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Queen Mary and PACE, just what is their case?

Graham

Senior Moment
Messages
5,188
Location
Sussex, UK
Why is Queen Mary so scared,
Of having the PACE data aired?
Does her hostility,
Hide her fragility,
Knowing the work is impaired?

While we are waiting for the ruling on Alem Mattees' FoI request by the tribunal, you might like to look at this to see what lies behind the attitude held by Queen Mary University.

When the PACE trial was being set up, a STEP test was added to the list of assessments, and was touted as being able to provide good evidence that patients with CFS/ME truly were just reconditioned. But when the first report came out in The Lancet in 2011, nothing was said about this. It wasn't until late 2015 that the results appeared, and then only as a small graph of average group performances in a highly technical, statistical paper which looked at factors that affected the likelihood of improvement. It was quite clear, even from that small graph, that there were no differences between the groups that had undergone CBT or GET, and the groups who had not.

I wanted to put together a summary of all the objective data on the effectiveness of CBT, so put in a request for the actual 32 data values used to produce the graph. It was refused. I appealed to Queen Mary, and this was rejected. I appealed to the Information Commissioner, who upheld the refusal. My request was "vexatious".

I was sent a copy of a 14 page submission by Queen Mary as to why my request for the actual values of 32 items of data already published in graphical form should be refused. I have been assured by the Information Office that I am free to let others see this, so you may be interested to look through it.

The fact that I am a member of Phoenix Rising is held to be a strong point against me. In fact most of the document contains crticisms of the members of PR rather than of me.

Do you think that they don't appreciate my contributions to the Limerick thread?
 

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Graham

Senior Moment
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5,188
Location
Sussex, UK
It is in a compressed format, but if you still have problems, let me know and I'll try to provide a pdf file.

I've just created it in pdf: is that better?
 

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user9876

Senior Member
Messages
4,556
Interesting how they say they (or their sponsors) have spent 15k making papers available but not mentioned the 200k they spent keeping data secret.

They also say that the purpose of requests is to discredit them but if they have handled things properly the data and other information should not discredit them.
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
Love the logic of this from the bottom of p.10:

... comments on the BMJ website are all from those opposed to PACE. ... This demonstrates that there is a collective action being waged by sections of the CFS/ME community against QMUL

How about:

All those who commented on the BMJ website are opposed to PACE ... This demonstrates that there is unanimous concern amongst BMJ readers about the evidence / lack of evidence used by QMUL to support the conclusions of the PACE trial.

Another thing that caught my eye:

Moreover, as there is no longer a statistician employed by the PACE trial ...

You mean there was one :jaw-drop:? I use the jawdrop emoji advisedly. I wonder who it was, and if they are a member of the Royal Statistical Society, and whether they’d like to respond to Julie Rehmeyer’s recent critique?

... one would need to be recruited for this operation and trained.

Isn't a statistician supposed to be qualified before they apply for a job? Who's going to do the training if the PACE trial hasn't got a statistician? Peter White?

The length and complexity of certain correspondence would also indicate a degree of obsessiveness from requesters.

Of course, the obligatory diagnosis of those with opposing viewpoints. Why not just call it Pervaisive Request Syndrome and publish a paper on it?
 

snowathlete

Senior Member
Messages
5,374
Location
UK
At some point the unethical attacks on patients are going to get noticed by someone in a position of authority who will see it for what it is, and I think it will lead, eventually, to an investigation of cases where they have taken action improperly against patients. Cases like these will be reviewed, and the accusations they have made will be scrutinised against actual evidence.
 

Graham

Senior Moment
Messages
5,188
Location
Sussex, UK
"Pervasive"???? From what I understand there have been about 38 requests, many of them just variations of others that were refused in the hope that a modified request might succeed. Now if they had had more like 10,000 I'd have been more understanding, but for the kind of money they are getting, less than one enquiry a month is nothing to complain about.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
Why not just call it Pervaisive Request Syndrome and publish a paper on it?
:p :rofl:

do you think they'll use a statistician for that paper? This could work in our favour if the conclusion was that the PRS group made fewer requests at the end of the trial then when they entered to be qualified as having the syndrome. Surely someone would question the logic of that.
 
