Search results

Thanks for your excellent posts, Hutan. In expressing your views so clearly you’ve saved me a lot of energy. I’m a bit puzzled by this. Why does it matter to engender confidence in members of the Cochrane community? Perhaps I am misunderstanding what you’re saying but are we not in agreement...

Yes, and wasn’t one of the reason’s given for why it couldn’t be retrieved because Peter White (who is currently publishing papers on CFS) had retired?

You referred to the “demonization of an entire community because of the behavior of a few” and “the stigma that flows from all being judged by the behavior of a minority”. I think it is reasonable to infer from those comments that you were implying that some people have behaved inappropriately...

Hilda, you have now been asked a version of this question at least 3 times and haven’t answered. Please can you tell us who these people are and what they have done? If you are not willing or are unable to tell us, please can you explain why? I don’t speak for the forum but I’m fairly sure that...

Indeed. We don’t want a repeat of what happened with PACE, where AfME’s ill-informed involvement was exploited by the trial authors and their supporters to make it look as though it had the support of “non-activist” ME patients.

I very much hope that @Hilda Bastian will answer this question. I would recommend reading this blog on "The Death Threat Myth Exposed" by Jennie Spotila...

I think it’s clear that most of those with vested interests in promoting CBT/GET as safe and effective treatments are unlikely to agree with criticisms of PACE methodology etc. The best we can hope for is agreement between independent scientists who understand trial methodology (like Jonathan)...

Except, as you noted in your evidence to the Scottish Parliament: “these trials generally tell us nothing useful. However, the PACE trial at least may tell us more – that the theory behind the treatment is actually wrong.” If Cochrane were to come to the same conclusion, that would be useful...

”looking forward” a bit like the way I used to look forward to Dr Who – with my eyes shut, hiding behind my Dad’s armchair.

Today I received the following reply from the BBC in response to my escalation of my complaint about Gerada’s comments on BBC Breakfast: I was particularly disappointed that the BBC seem to think that Gerada and Garner are different to people with other chronic illnesses because they were both...

That’s good to hear, although I am mindful that you told us in March that “it shouldn’t take anything like that long” when asked if it would be published by 21 April:

Good idea. Will you write to them Caroline? Might be worth cc-ing Carol Monaghan and your MP too.

I hope I’m wrong but my prediction is that the long awaited progress report won’t be published before NICE releases the embargoed Guideline to registered stakeholders, let alone before the end of the month.

I blame @Graham! Sincere thanks to you and everyone else here who donated. We smashed the £10,000 target this evening.

Love that: Born to rock boats!

In April 2020 we were told that the first progress report would be published “soon”. A year later we were told that it would be published “soon”. I would therefore guess that it will start soon. I don’t understand why we haven’t had progress reports every month since the process started at the...

I managed to edit my comment which has now been published below the preprint: https://www.medrxiv.org/content/10.1101/2021.04.20.21255804v1 I’m minded to submit something similar to the journal when the final paper is published, assuming it’s much the same. If someone could tag me when it’s...

I've submitted the following comment in haste (awaiting approval): Clery and colleagues state that “evidenced based treatments are available” for chronic fatigue syndrome. These are listed as Cognitive Behavioural Therapy-for-fatigue (CBT-f), Activity Management (AM) and Graded Exercise...

Nice that they sent you kisses!

I notice Hilda refers to “we”. I don’t know if that means she’s recruited anyone to the IAG yet or if she’s just referring to herself and other Cochrane people. No doubt we will find out in the fullness of time. Edit: sorry crossed with Andy. Leaving it here for comment above.