.g. there's thread here on producing human proteins...

I'm just wondering if this would be indicated/supported by the proposed GWAS study - OK that's now a standard reply from me! @Simon M I have a family member who has a thyroid problem (hypothyroidism I think) and another with disabling fatigue of unknown cause, so yes thyroid issues are...

Thanks @Sly Saint, I assumed it wouldn't be published! I'd been regretting not including a comment based on insight from @Jonathan Edwards i.e. that Doctors value being able to refer people with ME/CFS somewhere. So, as well as the dodgy researchers getting public funding for low/very low...

thanks Caroline - Just skimmed the Times article and it reads fairly well --- nothing immediately jumped out at me.

I think they also used actimetry/actigraphy i.e. objective outcome indicators - "2. Physical activity (Sensewear armband) [ Time Frame: Analyzed at baseline and at interval 17-21 months ] The patients' physical activity level, in a home setting for 7 consecutive days, is recorded using...

I agree that the Phase iii rituximab study was blinded - I thought they also used actimetry (need to see if I can find the study protocol). EDIT - @MSEsperanza this seems to be it: "2. Physical activity (Sensewear armband) [ Time Frame: Analyzed at baseline and at interval 17-21 months ] The...

Thanks @Trish @Caroline Struthers just submitted this* and got the auto-acknowledgement email. *"Dear Editor NICE published its draft updated guideline on ME/CFS on 10 Nov 2020. There are comments in this article re the quality of the evidence. If anyone is concerned re NICE's evidence review...

How do you submit a rapid response - I'm thinking of replying. Thanks @Trish

"raise questions about how the evidence could have shifted so substantially" Well maybe a redraft "raises significant questions about the quality of the review which led to the 2007 Guidelines" I.e. how come the "experts" who conducted the review which led to the 2007 Guidelines didn't spot...

emailed* this long covid group re this article & thread: "You may already be aware of this: https://blog.petrieflom.law.harvard.edu/2021/07/29/long-covid-chronic-illness/ Also, check out some comments re the article here -...