One part of this article really jumped out at me due to its parallels with the PACE trial controversy. I have always been baffled by the complete lack of interest in the PACE scandal by the media, academia and the general public.

Apparently most journalists (the article refers to them as being 'scientifically illiterate'), journal publishers and the medical establishment did nothing to investigate and call out Wakefield's fraud either.

Andrew Wakefield’s pseudoscience can help us understand our modern post-truth crisis

The Sunday Times journalist Brian Deer did not come early to the disastrous MMR party. By the time in late 2003 that he and his commissioning editor decided that those at the heart of the “controversy” over the effects of the combined vaccination needed investigation, the business had been rumbling on for half a decade.

Seven months later the British Medical Journal (or BMJ) carried a 19-page, 24,000-word article on the Wakefield affair written by Deer. It had taken half a year to write and to check.

Towards the end of the process, Deer recalls, the journal’s editor said to him of the piece: “It’s fraud, you need to say that clearly.” To which Deer (who had already done this in The Sunday Times) replied: “Well, if you think that, it’s you who should say it.”

This moment encapsulated a feeling of anger that had been rising in me as the story unfolded. I knew that the journalistic trade had, with some big exceptions, done its readers little service during the MMR scare. I also realised that the judiciary, relying on solid evidence, had behaved significantly better, here and in the US.

Yet what should amaze the reader of Deer’s book is the weakness, venality, vanity and slowness to action of the medical establishment and its publications and institutions in the face of a rogue doctor. Most of the things that Deer did should have been done by the profession. Had he not so assiduously turned over every one of Wakefield’s stones, the man would probably still be licensed to practise here.
 
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One part of this article really jumped out at me due to its parallels with the PACE trial controversy. I have always been baffled by the complete lack of interest in the PACE scandal by the media, academia and the general public.

Apparently most journalists (the article refers to them as being 'scientifically illiterate'), journal publishers and the medical establishment did nothing to investigate and call out Wakefield's fraud either.

Yet what should amaze the reader of Deer’s book is the weakness, venality, vanity and slowness to action of the medical establishment and its publications and institutions in the face of a rogue doctor. Most of the things that Deer did should have been done by the profession.

This so much.

I've been reflecting a lot on this recently in relation to ME. The structural spinal issues (and this is not a thread for discussing those) just highlight for me yet again where accountability lies for the hole ME patients are in. I don't blame the mainstream press particularly; they just reflect what the medical establishment and journals have done through their negligence and collusion, and are still doing by failing to do their job. It's been a real eyeopener for me and a source of much disillusionment.

edit removed one word to make sense
 
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Just listening to the last episode of the podcast This Week in Virology where they're discussing how to run proper vaccine trials.
At 98.38 min:

- 30 000 people is not a trivial number to recruit. If that's what you think. To have a properly powered trial, then that's the number you have to look at. Not a thousand. Not 1 500. Ok, that's the point.
- You can't move the goal posts as you go.
- Just like with ME/CFS. You can't change your criteria midway through.
- Exactly, right.

and then they're all giggling, because just the idea is so ridiculous.

https://www.microbe.tv/twiv/twiv-660/
 
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Just listening to the last episode of the podcast This Week in Virology where they're discussing how to run proper vaccine trials.
At 98.38 min:

- 30 000 people is not a trivial number to recruit. If that's what you think, to have a properly powered trial, then that's the number you have to look at. Not a thousand. Not 1 500. Ok, that's the point.
- You can't move the goal posts as you go
- Just like with ME/CFS. You can't change your criteria midway through
- Exactly, right.

and then they're all giggling, because just the idea is so ridiculous

https://www.microbe.tv/twiv/twiv-660/
Link to copy and paste if anybody wants to go straight to that part.
Code:
https://youtu.be/wvEU4XT323c?t=5886
 
Just listening to the last episode of the podcast This Week in Virology where they're discussing how to run proper vaccine trials.
At 98.38 min:

- 30 000 people is not a trivial number to recruit. If that's what you think. To have a properly powered trial, then that's the number you have to look at. Not a thousand. Not 1 500. Ok, that's the point.
- You can't move the goal posts as you go.
- Just like with ME/CFS. You can't change your criteria midway through.
- Exactly, right.

and then they're all giggling, because just the idea is so ridiculous.

https://www.microbe.tv/twiv/twiv-660/

It would be good to see Virology do an episode on long covid and an overview and catch up with David Tuller for new listeners.
 


