Coyne - What it takes for Queen Mary to declare a request for scientific data “vexatious”

[Cheshire]

It will be very interesting to see what the 'neutral scientists' find if they ever get the opportunity to study the data. Also some irony in that those who are critical of PACE may be able to contradict the analysis of the trial authors - appears to be saying that the trial authors analysis is automatically 'good' and any critics automatically 'bad'.

Given that Simon Wessely tweeted R Smith's blogpost, I'm wondering if they are trying to put up a new tactic. They are realising they can't prevent the releasing of the data, so they are beginning to bombard this new message: any contradictory reanalysis will be the result of unreliable twisting of the data by ME patients' allies.

 

[Kyla]

What do we have to do to be heard on the point that we don't give a toss about mental health stigma? (NOT make phone calls to researchers' spouses... that sounds super creepy. )

Would a campaign where we support people with mental illness and speak out against stigma against mental illness do any good? Maybe? Sigh. Of course mental illness is real. I don't care if I have one or not.

I've thought it would be a good idea to get people who have both a diagnosed mental illness (depression, PTSD etc) as well as ME or CFS to speak out. ie - that they are not ashamed of their mental illness, or averse to treatment for it but that it is different from ME and that those therapies don't change their ME symptoms.
I have certainly seen some stories like that on this forum, but not sure if anyone is comfortable speaking publicly about this.

 

[worldbackwards]

any contradictory reanalysis will be the result of unreliable twisting of the data by ME patients' allies.

There's an obvious solution to that and one that's been suggested: make sure that the data is analysed by a neutral party. Unlike them, we have nothing to conceal.

 

[elliepeabody]

Given that Simon Wessely tweeted R Smith's blogpost, I'm wondering if they are trying to put up a new tactic. They are realising they can't prevent the releasing of the data, so they are beginning to bombard this new message: any contradictory reanalysis will be the result of unreliable twisting of the data by ME patients' allies.

Oh what a tangled web we weave..... I was wondering what was in it for Smith writing this blog post.

 

[Esther12]

There's an obvious solution to that and one that's been suggested: make sure that the data is analysed by a neutral party. Unlike them, we have nothing to conceal.

Make it open so different parties can debate and challenge one another's analysis and interpretation.

 

[Large Donner]

Richard Smith also said this


It will be very interesting to see what the 'neutral scientists' find if they ever get the opportunity to study the data. Also some irony in that those who are critical of PACE may be able to contradict the analysis of the trial authors - appears to be saying that the trial authors analysis is automatically 'good' and any critics automatically 'bad'.

Yep.

On top of that what amount of scrutiny on data is required before one understands how corrupt it is to redefine recovery definitions halfway though the trial so that one could be considered bad ill enough to enter the trial and yet recovered at the same time. Its even possible to deteriorate during the trial but still get a recovery score at the end.

How about the use of unpublished criteria like the London criteria. How about the fact that the Oxford criteria, also used, has now had a call to be retired by the IOM. How about changing the very definition of pacing to "adapted pacing therapy", which is not what patients actually practice. How about questioning why they used subjective measures in analysis and dropped all objective measures in the recovery analysis. How about the PIs admission that the trial was not on CFS/ME but on an operationalised definition of fatigue?

We could go on and on.

None of the above has anything to do with even getting to the analysis of the continually withheld data its pure and blatant visible appalling study design.

How about the fact that there is no difference in outcomes between treatments at the 2.5 year study follow up?

How about the fact that they sent out literature halfway through the trial favouring CBT and GET.

How about looking into conflicts of interests with the insurance industry and the fact that the DWP funded this trial?

How about all that?

When something is right infront of your face how about challenging how these studies actually get published instead of putting up some stupid straw man argument over and over again about, "objecting to the stigma of psychological involvement suggestions".

How about looking into the SMC involvement of PR based sensationalism over poorly controlled studies and obviously flawed concepts that actually disprove themselves,

How about it?

 

[Aurator]

This line gets rolled out every time...It does suggest that Smith and others using this line don't listen too well to the critics.

In those who don't deliberately spin patients' own accounts of their objections to attributions to psychological causes, I think it chiefly suggests a woeful lack of imagination. It surely doesn't take much of one to realise that to be told you have a mental illness when all you feel is terribly physically unwell is almost the stuff of nightmares. It has nothing to do with a negative view of mental illness and everything to do with the most basic need of any sick person: to receive appropriate treatment that will help them overcome their illness.

 

[jimells]

Nice to see Simon Wessley tweeting this blog (he's at King's and was until recently Dean there).

I wonder if the rest of the HMS PACE crew realize that Captain Sir Simon is already "accidently" falling into the life boat and leaving the rest of them to go down with the ship. I hope they have life vests handy...

 

[Woolie]

Also I just remembered--was it Wessely who said something along the lines of yeah, I'd say ME/CFS is physical if you also say schizophrenia (and one other, but that's the one I remember) is physical?

But schizophrenia IS physical. In the sense that its not caused by "unhelpful thoughts", but rather by a biological mechanism.
What am I missing here?

 

[jimells]

Would a campaign where we support people with mental illness and speak out against stigma against mental illness do any good? Maybe? Sigh. Of course mental illness is real. I don't care if I have one or not.

I have dealt on and off with depression since high school. I've even publicly testified about being mentally ill. So obviously I am not concerned about "mental illness stigma" being applied to myself. The disease that has wrecked my life is not depression. It is something else. It is not "lack of motivation" that keeps me on a couch - it is exhaustion, migraine, exercise intolerance, and orthostatic intolerance.