Messages
13,774
I wonder if QMUL are genuinely clueless as to why so many patients are concerned about the PACE trial, or if they've cynically decided that they're going to try to promote and then hide behind prejudices about the patients they claim to be helping.

I meant to just pull out the most annoying bits... but it seems that was most of it. They complain about people criticising what they write with "obsessional attention to detail", so they might not like the length of this post.

QMUL's submission really seems to imply that Science should be a criticism free 'safe-space' where sensitive little researchers get to claim whatever they like without being criticised by the patients whose lives are being affected by their errors and misrepresentations.

Some of their complaints about patient's comments reminded me of this quote: "I understand that truth is considered a libel in speaking of such people."

Unfortunately there exists a community whose members are driven to challenge the outcomes of studies with results which do not comport with their beliefs as to the causes and treatment of CFS/ME.

Nothing to do with the problems with the trials design, or the way results were spun then?

As will be discussed below, after five years, the PACE team now feel harassed by these requests and believe they are vexatious. The trial team have made sure that all papers are free for any member of the public to read, which has cost the team, their funders and sponsors some £15,000 in fees to publishers. They have also provided a website giving the latest information about the trial, including 56 frequently asked questions

LOL - how commited they are to transparency and engaging with patient concerns. As User said, no mention of the 200k they spent fighting against the release of data. No explanation as to who decided which questions were most 'frequently' asked - looks to me like they avoided all the difficult questions patients want answered and produced a piece of propaganda as an 'FAQ'.

With regards to the complainant’s present request, QMUL acknowledges that information has already been published in graphical form (although this was mean and confidence intervals rather than standard deviation) and that it might not be difficult to produce the requested information. However, it is the requester and the context of the request which it believes justified its refusal under s.14(1). Although the current request was the first since August 2014, if QMUL should start to respond to PACE-related requests again, it feels that it could encourage more when it has effectively tried to draw a line.

So they just want to cut off all information requests related to the PACE trial?

Indeed, a new request was received on 1 November 2015. There is always a flurry of activity on social media when a Decision Notice or a new research paper is published. Even though the complainant has never submitted an FOI request to QMUL, his assumption “my scepticism of the conclusions of the PACE trial, and my wish to analyse the data for myself has played a part here,” says a lot about his view of PACE.

OMG - he's sceptical of the conclusions and wants to analyse the data himself?! Vexatious!

He has also recently written a parody of a defence of PACE by Sir Simon Wessely. The complainant is also a contributor to the MEAnalysis YouTube channel (https://www.youtube.com/channel/UCvWxvwftcLjIQniW3Dgzm5w, and websites (http://evaluatingpace.phoenixrising.me/homepageanim.html and http://meanalysis.blogspot.co.uk/, which are designed to challenge PACE.

Very bad Graham. Parody! Criticism! Of authority? What sort of country do you think this is?

There is a belief amongst these individuals that QMUL is trying to withhold information which the requesters imagine might discredit the trial and it is QMUL’s belief that there is a campaign to attempt to do this. This is despite the fact that the results from PACE have been and continue to be published and have been independently verified. Certain individuals simply do not accept this.

LOL. What, specifically, is it that Graham, or other patients concerned about PACE, do not accept that QMUL think has been shown to be true?

See for example

http://forums.phoenixrising.me/index.php?threads/pace-trial-and-pace-trial-protocol.3928/ which has had over 2600 posts since May 2010 and the petitions to the government against Professor White.

Difficult for them to cite that thread, yet still claim that their 'FAQ' answers the most frequently asked questions.

Much can be read in to this post from the above thread on the Phoenix Rising Forum by one of the Lead Moderators: “Let’s have some more FOI requests please… I always thought FOI requests were our best weapon and we need to play that card much more strongly in all areas”.

