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.