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Well done Charles S and the Guardian https://www.theguardian.com/world/2020/dec/18/long-covid-guidance-urges-referral-uk-clinics-four-weeks

I don't know about conflict of interest but my understanding is that everyone involved in NICE guideline production has to sign a stringent set of rules aimed at not trying to influence the outcome. Strangely I never signed anything, but then I was just an outside witness.

It's a complete smØrgastrone. Mind you NICE methods do seem be fostering a fragmented approach- by hiring people to do Long Covid who know nothing about ME.

Very good.

I don't think you need to worry. The LC team think they can breeze in and carry on the old story. They will have no impact on the ME committee decision and for LC their plans will fall apart quickly. For one thing there will be no staff to do rehab, what with there being no staff to run ordinary...

A quick PubMed search suggests that Turner-Stokes has herself done one controlled trial- of Botox for spasticity. But she has done about twenty Cochrane systematic reviews of rehabilitative treatments, including exercise.

I think that may be an error or misinterpretation. The NICE draft guidelines may cast doubt on the sort of treatments that L T-S champions and uses. Maybe she has been involved in systematic reviews that were cited?

Perhaps Professor (9-5) of data science should be more transparent about who they are and why they should raise such an emotional response from such an ill-informed, confused and unhelpful position. The irony.

No, post 30 gives the article - in the yellow box. My name at the top is an artefact of the thread.

Its on post #30 for now.

Ben Marsh raises a good point. Isn't it political interference to issue an editorial criticising a NICE proposal during consultation? OK we have free speech and if NICE had been biased by a group with vested interests then it would be right and proper for a journal to cry foul. But that would...

I have submitted a rapid response to BMJ pretty much as shown here.

Thanks I have edited a bit.

Thanks, there is a 1 earlier and the 2s both refer to the NICE draft. I am actively editing the letter on thread so that people can see. I have removed direct reference to specific trials.

I am trying to draft something. What do people think of this: Dear Editor, I am sorry to say that I think the recent editorial [1] on the draft NICE guidelines for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is unsubstantiated, confused and unhelpful. Having been involved...

Having been through an early stage trial process myself this all seems very unsurprising. They were in the unusual situation of moving to proof of concept phase II/III within weeks of producing the first samples of vaccine. Uncertainty about exactly what dose level is best supported by your...

Isn't it extraordinarily insulting to refer to those who put together the harms observations as a few 'service users' - like the pesky people who leave garbage on public transport. Matronising at its most egregious.

I think it may well be the preprint you mention. Eccles is someone with a psychology training who, like Hans Knoop, has jumped on the hypermobility bandwagon. From what I have read of her stuff she has no idea of how science works. I suspect Bragee has overegged what her study tells us - which...

It is bizarre - NICE was misled by qualitative accounts from patients. So what we need is fewer controlled trials and lots more qualitative accounts of patients getting better because you need individualised qualitative accounts for complicated illnesses (but maybe not by patients).

I am quite shocked that this is an editorial. Normally a politically fired piece like this would be Point of View or a letter. Editorials can deal with quirky ideas but if they put forward a political view on policy they have to be assumed to represent the view of the editor. Does the editor...