I read it as being a comment from someone who realises that transparency and accurate information are important 'weapons' against spin and misrepresentations. (Feel a lot of sympathy to Mark for the way QMUL have used this comment too. Also... to Mitchell who had that Tribunal judgement against him that seemed to completely misrepresent his arguments, and has since been used by QMUL to try to prevent other patients get access to important information).

There is even a hashtag on Twitter, #PACEtrial, which individuals and even patient organisations use to promote attacks on the trial. The tweets using this hashtag use language such as “rubbish”, “fraudulent”, “sleight-of-hand”, and “unscientific claims”. It is not used to promote or support PACE in any way. Hostility would not be too strong a word as it includes mocking of QMUL’s refusals of requests. #PACEgate is also used to criticise the trial.

OMG - there's even a hashtag! They use the term "sleight-oh-hand"? Vexatious!

Do QMUL realise that, if they wanted, they could join the debate? Try to defend their 'recovery' claims?

Other contributors have written to, or made comments on the British Medical Journal’s website

See for example http://www.bmj.com/content/347/bmj.f5963?tab=responses (accessed 07/12/15)

How is that evidence of a vexatious campaign? A lot of those responses do a good job of showing what a flawed piece of research PACE is.

The complainant has directed a series of videos “illustrating some of the absurdities of the PACE trial and its subsequent series of papers”. The names of the contributors, along with their world views, are all in the public domain.

If you make absurd claims, people should be allowed to point this out. Sorry.

There is even an online wiki, which it seems is solely aimed at complaining about and attempting to demean the PACE trial, and certain individuals clearly dedicate a lot of time to authoring negative and arguably offensive pieces about researchers and PACE, see for example http://forums.phoenixrising.me/inde...eter-white-lessons-from-the-pace-trial.29345/.Whenever anything is published about PACE, and now also about ICO or Information Tribunal decisions relating to PACE, there is a concerted effort by a small number of people to write replies in an attempt it seems, to dispute all issues and introduce counter arguments. This can be witnessed by comments made on WhatDoTheyKnow.com, on the British Medical Journal rapid responses and on the Information Rights and Wrongs blog, among others.

That thread is their example of offensive pieces on PACE? They are sensitive souls. Graham didn't even post in that thread. What's the problem with introducing counter-arguments?

The complainant is one of the main authors of the Evaluating PACE web site. He is linked to a number of other campaigners by that web site and the Phoenix Rising Forum.

Sorry Graham - an ME/CFS patients posting on the world largest ME/CFS website is a sure sign they're connected to trouble makers.

QMUL’s strategic aims are to create and disseminate knowledge and its staff have a right to be able to carry out the research on which they decide and their peers review. If staff are required to carry out unplanned analysis on data at the whim of any external party, it takes those staff away from their core duties and impacts on the primary purpose of the institution.

This was a request for result which were published in graph form... how much less time would it take to release them than produce this bizarre document? More generally, if they make errors, they should be forced to correct them. If they don't want to conduct the analyses they pre-specified then they need to release the data which will let others do it.

Although the quantity of requests alone cannot be said to have been overwhelming, the persistence and the aggregated burden on staff, especially when requests are escalated to the ICO and Information Tribunal, has been of growing concern and has had a detrimental effect on QMUL as expanded below.
So the requests for information aren't much of a burden, but fighting against the release of information costs a lot of time and trouble?

QMUL did at one point receive five emails in one week from one requester, though. These were not actually separate requests but requests for clarification, internal review and acknowledgement of receipt. Overall there have been 37 distinct requests to date, plus follow-ups.

It's like they know that they're examples of vexatious behaviour are rubbish, but they're still plowing on with them. Also, is this person who dared e-mail them five times in one week connected to Graham in any way?

