'Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much' PLOS Blog post by Hilda Bastian

Cheshire said:
Colquhoun runs the website DC's Improbable Science, which is critical of pseudoscience, particularly alternative medicine, and managerialism"
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My impression is that Colquhoun is not our friend.
When I tried to get his attention in the past about trialling video games for ME he replied along the lines of why not, nobody knows what ME is so may as well try anything.

He has repeatedly declined to enter the debate about poor science in the field of ME and the impression he likes to give is that we are all an angry bunch.
 
BurnA said:
My impression is that Colquhoun is not our friend.
When I tried to get his attention in the past about trialling video games for ME he replied along the lines of why not, nobody knows what ME is so may as well try anything.

He has repeatedly declined to enter the debate about poor science in the field of ME and the impression he likes to give is that we are all an angry bunch.
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Yes, I agree, but there seems to be a change. "Brilliant account" to qualify a paper that clearly takes sides against the BPS contrivances, is strong (even though the rest of his statement is, a you say, very vague.)
I may be too optimistic, but maybe he's starting to see things in a different light...
 
rvallee said:
It's a common thing. My health care system does the same. We're users or clients. I think it's in part because not everyone who interacts with health care is a patient in the sense of being sick and in need of care. Healthy people are expected to have regular (or occasional, jury's still out on what is appropriate) and aren't technically patients for those interactions yet they still use the services.
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I think I prefer "user" from "consumer". Particularly after the Research Council of Norway's pilot project on user identified needs in ME research. Clinicians were included too in the term together with patients, as they as well are users of the research. I liked that definition.

Excellent blog post though!
 
If 'consumer' is the term used within Cochrane, then I'm glad she stuck with it - because this in many ways are mostly aimed at people within Cochrane, isn't it? They will likely all read it? The old review group, the new review group, Larun et al, Tovey - and clearly some of the mentioned researchers ;)

 
BurnA said:
My impression is that Colquhoun is not our friend.
When I tried to get his attention in the past about trialling video games for ME he replied along the lines of why not, nobody knows what ME is so may as well try anything.

He has repeatedly declined to enter the debate about poor science in the field of ME and the impression he likes to give is that we are all an angry bunch.
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Colquhoun blocked me ages ago on Twitter along with others simply for being critical of bps crowd. He is not our friend.
 
inox said:
If 'consumer' is the term used within Cochrane, then I'm glad she stuck with it - because this in many ways are mostly aimed at people within Cochrane, isn't it? They will likely all read it? The old review group, the new review group, Larun et al, Tovey - and clearly some of the mentioned researchers ;)

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Ah, of course, the obligatory "have you read the paper?" from Sharpe. Nevermind that the article gives quite extensive explanations of how Bastian was exposed to the work over the years. Dare I say the professor has not actually read the paper?

Nice victim complex, though. After years of controlling the conversation and benefiting from PR blitzes with direct access to the news media, we have heard quite plenty about what they have to say, in fact we have mostly heard that uncritically.
 
Based on his previous responses, I wonder if @profmsharpe has spoken to any non-PACE researchers and actually listened to what they had to say? It might be helpful.

In any case, known bad and wrong methodology speaks for itself. There is not much to say, argue, nor defend about it. What is there to defend about outcome switching, etc.? How much should one devote to listening to 1+1=3?

Was he also the one who cited 20 years of experience in clinical trials as something worthy? This cartoon from the article is for him:

Experienced.jpg
 
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rvallee said:
Ah, of course, the obligatory "have you read the paper?" from Sharpe.
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Actually no, it's the next response in the series.

Response 1 - "Have you read the paper?"

If they obviously have and you don't feel you can chance your arm with response one, then:

Response 2 - "Have you spoken to any of the PACE researchers?"

If they obviously have and you don't feel you can chance your arm with response one or response two, then:

Response 3 - etc etc

Michael Sharpe would be better suited to a job in a call centre, given his skill in delivering responses from a flow chart under his nose.
 
TiredSam said:
Actually no, it's the next response in the series.

Response 1 - "Have you read the paper?"

If they obviously have and you don't feel you can chance your arm with response one, then:

Response 2 - "Have you spoken to any of the PACE researchers?"

If they obviously have and you don't feel you can chance your arm with response one or response two, then:

Response 3 - etc etc

Michael Sharpe would be better suited to a job in a call centre, given his skill in delivering responses from a flow chart under his nose.
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He would be perfect as the, press 1 for.... press two for.... 3 for...... robot that just keeps sending you round and round and then hangs up on you after saying, "I didn't get that press hash to hear your options again".
 
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inox said:
Had forgotten about this - when Coyne posted this blogpost about PACE on his then PLOS-blog in 2015, his blog got shut down after complaints.

Will be very interesting to see what happens to Bastins blog - or are the times truly changing...?


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I don't believe they will have a problem with Basian's blog.

It wasn't just what Coyne was blogging about, there were a few incidents where his behaviour was problematic...
 
Snow Leopard said:
I don't believe they will have a problem with Basian's blog.

It wasn't just what Coyne was blogging about, there were a few incidents where his behaviour was problematic...
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I'm aware, there probably was several factors when the blog was ended in 2017, but the incident in 2015 when he suddenly over night lost access to the blog seemes to be directly linked to complainets from either/or Lancet editor/PACE-authors.

PLOS Blogs only days before had shut down the blog site because of complaints from someone associated with the PACE trial.
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I pressed Victoria Costello for details. She said an editor had complained. When I asked if it was Richard Horton, she paused and mumbled something that I took as an affirmative.
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inox said:
If 'consumer' is the term used within Cochrane, then I'm glad she stuck with it - because this in many ways are mostly aimed at people within Cochrane, isn't it? They will likely all read it? The old review group, the new review group, Larun et al, Tovey - and clearly some of the mentioned researchers ;)

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This clearly isn't her first circus... ;)


 
I hope that somewhere there is a nosologist looking for any increase in the length of a certain nose.

If one, for instance, looks at Sharp's chapter on chronic fatigue in Science and Practice of Cognitive Behaviour Therapy one sees various models in diagrammatic form. There is "A generic cognitive behavioural conceptualisation of chronic fatigue syndrome". There is "A simple specific model of cognitive behavioural chronic fatigue syndrome". There is "A complex specific model of chronic fatigue syndrome".

I am sure that reading the text will make it clear.
 
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