I don't think there is, I suspect it is a deliberate feature of the software so that you don't end up 4 pages into a thread with each post having 20 levels of quoted text in it.
Chronic Fatigue Syndrome: Right Name, Real Treatments
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I don't think there is, I suspect it is a deliberate feature of the software so that you don't end up 4 pages into a thread with each post having 20 levels of quoted text in it.
Definitely sounds interesting.
though it seems he is also taking the "threats" against researchers at face value:
Does anyone know if there is a reputable source up somewhere about how this turned out to be freedom of information requests and internet comments out of context? I know I read this but have mentally misplaced the source.
My reading of this makes me think his reference to scepticism implies scepticism towards certain studies in his own field of psychology.
The following paragraph seems to explain why his scepticism arose in the first place:
"What is accepted as necessary for drug trials is routinely ignored for trials of psychotherapy treatments and meta-analyses integrating their results...Yet, we routinely accept claims of superiority of psychological treatments made by those who profit from such advertisements. Meta-analyses allow them to make even bigger claims than single trials. And journals accept such claims and pass them on without conflict of interest statements. We seldom see any protesting letters to the editor. Must we conclude that no one is bothered enough to write?
Meta-analyses of psychological treatments with undisclosed conflicts of interest are endemic. We already know investigator allegiance is a better predictor of the outcome of the trial than whatever is being tested. But this embarrassment is explained away in terms of investigator’s enthusiasm for their treatment."
Esther12
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There's lots of stuff about them trying to argue that patients wanting to get information about PACE should be dismissed as anti-psychiatry harassment.
@maxwhd on twitter recently pointed out that the BMJ's example of a harassing e-mail to Wessely seems to have been taken from a website, not an e-mail, and that the website had clearly marked that a quote was taken from a (pacifist) Bob Dylan song in a way that the BMJ did not make clear.
The website was written by someone who used to post here and with whom I clashed quite frequently so I am certainly not standing up for him, and he does describe Wessely as a despicable piece of human shit, but to present it in the way the BMJ did makes it seem more threatening than just angry.
Thanks @Esther12
That is good to know.
I figured out what i had seen before, it was this - ironically obtained through freedom of information
"In the run-up to the full formation and launch of the Collaborative, a
meeting was recorded by the Science Media Centre (SMC)'s outgoing head of Mental Health (details below). In attendance were key persons now involved with the Collaborative. Under their heading 'Harassment' (of researchers) they list:
* Freedom of Information Requests
* Complaints to the GMC and various institutions
* Parliamentary Questions"
https://www.facebook.com/tymestrust/posts/1494167207535083
I wonder if anyone has whole document in the context of the FOI request, I could only find it on this facebook page
That is good to know.
I figured out what i had seen before, it was this - ironically obtained through freedom of information
"In the run-up to the full formation and launch of the Collaborative, a
meeting was recorded by the Science Media Centre (SMC)'s outgoing head of Mental Health (details below). In attendance were key persons now involved with the Collaborative. Under their heading 'Harassment' (of researchers) they list:
* Freedom of Information Requests
* Complaints to the GMC and various institutions
* Parliamentary Questions"
https://www.facebook.com/tymestrust/posts/1494167207535083
I wonder if anyone has whole document in the context of the FOI request, I could only find it on this facebook page
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Though we don't know the details, I wouldn't be surprised if he did get threats. Not necessarily patients or possibly from some fringe group of patients.
The only reason I mention this is because we speak of "threats" towards and I condemn them from either side.
But who the h*ll knows the true story. At this point, it's water under the bridge.
Barb
The only reason I mention this is because we speak of "threats" towards and I condemn them from either side.
But who the h*ll knows the true story. At this point, it's water under the bridge.
Barb
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biophile
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Interesting. I hope James Coyne does get involved sooner or later. It looks like his recent comment was prompted by a tweet about the Lancet rejecting the ME Association's letter for publication. Re Coyne's skepticism, I can hazard a guess that he meant the application of scientific skepticism in general, but I wouldn't be surprised if he will be critical of the MEA's emphasis on patient surveys over the results of a large RCT without explaining what is wrong with the RCT.