Prof. White has been personally targeted in the past. Papers which are published are analysed in minute detail, for example at http://forums.phoenixrising.me/inde...in-the-pace-trial-of-therapies-for-cfs.29882/ where one poster comments among other things, “This part is complete trash, resulting from their insistence in using questionnaires which are grossly inappropriate for patients with physical disability. Apparently not being capable of doing things we used to do, even if we want to do them, means we're depressed. Whoops! Or it just means they're a bunch of idiots. I favor the "idiot" theory - it's much better supported by the available data.”

The 'idiot theory' is the closest they've come to finding really harsh criticism.... if that's a real problem for them then they're just not suited to modern life, are they?

Prof. White states: “These serial requests have caused my colleagues [who are external to QMUL] and me annoyance and frustration, and in my opinion they are clearly part of a campaign to discredit the trial, and are not in the public interest.” He is the one at QMUL with the knowledge and expertise meaning he must bear the brunt of such requests; the correspondence can be lengthy and complex and takes him away from his other work.

If White is dealing with the requests, he must be aware of the errors they've pointed to in the PACE recovery paper. Why has he not corrected these errors?

However, the FOI requests and other complaints to other parties would suggest that these individuals are looking for anything and everything to somehow find fault with the PACE trial and persist with new requests over time despite the publication of papers from the trial and in spite of refusals and Decision Notices. It is in this wider context that QMUL argues that the present request may be seen as vexatious at this point in time and that at least part of the motive is to create a burden to QMUL and in particular Prof. White.

This was written post-Tuller, when a litany of researchers had already joined patients in pointing out the many serious flaws to be found with the PACE trial. We're sorry that we've found so many faults with the PACE trial.. but doesn't White share some responsibility for that?

Up to this point QMUL has provided information wherever it could and used exemptions only in line with guidance and the law as appropriate.

So QMUL would have loved to provide information on the results for the PACE trial's pre-specified outcomes, but was just unable to do so? I don't think that's true.


The whole 'harassment' section needs to be quoted:

3. Harassment


Harassment is in many ways linked to the burden on staff. In this particular case it is possible that the ultimate aim of some of the requesters may be to prevent Prof. White from continuing his research by constantly questioning and criticising it, looking for any slight inconsistency and taking him away from his other duties and present clinical trial. It is also the case that the requests are likely to continue given the wider context and history. A recent comment directed at Prof. White and colleagues reads, “Our PACE authors have 2 years before their careers are over and they face justice. They will come out fighting I am sure but don't worry, every day is one day closer to the end for these fraudsters. In the meantime we can enjoy turning the screw on them”.


This is but one example. It does not matter that the preceding quote is not about FOIA; it demonstrates the animosity and the use of any means to put pressure on Prof. White and colleagues.


Prof. White has previously been harassed by certain individuals who do not agree with his research and, for instance, often receives emails asking him opinions or to defend a position, examples of which have been previously provided to the Information Tribunal. As mentioned above, he has also been the subject of petitions to government, at least one of which was set up by one of the FOI requesters to QMUL. It is his view that, after such time as this correspondence has continued, the requests are having the effect of harassing him personally. Moreover he considers that researchers will be put off from entering or staying in this area of research by such actions and the generally adversarial nature of this area of medicine. QMUL has supplied the Commissioner previously with an article demonstrating the concerns in this area. The Guardian has also published a similar article.


Decision Notice FS50568116 found that the online presence of the requester criticising the public authority contributed to the verdict that the request was vexatious. The latest campaign against PACE can be found at http://www.meaction.net/pace-trial/ which includes another petition; this one is entitled ‘Misleading PACE claims should be retracted.’

