Appeal to the FTT for information from QMUL rejected

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.

 

Ooh! Which data is that?

 

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.

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.

 

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!).

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."

 

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:

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.

 

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.

 

But is the (in)adequacy of an answer influenced by the authority and requirement of the questioner?

 

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.

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?