Do notice the bio. I generally agree that exercise is incredibly good for health (and fun) but this cult of 'exercise is a panacea' is way overdue for some reality adjustment. Good to see some people in the field are coming around to it.
 


Do notice the bio. I generally agree that exercise is incredibly good for health (and fun) but this cult of 'exercise is a panacea' is way overdue for some reality adjustment. Good to see some people in the field are coming around to it.


Is anyone coming round to it. Isn't his 'Pacing' just doing the exercise more gently when there should be no mention of exercise at all until there is some evidence.
 
Is anyone coming round to it. Isn't his 'Pacing' just doing the exercise more gently when there should be no mention of exercise at all until there is some evidence.
Possibly. But supporting moving away from GET and saying pacing is likely better is something I would not have expected a few months ago. Then again, question is whether he would support saying so to the NICE committee and on the Cochrane review process.

It's really problematic that pacing apparently means something else in other contexts. I've seen that a few times, equating pacing with gentle GET. I really would like for words to reliably mean things. It sure would be great.
 
Is anyone coming round to it. Isn't his 'Pacing' just doing the exercise more gently when there should be no mention of exercise at all until there is some evidence.
I can only speak for my wife, who is mild/moderate. She does exercise in that she is able to get on and do quite a lot of things, but what she does and when she does it is not driven by any time-based, activity targets, regime, that takes little heed of capabilities. Instead her exercise/activity is naturally guided by what she is capable of. Essentially she works to/within her energy envelope, which is a dynamic thing in itself, but that is the last way that she would model it I think; in fact she does not do it that consciously at all. She just does what she can, and has good instincts about how far to go and when to stop.

One strategy pays little heed to real time capabilities and is driven by open loop goals relating to time and activity, regardless of capabilities. The other strategy turns that on its head and is governed by closed loop management of activity according to real time capabilities.
 
Possibly. But supporting moving away from GET and saying pacing is likely better is something I would not have expected a few months ago. Then again, question is whether he would support saying so to the NICE committee and on the Cochrane review process.

I agree that there has been progress in that people like this have to change what they say. Whether they change what they think or do is another matter.

At least they are on the back foot, even if they like to pretend they are dancing out front.
 
It seems times might be changing, oddly enough!


I don't see much change in the mindset. Firstly there is still an assumption that somehow this guy is still the expert - having 'learned it's about storing energy' somehow. What energy is he talking about? Certainly not ATP. Secondly, the rest today is so that you can do MORE TOMORROW. Why doesn't he just admit that it might be better for people to listen to their bodies and take things as they come. I guess that wouldn't be good for business though.

Yes, the message seems to be getting coverage but no I don't think anything is sinking in.
 
I have experienced 5 major #longcovid relapses in 3 mo. This video explains why: HR>110, into anaerobic threshold. Why isn't this information more widely disseminated? WE NEED GUIDANCE NOW. Stop pussy-footing. Draw on ME/CFS research and experience.

Garner says he is a founding member of Cochrane. He runs the Centre for Evidence Synthesis for Global Health

He should know why this information has not been widely disseminated - because of the Cochrane system and its GRADE and ROB tools allowing poor quality evidence to be accepted. And he is still saying 'I do not blame Cochrane'.

And yet the irony is, as alktipping points out, the evidence on heart rate monitoring tells us nothing conclusive yet either. If it is all about anaerobic threshold then why do people get PEM from mental exertion?

This is why I say that the sort of discussion that we have on S4ME is actually way above what goes on much of the time within academic medical circles themselves. Genuine open critique is rare and constructive debate almost unheard of.
 
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