Appeal to the FTT for information from QMUL rejected

Jonathan Edwards said:
The PACE authors have actually claimed now that they deliberately fiddled the endpoints to suit their expectations.
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I wonder if you could ask another general question at Grand Rounds: “Sometimes it is preferable to divert from pre-registered outcome measures in clinical trials in order to make the results ‘more consistent with the literature, and with [the authors’] clinical experience.’ Agree or disagree?”
 
Robert 1973 said:
One of the things that puzzles me is why the law should consider a campaign to be less legitimate than an individual acting alone.
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It doesn't. But if people are acting together and sending a barrage of requests, then that could lead to a legitimate use of this exemption.


If the law is discouraging collaboration and encouraging people to act alone it seems likely to result in more FOI requests and therefore more disruption – the opposite of its apparent intention.
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Collaboration is fine, but if there is collaboration then the burden of all counts, not just what one individual is sending.

However, @JohnTheJack has done an outstanding job working alone on this and on other FOIs. I also agree with John’s take on the decision. Knowing how precise he is with the framing of his arguments I was very disappointed to see his views on aetiology and BPS research summarised so inaccurately.
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Thanks, Rob


I really don’t get this. I can understand why it would be considered vexatious to submit FOIs with the sole intention of causing disruption. But why should the law be concerned if an FOI reveals evidence of improper actions, which has the effect of causing disruption to those who have acted improperly? Isn’t that the point of the FOIA?
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That is the Commissioner's argument, not the Tribunal's. It is one that I challenged.
 
Robert 1973 said:
One of the things that puzzles me is why the law should consider a campaign to be less legitimate than an individual acting alone. If the law is discouraging collaboration and encouraging people to act alone it seems likely to result in more FOI requests and therefore more disruption – the opposite of its apparent intention.
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I've been pondering this a lot over the past few days (as one does). Much has been made of criticisms and harrassment being part of a "concerted campaign", which as we know is not true in a strict sense, but social media is a tool for just that. The very fact that we are communicating on a forum (or on Twitter or elsewhere) could be viewed in that light. And it does worry me that folks acting alone have the potential to do a lot of damage, particularly if we don't know what others are up to. For example, I was unaware that some were sending barrages of emails to certain people whenever they published a blog about them (or their organisation) - and that could definitely be construed as "harrassment". I'm not sure I would want to be associated with that, but I know I already have been. :(
 
Robert 1973 said:
One of the things that puzzles me is why the law should consider a campaign to be less legitimate than an individual acting alone.
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That's a head-scratcher for sure. More people making the same allegations obviously should make the substance more credible.

That demonization PR campaign certainly did what it intended to do. Wessely's inane rants about "the ME lobby" go back to the late 80's and are still as ridiculous as ever. It will be a terrible look once people understand that all along it was very ill people, barely capable of taking care of themselves, making desperate pleas for help and sanity.

Basically The Killer Rabbit of Caerbannog, except this isn't fantasy so it's just a harmless rabbit but the unhinged rants about its genocidal lethality are real.
 
They even claimed there was a special police unit to monitor the dangerous ME militants. :rofl:

One person I talked to was even convinced there had been a car bomb. I don't know how he got that idea.
 
strategist said:
They even claimed there was a special police unit to monitor the dangerous ME militants. :rofl:

One person I talked to was even convinced there had been a car bomb. I don't know how he got that idea.
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Extraordinary claims that somehow have no evidence.

Almost... like... a... pattern............... Almost.
 
JohnTheJack said:
I'm not sure I fully understand what you are asking.

As may be seen in the decision, I have asked the same questions of a number of authorities and received replies of sorts. I'm intending at some point to write a blog post with the details.
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I was pondering @Jonathan Edwards' post, and whether a FOI request might be less likely rejected if requested by someone acting in pursuance of NICE seeking evidence for a guideline review, and if done with NICE's blessing. But I'm out of my depth on this, just idle musing really.
 
Alvin said:
Do you have a reference on this?
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I'd assume it's a reference to the recent response to Wilshire et al: "We prefer the definitions of recovery we used to those used by Wilshire et al. as they give absolute rates more consistent both with the literature, and with our clinical experience."

https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-019-0288-x

Wessely has said similar things as well. They don't seem to understand the problem with what they're saying, as if redefining 'recovery' in order to produce their desired results is A-okay.
 
strategist said:
They even claimed there was a special police unit to monitor the dangerous ME militants. :rofl:
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I think we may have to be careful about rejecting this claim. It may be that it is a distortion of the truth, displaying the tendency to put SW1 at the centre of the universe, around which all revolve, rather than an outright fabrication.

A few weeks ago I did come across a reference to a police unit which could well have been the one referred to. Given time I might even remember the details. From what I recall it was concerned with the monitoring of persons displaying obsessive behaviours, who might pose a risk. It was not specifically concerned with ME activism and certainly not specifically with SW.

It seems that there may have been exaggeration for the sake of effect.
 
