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Queen Mary's appeal ICO decision on PACE data

user9876

Senior Member
Messages
4,556
29. Given the very specific nature of the subject matter, QMUL has explained that the requests need to be handled mainly by one person, Professor Peter White who is the lead Co-Principal Investigator of the trial. Whilst Professor White acknowledges the legal responsibility he has to respond to requests, these take him away from other important responsibilities such as providing responses to Parliamentary Questions from both Houses, finalising the publications which remain, oversight of the current trial of a self-help treatment for patients suffering from CFS/ME, oversight of his research into the causes of this condition and undertaking all of his other academic and clinical duties.

30. In addition to Professor White’s input, the requests take up a disproportionate amount of the Records & Information Compliance manager’s time. Handling FOI requests is only part of the role, and with already stretched resources, this represents a further burden especially when the history of requests suggest that these will continue.

The first sentence here makes a claim that only White can handle such requests but note that they give no actual evidence or reason why this might be the case. They seem to have a style of arguing where they state a claim as a fact but with no supporting evidence. The same was true with protocol changes such as changes to the CFQ scoring - they claimed it would give better accuracy but gave no evidence to support that, quoted no papers and gave no analysis. I wonder if they have such an unquestioning culture that they don't understand what it means to provide evidence to support a case. Of course if the TSG questioned and ask for reasons for things they might have got better and designed a better trial.

We know that QMUL has or had IT support for various tools used to hold and process data within this trial so I wonder how the above statement can be true. I suspect that White (as a professor) has little expertise in using the actual tool set and he is not a statistician. To me it creates an image of White sitting in his office closely guarding the PACE data and carefully controlling access to it in case others looked and found what perhaps that the results have been spun.

I wonder how many request to parliamentary questions he has given and how much spin these responses contained? The implication of his statement is as the Co-PI he is the only person able to make pronouncements on the trial. Politicians were sold the line that this was a well run trial with according to Lord Winston "that cognitive behavioural therapy is effective in something like one-fifth of patients" or Baroness Meacher: "Meanwhile, 60% of patients achieve significant improvements in both fatigue and exercise levels after the same period". Would they be shocked to read Tuller's article pointing out some of the faults. Winston's effective for a fifth seems to match the recovery criteria which were redefined to a very low level. What would Baroness Meacher think on discovering that exercise levels weren't measured and it physical function was measured with a questionnaire subject to trial biases and when the 6mwt or the fitness levels (step test) showed no real differences.

In terms of finalizing publications they have been very slow at publishing. Didn't they say the 2 year follow up data was collected in 2011.
 

worldbackwards

Senior Member
Messages
2,051
Apart from responding to Parliamentary Questions, non of the other things in that list are important responsibilities at all, they are things that he could simply stop doing, thousands of people wish he would. He is a vexatious researcher whose "research" is placing a considerable burden on PWME.
I suspect Parliamentary questions aren't a particularly intensive job either.
 

user9876

Senior Member
Messages
4,556


The last one is interesting since they don't seem to think it is necessary to encrypt PII for staff and students.

I would say their policies look worryingly light weight as a set of security policies for a largish organization.
 
Messages
2,087
Is one issue here that if PACE is exposed to have no benefit for patients, then any patient who has being following NICE guidelines can potentially take them to court for causing harm ?

Sometimes I wish one patient would do just that... It would expose the whole sad story on a large scale
 
Messages
15,786
Is one issue here that if PACE is exposed to have no benefit for patients, then any patient who has being following NICE guidelines can potentially take them to court for causing harm ?
NICE isn't based on PACE at all. The current NICE guidelines pre-date PACE, and rely on other dodgy research by the same people.

PACE has apparently been used to defer reassessment of NICE guidelines for ME, however, since PACE appears to support those guidelines to the illiterate NHS knuckleheads who make such decisions.
 

A.B.

Senior Member
Messages
3,780
I hope that whoever will handle the case from now on realises the contradiction in the claim that the volume of FOI requests are what makes them vexatious. As far as I know, this data has never been published and therefore all FOI requests were refused as vexatious, even the first.