The psychobabblers insist my illness is psychological, but they have no theory with evidence that explains how "thinking the wrong thoughts" causes my pulse to spike on standing and immediately return to normal when I lay back down. Psychotherapy has never reduced my hyperadrenergic POTS symptoms, but a tiny dose of a beta blocker does. How about an explanation of that?

Edit to add: feel free to repost wherever it can be useful.

 

[elliepeabody]

I wonder if the rest of the HMS PACE crew realize that Captain Sir Simon is already "accidently" falling into the life boat and leaving the rest of them to go down with the ship. I hope they have life vests handy...

As Cheshire suggested it may be a bit more complex than that. i.e. Captain W is tweeting about Smiths blog the aim of which is to sell the narrative to all and sundry that any negative analysis of PACE data can't be trusted as the 'anti-PACE camp' has an axe to grind and can't be trusted (evidence is harassing phone calls).

So what Captain W might be doing is airlifting the PI's off HMS PACE by helicopter so they can continue with the spin.

 

[chipmunk1]

But schizophrenia IS physical. In the sense that its not caused by "unhelpful thoughts", but rather by a biological mechanism.
What am I missing here?

for us mortal beings the psyche is too difficult to understand.

 

[Woolie]

http://www.plosone.org/annotation/listThread.action?root=6147

Note that Edwards responded to this comment and disagreed with some points made by van der Meer.

Wow, what really strikes me here is that I've never seen a biopsychosocial group criticise another biopsychosocial study in this way, ever. They look after their own.

 

[A.B.]

Wow, what really strikes me here is that I've never seen a biopsychosocial group criticise another biopsychosocial study in this way, ever. They look after their own.

It's almost as if deep down they know that studies without blinding are a joke.

 

[worldbackwards]

I wonder if the rest of the HMS PACE crew realize that Captain Sir Simon is already "accidently" falling into the life boat and leaving the rest of them to go down with the ship. I hope they have life vests handy...

It is very like him isn't it.

 

[Snowdrop]

Nice to see Simon Wessley tweeting this blog (he's at King's and was until recently Dean there).

Umm, why? SW is having his cake and eating it with that position. To me, his taking that position is an indication that behind the scenes he feels pretty sure that QMUL, Kings etc will not be required to hand over the data any time soon. So he can both simultaneously support the statement "oh we shouldn't act as if we're hiding something because we're really not" and help keep the data hidden.

Over and over and over SW and his group have shown only bad faith toward PWME and an unfaltering devotion to protecting themselves in some rather awesome cunning and devious ways.

They have staked their position. While others more peripheral have the chance to reverse their position SW et al have backed themselves into a corner and they will not only fight to protect themselves but will continue to put their energy toward saving face and reputation.

Personally, the fact that he comes out in support bodes ill for actually ever seeing the data. Or alternatively, they've been very busy fudging with whatever data will be released.

Lastly, they are protected politically by powerful people. This is what has allowed them to abuse us with impunity. They have been untouchable. The only way to really stop BPS is to make it so uncomfortable/inconvenient for their backers to protect them that the protectors cut them loose. I wouldn't give SW the time of day.

 

[TiredSam]

As Cheshire suggested it may be a bit more complex than that. i.e. Captain W is tweeting about Smiths blog the aim of which is to sell the narrative to all and sundry that any negative analysis of PACE data can't be trusted as the 'anti-PACE camp' has an axe to grind and can't be trusted (evidence is harassing phone calls).

So what Captain W might be doing is airlifting the PI's off HMS PACE by helicopter so they can continue with the spin.

Who does he think he's spinning to now? There is a new audience of critical scientists watching now, and they are much more likely to see through his BS trickery straight away. He's not manipulating the mass media now, can we hope that the same tricks he's been using for years won't work any more with his new audience?

 

[worldbackwards]

Personally, the fact that he comes out in support bodes ill for actually ever seeing the data. Or alternatively, they've been very busy fudging with whatever data will be released.

Personally, I think people are overanalysing some of this stuff. No one wants to end up on the wrong end of an argument. And it's pretty clear after the last few days that the PACE authors have very little support.

 

[soti]

But schizophrenia IS physical. In the sense that its not caused by "unhelpful thoughts", but rather by a biological mechanism.
What am I missing here?

So as I recall (sorry I'll have to look up sources...), there's been a certain success with the account that environmental factors are supposed to be playing a role, but only if the genetic susceptibility is there. These factors include cannabis use, living in a city, being an immigrant or minority. So I was musing about whether those "psychosocial stressors" were the kind of thing they had in mind for us.

(Not everyone agrees with this account: http://bjp.rcpsych.org/content/164/5/593.short)

 

[Woolie]

So as I recall (sorry I'll have to look up sources...), there's been a certain success with the account that environmental factors are supposed to be playing a role, but only if the genetic susceptibility is there. These factors include cannabis use, living in a city, being an immigrant or minority. So I was musing about whether those "psychosocial stressors" were the kind of thing they had in mind for us.

So, the usual BPS inference: environmental=psychological.

I read an article by Per Fink the other day, which promoted the old idea that gastric ulcers are caused by mental stress (or at least, stress is still a major component). His evidence? Greater reported incidence of ulcers after major natural disasters. Here again, we see the environmental=psychological conflation. Never occurs to him that after such an event, there may be a higher incidence of other infections, poor nutrition, hunger, thirst, disease, etc.

PS interesting article @soti!