Lucibee said:
I've been pondering this a lot over the past few days (as one does). Much has been made of criticisms and harrassment being part of a "concerted campaign", which as we know is not true in a strict sense, but social media is a tool for just that. The very fact that we are communicating on a forum (or on Twitter or elsewhere) could be viewed in that light. And it does worry me that folks acting alone have the potential to do a lot of damage, particularly if we don't know what others are up to. For example, I was unaware that some were sending barrages of emails to certain people whenever they published a blog about them (or their organisation) - and that could definitely be construed as "harrassment". I'm not sure I would want to be associated with that, but I know I already have been. :(
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I think this is a bit of a problem, but not one unique to ME. I'm afraid it's how things are now.
 
Barry said:
I was pondering @Jonathan Edwards' post, and whether a FOI request might be less likely rejected if requested by someone acting in pursuance of NICE seeking evidence for a guideline review, and if done with NICE's blessing. But I'm out of my depth on this, just idle musing really.
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OK, my understanding of the position is that another FOI request would not succeed.

Whether more information would be forthcoming if a NICE committee addressed this question and asked for something similar as part of its deliberations is a matter of speculation.
 
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Esther12 said:
I'd assume it's a reference to the recent response to Wilshire et al: "We prefer the definitions of recovery we used to those used by Wilshire et al. as they give absolute rates more consistent both with the literature, and with our clinical experience."

https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-019-0288-x

Wessely has said similar things as well. They don't seem to understand the problem with what they're saying, as if redefining 'recovery' in order to produce their desired results is A-okay.
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Wessely said something to the effect that if they did not relax the definition of recovery then nobody would have "recovered". Cue laughter from audience. So funny.

Those two combined make a damning case of obvious fraud but whatever, apparently that doesn't matter anymore.
 
Esther12 said:
I don't know exactly what was said in the submission, but that sounds like a confused point to me - maybe the Judge misunderstood? All health problems will have an underlying pathology and the work from White and colleagues doesn't do anything to show that CFS is a unique condition lacking in an underlying pathology.
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In fairness to the judge, in my Appeal, I stated the following:

many patients believe the model promoted by the PIs, which underpins PACE and which has dominated in the UK for the last 30 years, is itself a form of 'harassment'. We have been made unreliable witnesses to our own bodies and our own illness — except, bizarrely in the trial itself, where patients' beliefs about their illness were used as an outcome measure for interventions designed to challenge patients' unhelpful beliefs. Doctors, families and friends have been told that our belief we are ill is not based on any underlying pathology. It is impossible to describe the pain this has caused very many patients, who frequently tell of how they have been left entirely alone to suffer.
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rvallee said:
Those two combined make a damning case of obvious fraud but whatever, apparently that doesn't matter anymore.
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I don't really understand how they think of their fiddling of criteria to achieve results that fitted with their preconcpetions, but they clearly don't thikn that they've admitted to fraud. I'd like to have them speak more about it. It reminds of of the Wasink blog:

How it all started

On November 21, 2016, Brian Wansink (BW) published a blog post “The Grad Student Who Never Said ‘No’” (note: BW has deleted the post, so I had to link to a cached version), which received heavy criticism for its unconventional career advice as well as the describing questionable research methods.
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http://www.timvanderzee.com/the-wansink-dossier-an-overview/

JohnTheJack said:
In fairness to the judge, in my Appeal, I stated the following:
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Ahh... I see what you were getting at there. Probably a challenging point to make to someone who hasn't been following the history though.

Patients are told that their belief they are ill is not based on underlying pathology but that often seems to be by doctors who have a confused understanding of something they half remember reading/hearing. The problems with the PACE researchers' work has certainly made things worse though.

I'm not sure that it's right to say that there is a model which underpins PACE, other than a form of 'pragmatism' which assumes it's legitimate to manage patient cognitions on the basis of results from poorly designed trials (though the researchers clearly favoured two of the treatments tested and the models underlying them).
 
Esther12 said:
I don't really understand how they think of their fiddling of criteria to achieve results that fitted with their preconcpetions, but they clearly don't thikn that they've admitted to fraud. I'd like to have them speak more about it. It reminds of of the Wasink blog:



http://www.timvanderzee.com/the-wansink-dossier-an-overview/



Ahh... I see what you were getting at there. Probably a challenging point to make to someone who hasn't been following the history though.

Patients are told that their belief they are ill is not based on underlying pathology but that often seems to be by doctors who have a confused understanding of something they half remember reading/hearing. The problems with the PACE researchers' work has certainly made things worse though.

I'm not sure that it's right to say that there is a model which underpins PACE, other than a form of 'pragmatism' which assumes it's legitimate to manage patient cognitions on the basis of results from poorly designed trials (though the researchers clearly favoured two of the treatments tested and the models underlying them).
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Yes, and I think I had in mind the manuals.

The decision does say it is putting things 'crudely' and often quotes other sources about how to describe the illness and the dispute, so I suppose that also is in its favour.

I do think that it shows how things are viewed generally.
 
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