Appeal to the FTT for information from QMUL rejected

rvallee said:
That's what puzzles me the most. The tribunal clearly recognizes your effort was legitimate, well-documented and in good faith while making a pretty good case that QMUL took the opposite approach. Their arguments are barely a notch down from the earlier debunked claims of borderline psychopaths. It mostly seems to boil down to burden, but only theirs, and there is a lot of speculation into justifying it, especially an assumed futility.

It does bolster once more the case that their claims of harassment are exaggerated, which the tribunal notes and yet somehow can't really bring itself to take into account as lowering the credibility of obvious bad faith claims. It's an nth iteration of crying wolf, just not the last one yet.

Classic Picard: It is possible to commit no mistakes and still lose. That is not a weakness. That is life.
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The way I see it is this: they recognize there has been a burden on QMUL (even if some of it has been self-inflicted) and they accept that there has been a lot of requests (and I have made a few of them), and as they point out, I have pretty much had the second part of my request handed to me. The question then is: is there enough value in my request to add to the burden. And they think in all the circumstances probably not. They have then, overturned all the nasty stuff, rapped QMUL and the IC on the knuckles and then told me not to push my luck and leave it at that. I can live with that.

Someone who knows about this stuff has described the decision as follows:

'At the end of the day the Tribunal didn’t believe that the requested data would be reliable enough to justify the effort to produce them. But they were obviously impressed with the way you made your case - and dismayed by the way the ICO made its.

I think you should be proud of this decision...'
 
rvallee said:
The models have no mention of any pathology and describe an assumed, vague behavioral loop. They don't say it explicitly, they just never mention any pathology. That's kind of the same in the end, though. It's not necessary to explicitly use a slur to be racist or sexist.
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Actually the manuals do describe the thinking behind CBT and GET and specifically say something like (can't remember exact wording) they're based on there not being a pathological reason for the symptoms.
 
JohnTheJack said:
Actually the manuals do describe the thinking behind CBT and GET and specifically say something like (can't remember exact wording) they're based on there not being a pathological reason for the symptoms.
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APT: "It is assumed that the symptoms reflect a pathological disturbance, which is not reversed by undertaking increases in activity."
CBT: "Participants are encouraged to see symptoms as temporary and reversible and not as signs of harm or evidence of fixed disease pathology."
GET: "Participants are encouraged to see symptoms as temporary and reversible, as a result of their current physical weakness, and not as signs of progressive pathology."

But "encouraged to see" is not the same as "based on" or "are in reality". They are very careful *not* to say there is "no pathological reason for the symptoms". They believe they can change pathology by changing thinking.
 
Lucibee said:
APT: "It is assumed that the symptoms reflect a pathological disturbance, which is not reversed by undertaking increases in activity."
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In the APT manual they are saying this is the theoretical model behind pacing. But they are not saying they agree with it, so far as I can see. Indeed the thrust of PACE was to disprove it; they wanted to show that APT would not work.
Lucibee said:
GET: "Participants are encouraged to see symptoms as temporary and reversible, as a result of their current physical weakness, and not as signs of progressive pathology."
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Here in this theoretical model they clearly state their deconditioning theory, and their endorsement of it is evident. So their primary objective with GET is stated as changing behaviour so as to change physical activity and overcome the physical function deficit with improved fitness. Interestingly in this section they mention that symptoms (subjective ones inevitably) improve simply due to GET, whereas function relates to fitness.
 
If they mention worthless HPA axis stuff as part of a pathological model underlying CBT that wouldn't do anything to make the problems with the PACE any less worrying. (I can't remember if they do mention that HPA axis stuff there, but the researchers have done so elsewhere).

Also, the models of illness that led to the development of CBT/GET/APT might be wrong, but the treatments could still be useful. Alternatively, the models might be right but the treatments useless or even harmful. When it comes to assessing whether a treatment is useful the underlying models do not matter much - the problems with the design and conduct of trials do.

The models underlying CBT and GET do seem to have played into some dismissive attitudes that patients have faced but it's not clear to what extent those who promoted these models bear responsibility for this and I think that it's worth avoiding this whole topic unless you're communicating with someone who will really take the time to understand every little detail, check the context of every quote, etc. It keeps leading to confusion and working against us imo. It's a really complicated topic and trying to explain all of the details seems to make peoples' eyes gloss over, and then they will often imagine they've heard a simplistic argument that makes patients sound misguided.
 
Lucibee said:
APT: "It is assumed that the symptoms reflect a pathological disturbance, which is not reversed by undertaking increases in activity."
CBT: "Participants are encouraged to see symptoms as temporary and reversible and not as signs of harm or evidence of fixed disease pathology."
GET: "Participants are encouraged to see symptoms as temporary and reversible, as a result of their current physical weakness, and not as signs of progressive pathology."

