Discussion in 'Latest ME/CFS Research' started by Dolphin, May 12, 2010.
Kind of amusing that NICE don't think PACE showed anything worthwhile.
Since the 2007 NICE guidelines for CFS were published, evidence had come to light that CBT and GET do not increase employment hours and do not increase total activity levels, contrary to common allusions.
These findings come at no surprise to patients and carers who live in the real world, but such facts should be part of any guideline which purports to outline how patients should be managed with CBT/GET.
I think PACE used the London criteria, but to be honest, it is so irrelevant I haven't bothered comparing it with the others, otherwise we will all be debating how many psychiatrists in the Wessley camp can dance on the head of a pin.
I prefer the question of how many pins one can stick in the head of a psychoquack!
Well, I'd put more faith in voodoo that psychology for sorting out my ME. At least as a zombie I'd get about more.
It has been mentioned a few times on this forum that James Coyne is a renegade psychologist who critiques the flaws in CBT and other psychological research. He has recently been ripping into the CBT trial for schizophrenia, which was published in the Lancet and hyped uncritically, reminiscent of the PACE results being published there 3 years ago.
Coyne is at least cursorily aware that potential issues exist with the PACE Trial.
But if anyone has wondered why Coyne has not been all over the PACE Trial like a seagull at a picnic (or garbage dump), besides the usual such as being too busy or simply just not being interested, here is another possible reason:
"I know Simon Wessely and know that he has had death threats over his interpretation of a trial of CBT chronic fatigue."
Fascinating. Someone gets a death threat, and suddenly their bullshit theories cannot be politely and scientifically disputed. I guess that explains his I'm-the-victim media campaign regarding such threats.
That's a good find. The other sentence regarding Wessely seems to indicate that he doesn't understand the issues.
"I know Simon Wessely and know that he has had death threats over his interpretation of a trial of CBT chronic fatigue. I do not think he wants to step back into the fray late judgments about a trial of CBT for unmedicated schizophrenics."
Gish Gallop is a good term that he uses.
There is no evidence that even one person with myalgic encephalomyelitis has ever threatened a researcher. It is deliberately harmful propaganda being used to denigrate us. The only person ever convicted did not have M.E. or even chronic fatigue.
I am not sure who you are referring to, Coyne or Wessely? Just to be clear: Wessely is mentioned because, during a debate between Coyne and the "hacker" of his blog, the "hacker" apparently suggested using Wessely as a referee:
[edit: the debate involves a trial of CBT for schizophrenia]
On the issue of abuse ...
Considering how common internet abuse is these days even for unimportant issues, I tend to think that a degree of abuse towards a few CFS researchers has plausibly occurred over heated issues. However, you are correct that it has been used successfully to tarnish the general impression of their critics, but no solid evidence has been produced, just unverifiable references to the police or authorities, despite the lack of arrests for such supposedly-common criminal offenses.
The Nigel Hawkes BMJ article, IIRC commissioned by the Science Media Center for what they later described as part of their organized campaign against abusers, does mention some disturbing examples though.
I also vaguely remember one researcher coming to PR to describe some abuse they allegedly received. However, after interpreting the slightest criticism or failure to respect their supposed scientific authority as "harassment", it unfortunately made me question the severity and nature of the other alleged abuses.
I thought it would be the first sentence rather than the second sentence which indicates Coyne doesn't understand the issues surrounding PACE and ME/CFS, because he seemingly refers to it as a CBT trial for "chronic fatigue". Although on the other hand, PACE only required the Oxford criteria, which all other CFS definitions regard as idiopathic chronic fatigue.
The second sentence makes sense from the point of view of bringing in Wessely to referee an argument about "a trial of CBT for unmedicated schizophrenics", since that is what Coyne's blogpost was all about.
I can't get my head around this idea that abuse and threats over the internet has put professionals off. What about all those professionals who face real physical threats regularly, such as medical staff at A&E, social workers, teachers, …? Is it just that they see it as a vocation, whereas these folk just aren't that committed to their cause? Or is it simply that a larger salary reduces a person's dedication?
Option 3: They're just looking for yet another excuse to vilify anyone who disagrees with them. Despite Wessely's histronics, I don't think we've lost any useful researchers or clinicians due to purported abuse. Even Wessely keeps coming back
Is that the solution then to getting better researchers?
Precisely. If real death threats had been made, they would have been reported to the police and action would have been taken. Alleging "death threats" is a tactic used by vested interests to shut down debate (it has been used in Australia in recent years on other issues).
I haven't followed it closely but there has been a bit of a furore among some with how a trial of Cognitive therapy for another condition, Schizophrenia, has been reported in the Lancet. This article links to a lot of the information:
From Lancet PACE:
I was just about to look into reference 31, when I found that Dolphin already had (back on page 32!).
I thought I'd repost, as I think that this was one of the two papers that they cited to justify changing their primary outcomes from those laid out in the trial's protocol:
The text is no longer available at that link.
The other paper that they cited to justify their changes in primary outcome measures:
This paper got a few bits of correspondence, and I meant to look into it more in 2011, but I don't think we ever got copies of them.
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