[17] http://forums.phoenixrising.me/index.php?threads/trial-by-error-continued-pace-team%E2%80%99s-work-for-insurance-companies-is-%E2%80%9Cnot-related%E2%80%9D-to-pace-really.41309 (accessed 27/11/15)

[18] Hawkes BMJ 2011; 342:d3780

[19] http://www.theguardian.com/politics/2011/may/25/freedom-information-laws-harass-scientists (accessed 02/12/15)


That doesn't really need comment, but I thought I'd point out that the comment 'directed at' White and colleagues was just a post here which mentioned the PACE authors, and assumed that positive results from the rituximab trial would undermine their careers. I'm not sure how it shows "the use of any means to put pressure on Prof. White and colleagues". How could that quote be taken to show a willingness to use violent means to put pressure on White? Or sexual means? Or anything?

All of section 4 "Unreasonableness" is worth quoting too... but this post is already too long. Even if the author of this piece was unable to understand the problems with the PACE trial themself, this is post-Tuller... there were plenty of authority figures criticising the trial too. Something I found really interesting about the 'unreasonableness' section, is that they don't try to show that the criticism being made of PACE, or decisions to refuse FOI requests are inaccurate or irrational, but just that they do not respect authority. For them, it seems that to be 'unreasonable' one does not need to be 'irrational', but rather just dissent from authority.

One eg:

Following Decision Notice FS50558352, the requester wrote a 3000+ word response linked from
https://www.whatdotheyknow.com/request/timing_of_changes_to_pace_trial#comment-59096 in which he is critical of the ICO and simply does not appreciate the background to his request at all, supporting QMUL’s view of the unreasonableness and obsessiveness of such requesters. The thread from Phoenix Rising resulting from this includes the comment, “The Commissioner's entire decision notice is a shockingly unreasonable, defamatory, and partisan response”.
I've read that response, and it that is one of the best examples of 'unreasonableness' they can find, they're in real trouble. I thought it was a really reasonable and careful piece of writing.

They do not believe in it and therefore they attack it, often with obsessional attention to detail and a refusal to accept the integrity of the science.

Obsessional attention to detail is not a bad thing in science.

However, there is a fundamental difference where research data has been collected from a clinical trial and consists of personally identifiable information. The PACE trial data consists of substantial quantities of sensitive personal data. Privacy, consent and participants’ reasonable expectations must be taken in to account when considering its use, storage and release. There is no justification to disclose such information where the individuals are likely to be identifiable, even if the present request does not fall in to this category.

The present request does not fall in to this category, and I can only think of one request for information which could mean that individual participants were possibly identifiable.

QMUL also takes in to account that some of the requests have been repeated, on one occasion where the requester stated that the sole purpose for this was so that it could be escalated to the ICO because of “timing issues”. Though this is a valid reason for resubmitting a request, the motivation was not to obtain information, but to create more work by appealing to the ICO as he expected it to be refused. No appeal had been made when the request was refused the first time it is claimed because the requester did not get round to it.

I wonder if the requester suffers from a serious and variable health condition? What a burden that would be for QMUL.

The current request is not necessarily lacking serious purpose; QMUL has provided explanations and data wherever possible when previous PACE-related requests have been received in the past. As described above, it is not onerous to supply the data, but QMUL considers in the end that the refusal is justified at this point in time given the context and history.

Interesting to feel part of a group that institutions think should be treated like that.

OT:

The Medical Research Council has also received FOI requests about PACE, one of which was from a requester who has sent three requests to QMUL and the nature of which - asking for the accounts of a sponsored clinical trial - it has told QMUL is unprecedented.

That sounds interesting. I wonder what happened with that? I think that finding out more about how poor research is financed and assessed by people like the MRC could be really interesting.
 
Messages
13,774
And this is made all the more annoying because the ICO seemed to fall for it... from their decision:

106. QMUL has explained that its strategic aims are to create and
disseminate knowledge and that staff have a right to be able to carry
out the research they decide upon, which is reviewed by their peers.
Handling requests for information takes staff away from their core duties
and impacts on the primary purpose of the institution. Furthermore, the

Commissioner is satisfied that QMUL has in place appropriate processes

for review and dissemination of information relating to the PACE trial.