But "encouraged to see" is not the same as "based on" or "are in reality". They are very careful *not* to say there is "no pathological reason for the symptoms". They believe they can change pathology by changing thinking.
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Thanks. Yes, that is what I was thinking of, and you are right that they have worded it carefully.
 
Barry said:
Ooh! Which data is that?
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Data I first requested in October 2016. The IC decided QMUL held the data but were unable to provide it. I appealed. The Tribunal hearing was set for November, but then postponed for a full-day hearing in February. QMUL has though agreed to try to provide it and so I withdrew the appeal. The Tribunal said it would reinstate the appeal if the data are not released.

I think there is a thread on here which discusses it.
 
JohnTheJack said:
Data I first requested in October 2016. The IC decided QMUL held the data but were unable to provide it. I appealed.
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Yes. This part of the original rejection decision is pretty laughable, and even if taken at face value, at the very least advertises QMUL's ineptitude:

"QMUL has explained that the Chief Investigator of the PACE trial retired from QMUL on 31 December 2016. While QMUL remains the holder and owner of the raw data from this clinical trial, it has effectively lost the means to locate and extract it because this requires specialist knowledge. There is no longer anyone at QMUL with the ability to produce data from this trial. QMUL no longer employs anyone involved with the PACE trial."

In reality comes across as a pretty pathetic excuse, and just strengthens the feeling there are data QMUL would prefer not be made public.
 
wrt the section "Factual background" - I'd be interested to know how @JohnTheJack would prefer point 3 to be rephrased... (The first sentence made me wince, so I dread to think what it did to John!).
3. Mr Peters suffers from chronic fatigue syndrome (CFS). The term CFS is often, but not always, used interchangeably with myalgic encephalomyelitis (ME). The Tribunal will refer compendiously to CFS/ME. Mr Peters and others are much exercised by some of the research carried out into the condition. In brief and probably crude summary, he and other sufferers believe that the condition’s aetiology is physiological rather than psychological; they dispute research findings which indicate the contrary. At least some sufferers believe that there is an underlying infection or muscle disease.
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ETA: I've had a go at the first bit:

"3. Mr Peters suffers from myalgic encephalomyelitis (ME). However, many researchers use the term CFS, which they often, but not always, use interchangeably with ME. The Tribunal will refer compendiously to CFS/ME. Mr Peters and others are critical of some of the research carried out into the condition."
 
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If I believed that ME was accused by tartan unicorns practising voodoo on live haddock would that be in there?

No, because it has no relevance to this particular case, neither does their last sentence, what other people may or not believe.....honestly!!

It's, as previously mentioned, deferring to eminence, implying that such people are clearly deluded.
 
Well, done John. I think few could have handled this as well as you have.

It's unfortunate that the Tribunal still regards this request as vexatious because they've agreed that it is well-reasoned and that your motive is to get to the truth. There seems to be a discrepancy between how the term 'vexatious' is used in legal terms and what it means in ordinary language.

The ICO decision notice defined vexatious as follows:
11. The term ‘vexatious’ is not defined in the FOIA. The Commissioner has identified a number of ‘indicators’ which may be useful in identifying vexatious requests. These are set out in her published guidance on vexatious requests. In short they include:
  • Abusive or aggressive language
  • Burden on the authority
  • Personal grudges
  • Unreasonable persistence
  • Unfounded accusations
  • Intransigence
  • Frequent or overlapping requests
  • Deliberate intention to cause annoyance

12. The fact that a request contains one or more of these indicators will not necessarily mean that it must be vexatious. All the circumstances of a case will need to be considered in reaching a judgement as to whether a request is vexatious.
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Your request does not meet most of these descriptions. It probably (as Esther pointed out the tribunal doesn't actually know this) causes some burden to QMUL, but that isn't sufficient to label a request as vexatious.

The main argument for denying your request seems to be that it will probably not lead to useful information. I got the impression that the tribunal expects that QMUL has no or very few documentation of harassment regarding the PACE trial. But they argue that this wouldn't mean much because they think cases of harassment would rarely be reported.
So it would not disprove any claims of harassment by PACE trial researchers and their institutions.

In one interesting passage, the tribunal suggests that there is already sufficient information to doubt the veracity of these harassment-claims:
It bears in mind that there is already considerable information in the public domain which Mr Peters and others can use to support their hypothesis – for example, articles by other scientists and the apparent paucity of evidence of harassment which QMUL was able to lead in Matthees. The additional information Mr Peters requests would add little to the debate, but seeking to identify it and then assessing whether any exemptions applied would represent significant additional burden for the university.
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I don't know how much of a burden to QMUL this would have been. I do know the claims of harassment have been damaging to ME/CFS patients and critics of the PACE-trial.
The tribunal agrees that there are reasons to doubt the claims by QMUL and the PACE-authors regarding harassment. To me, that would be sufficient ground to place a (potential) burden on QMUL to offer clarification about their recorded documentation on harassment regarding the PACE trial.
 