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Esther12
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I don't understand the MEA's recent focus on patient surveys over criticising specific aspects of PACE. Maybe Charles has indicated here that he's been told 'behind the scenes' that criticisms of PACE's methods and analysis don't persuade anyone important - but they are valid and important. Seems to me like if there has been any conscious decision to shift emphasis, it's a mistake.
They quoted an e-mail to Crawley that said 'you will pay for what you've done" (about the way she's approaching Lightning Process stuff) as an example of a death threat - people sending angry stuff wouldn't surprise me, 'death threats' are everywhere on the internet especially whrn interpreted so loosely, but any real underground network of patients planning to actually attack anyone? This seems amazingly unlikely to me, particularly given the way in which they've had to spin and hype the whole story.
They quoted an e-mail to Crawley that said 'you will pay for what you've done" (about the way she's approaching Lightning Process stuff) as an example of a death threat - people sending angry stuff wouldn't surprise me, 'death threats' are everywhere on the internet especially whrn interpreted so loosely, but any real underground network of patients planning to actually attack anyone? This seems amazingly unlikely to me, particularly given the way in which they've had to spin and hype the whole story.
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Bob
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I think they use their survey data partly because it's their own data, so it closely reflects their own members' experiences and needs. And I think they use the survey data to promote a broad message that the PACE trial outcomes don't reflect the experiences of patients (their members) in their real lives, in clinical settings. My interpretation is that they use their patient surveys to show that a one-treatment-fits-all approach isn't suitable for ME/CFS, and that patients need choice, and that NICE needs to reflect this in its recommendations. Critiquing the PACE trial has a role to play, but there has to be more to advocacy than just using the pace trial to demonstrate the weaknesses of current policy. If the PACE trial evidence isn't ultimately rejected by nice, then we need other data and other arguments if all patients are to be served by the NICE guidelines. i.e. In future guidelines, NICE might accept the PACE trial as evidence relating to a subset of patients, but also accept that the PACE therapies don't serve all patients. That's my interpretation anyway.
Esther12
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I agree that there should be room for me a to reflect members experiences, it's just that there seems to have been more of an emphasis on this over discussing specific problems with PACE and the way researchers have presented results recently.
I agree. Threats but I would highly doubt any action. Whether patients or not.
Kind of the nature of the beast.
Barb
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alex3619
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What are they going to do, fall in the general direction of their target and hope the butterfly effect gets them? We are mostly too sick to be dangerous, and too compassionate to be violent, but we can be very angry about this stuff.
Bob
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Can anyone grab a screen shot of this?:
https://twitter.com/CoyneoftheRealm/status/583987995071643648
https://twitter.com/CoyneoftheRealm/status/583987995071643648
Jonathan Edwards
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I don't really understand twitter. It seems to be a bit like playing Mornington Crescent. Still, maybe we got Mornington Crescent then?
Bob
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Well, perhaps there can be similarities at times on Twitter, but there is order within the chaos.
Twitter takes a bit of getting used to, but it's an incredibly useful communication tool. (Although, the 140 character limitation can cause misunderstandings at times.)
And, yes, it looks like we got Mornington Crescent. (I did have to google Mornington Crescent to see what you meant!)
Kati
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Twitter is a great tool for advocacy and networking. There are a growing number of physicians participating in tweetchats (google healthcare tweetchats for your schedule of available chats)
thegodofpleasure
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Prof. Coyne will be giving the latest in a round of lectures entitled "Are most positive findings in psychology false? An activist perspective" on 14th May 2015, 17:00 - 18-30, The Old Joint Stock Pub, 4 Temple Row, Birmingham, B2 5NY
If anyone is in the Birmingham area (UK), this may well be worth a look.
http://www.bps.org.uk/events/are-most-positive-findings-psychology-false-activist-perspective