107. Whilst the Commissioner accepts that the PACE trial and its results are
of significant interest to the ME/CFS community, he also accepts the
argument that there is a campaign focussed on attacking and
attempting to discredit the trial rather than on obtaining useful
information about this topic.
108. The Commissioner therefore accepts the argument that this request has
been submitted as part of an opposition campaign which refuses to
accept the integrity of the science behind the PACE trial. He therefore
considers the nature of this campaign has an effect on the purpose and
value of the request.

114. In terms of academic freedom, the Commissioner notes that Professor
White has sought to publish a lot of information about the trial.
Irrespective of this he has been put in a position of handling FOIA
requests about his research. There is no question that the number of
FOIA requests indicates an attempt to discredit the trial. This in turn
undermines the ability of Professor White and his colleagues to retain
that academic freedom.
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
Unfortunately there exists a community whose members are driven to challenge the outcomes of studies with results which do not comport with their beliefs as to the causes and treatment of CFS/ME.

There is a belief amongst these individuals that QMUL is trying to withhold information which the requesters imagine might discredit the trial

They do not believe in it and therefore they attack it, often with obsessional attention to detail and a refusal to accept the integrity of the science.

Anyone else notice the pervaisive use of "belief" or "believe"? Why are they talking about the PACE trial in terms of belief or otherwise? It's supposed to be science. It is not a question of whether ME sufferers believe or don't believe their conclusions, the point Peter White is determined to miss is that it is now so apparent that the PACE trial conclusions are based on dodgy evidence and methodology, that any scientist or ME sufferer has a strong interest in getting the data to check their work. That's how science works, so if Peter White really considers himself a scientist, he should be engaging with his scientific colleagues to discuss his data and conclusions in a transparent way.

He talks about science when referring to himself and the PACE trial, and about people who question his conclusions in terms of believers or non-believers. He's got it the wrong way round - he is the one peddling a belief system, and the people who are questioning it are doing so on a scientific basis. The 42 signatories to the recent open letter to the Lancet were not a small group of militant patients suffering from false illness beliefs, they were internationally renowned scientists. The audience sitting in Chicago last week with their jaws on the floor was North America’s largest gathering of statisticians, organised by the International Statistical Institute and major national statistical associations such as the American Statistical Association (ASA) and the UK’s Royal Statistical Society.

All you have to do is brand your questioners as disobedient disbelievers to get a FOI refused? QMUL got away with that?
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
At @Graham — did you have any right of reply to this 'argument' re motive from QMUL? If not, then the process is hardly a just one. QMUL's submission is a smear on you, suggesting that you're a shill for some conspiracy to discredit the PACE authors. I suspect the ICO had very little context here. Their ruling:

107. Whilst the Commissioner accepts that the PACE trial and its results are
of significant interest to the ME/CFS community, he also accepts the
argument that there is a campaign focussed on attacking and
attempting to discredit the trial rather than on obtaining useful
information about this topic.

suggests no awareness of the now numerous criticisms of PACE by medical-scientific heavyweights who could hardly be lumped into this fringe conspiracy theory.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Dont worry, you are apparently vexatious.. while I apparently have narcissist tendancies (that's actually written in my medical file along with other insulting stuff after I complained about a nurse who treated me very badly).

We are all expected to be quiet about any abuse or wrong doings going on.
 

user9876

Senior Member
Messages
4,556
I see QMULs view being that patients should not be allowed to interpret, discuss and criticize medical research that is behind treatments they consider. Instead academics and universities should interpret the research for the poor patients. A very paternalistic (but perhaps British view). Any challenge or discussion is seen as a threat to their status as academics by patients is clearly harassment. This view also comes out in other pieces where they say data should only be shared between academics (with an approved plan).

Of course patients are intelligent people and should be allowed to look and discuss the research. This discussion is what draws many of us to PR and what leads to such long threads on influential papers. Where patients see bad methodology we should call it out and expect answers not universities closing ranks and preventing access to data.