In their typical weasel words they don't mention that the data has never been published, presenting the situation as if these FOI requests were about bothering White.
 

user9876

Senior Member
Messages
4,556
NICE isn't based on PACE at all. The current NICE guidelines pre-date PACE, and rely on other dodgy research by the same people.

PACE has apparently been used to defer reassessment of NICE guidelines for ME, however, since PACE appears to support those guidelines to the illiterate NHS knuckleheads who make such decisions.

If PACE actually shows no gain for patients on objective measures shouldn't this mean the NICE guidelines should be revised.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
My goodness, not only is this man terribly important, but he is clearly a saint! Obviously well above any spinning of research results, only crazies could believe otherwise. What very clever writing on their part!

Obviously Peter White has earned a knighthood. Anybody care to nominate him?
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
Of course, this is a Big Pharma Corporation; they may be relatively untouchable, compared to a university research group.

It depends on how long the disability insurers are willing to offer protection to the Wessely School. Since there is no honor among thieves, I expect that protection will soon be withdrawn. Even if there is "honor" among this bunch, the insurers will eventually figure out that Rituximab treatment paid by NHS (if that pans out) is more profitable for insurers than paying two years of "mental illness" benefits.
 

Aurator

Senior Member
Messages
625
Anybody care to nominate him?
You joke, but people probably already have; the more accolades that influential big wigs in the insurance industry, the DWP and elsewhere can shamelessly contrive to have piled on their patient-bashing foot-soldiers, the more respectable and incontrovertible their foot-soldiers' absurd stance on ME/CFS will appear (to most people) to be. The logic is that if there's a risk of the "science" irrevocably losing some of its respectability, you offset the loss by increasing the respectability of its proponents.
 
Messages
3,263
Is one issue here that if PACE is exposed to have no benefit for patients, then any patient who has being following NICE guidelines can potentially take them to court for causing harm ?

Sometimes I wish one patient would do just that... It would expose the whole sad story on a large scale
This is a nice idea. I suppose you'd need to have a patient who'd paid for the treatment, who could sue for reimbursement of time and money on the basis that the treatment was misrepresented. Trouble is, I don't think anyone has paid directly, at least not in the UK.
 

user9876

Senior Member
Messages
4,556
This is a nice idea. I suppose you'd need to have a patient who'd paid for the treatment, who could sue for reimbursement of time and money on the basis that the treatment was misrepresented. Trouble is, I don't think anyone has paid directly, at least not in the UK.

The NHS is now a commercial market place the clinical commissioning organisations could sue providers for failing to deliver. I suspect that the CFS services will claim to offer NICE approved treatments rather than claiming the PACE 20% recovery rate but it would be interesting to know. I'm not sure those offering GET do follow NICE guidelines that I think suggest using heart monitors. I don't think PACE did this.
 

Chrisb

Senior Member
Messages
1,051
Sly, though, to slip that one in. Hints at the importance of this guy and his obvious superiority to us crazy patient rabble.

Given the importance of the task of providing information for responding to Parliamentary questions one might have thought that the opportunity to have one's findings independently checked would be regarded as entirely beneficial. After all, misleading Parliament is supposedly a serious matter and no-one would wish to do that.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Sly, though, to slip that one in. Hints at the importance of this guy and his obvious superiority to us crazy patient rabble.
I often wonder whether my postman thinks I am very important because I often get letters in official 'House of Commons' envelopes (because I write to - or rather email - my MP quite a lot)!
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
The NHS is now a commercial market place the clinical commissioning organisations could sue providers for failing to deliver. I suspect that the CFS services will claim to offer NICE approved treatments rather than claiming the PACE 20% recovery rate but it would be interesting to know. I'm not sure those offering GET do follow NICE guidelines that I think suggest using heart monitors. I don't think PACE did this.
I didn't know that NICE recommended this, but found it easily on this page under 'Progressing with GET ':

http://www.nice.org.uk/guidance/cg53/chapter/1-recommendations
1.6.2.19 Exercise intensity should be measured using a heart rate monitor, so that the person knows they are within their target heart rate zone.