Lucibee said:
wrt the section "Factual background" - I'd be interested to know how @JohnTheJack would prefer point 3 to be rephrased... (The first sentence made me wince, so I dread to think what it did to John!).


ETA: I've had a go at the first bit:

"3. Mr Peters suffers from myalgic encephalomyelitis (ME). However, many researchers use term CFS, which they often, but not always, use interchangeably with ME. The Tribunal will refer compendiously to CFS/ME. Mr Peters and others are critical of some of the research carried out into the condition."
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I think I'd say something like:

3. Mr Peters has myalgic encephalomyelitis (ME). The term chronic fatigue syndrome (CFS) is often, but not always, used interchangeably with myalgic encephalomyelitis (ME). The Tribunal will refer compendiously to ME/CFS. Mr Peters and others are critical of some of the research carried out into the condition. In particular, research claiming the efficacy of an approach focused on changing patients' beliefs and gradually increasing activity is highly disputed. The patients reject both the findings and the conclusions drawn from them.


If I believed that ME was accused by tartan unicorns practising voodoo on live haddock would that be in there?

No, because it has no relevance to this particular case, neither does their last sentence, what other people may or not believe.....honestly!!
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All decisions include background, so it is relevant.
 
Michiel Tack said:
Well, done John. I think few could have handled this as well as you have.

It's unfortunate that the Tribunal still regards this request as vexatious because they've agreed that it is well-reasoned and that your motive is to get to the truth. There seems to be a discrepancy between how the term 'vexatious' is used in legal terms and what it means in ordinary language.

The ICO decision notice defined vexatious as follows:

Your request does not meet most of these descriptions. It probably (as Esther pointed out the tribunal doesn't actually know this) causes some burden to QMUL, but that isn't sufficient to label a request as vexatious.

The main argument for denying your request seems to be that it will probably not lead to useful information. I got the impression that the tribunal expects that QMUL has no or very few documentation of harassment regarding the PACE trial. But they argue that this wouldn't mean much because they think cases of harassment would rarely be reported.
So it would not disprove any claims of harassment by PACE trial researchers and their institutions.

In one interesting passage, the tribunal suggests that there is already sufficient information to doubt the veracity of these harassment-claims:

I don't know how much of a burden to QMUL this would have been. I do know the claims of harassment have been damaging to ME/CFS patients and critics of the PACE-trial.
The tribunal agrees that there are reasons to doubt the claims by QMUL and the PACE-authors regarding harassment. To me, that would be sufficient ground to place a (potential) burden on QMUL to offer clarification about their recorded documentation on harassment regarding the PACE trial.
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Thanks, Michiel.

It is indeed a legal interpretation.

I don't really have much to add to my replies above.
 
Jonathan Edwards said:
I wonder what the position would be if information such as this was requested by an expert witness to the NICE guideline review committee for ME/CFS as important background material to assessment of trustworthiness of evidence?

Just another random thought.
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And an interesting one.

In case of misunderstanding, I would point out that should anyone be considering asking something similar as an FOI request, it would be seen as 'vexatious', not only on similar grounds (value to burden) but as an 'asked and answered so simply nuisance'.
 
JohnTheJack said:
In case of misunderstanding, I would point out that should anyone be considering asking something similar as an FOI request, it would be seen as 'vexatious', not only on similar grounds (value to burden) but as an 'asked and answered so simply nuisance'.
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But is the (in)adequacy of an answer influenced by the authority and requirement of the questioner?
 
Jonathan Edwards said:
I wonder what the position would be if information such as this was requested by an expert witness to the NICE guideline review committee for ME/CFS as important background material to assessment of trustworthiness of evidence?

Just another random thought.
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Well, it has been quite loudly alleged that this campaign is having a "severe impact" on research, especially "chasing away good researchers". On multiple occasions. With a shifting narrative. Wessely and Sharpe have been very explicit in their opinion that this is "harming patients". Those are serious claims that oddly only seem to be made in the most possibly vague and nonspecific language.

It would be odd to have such a large, international, campaign making serious allegations without making sure of the veracity and accuracy of those claims and how they would impact the implementation of clinical guidelines. Quite odd.
 
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.

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.

47. The Commissioner defended her decision and its reasoning in her Response (see
below). A campaign need not be aimed at causing disruption; it was enough if it
had that effect. As to the value of the requests, she suggested that they were
essentially secondary or parasitic, designed to elicit information about the
controversy arising from PACE rather than information about the trial itself. That
substantially reduced the level of public interest.
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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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