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Queen Mary and PACE, just what is their case?

Discussion in 'General ME/CFS News' started by Graham, Aug 14, 2016.

  1. Graham

    Graham Senior Moment

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    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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  2. TiredSam

    TiredSam The wise nematode hibernates

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    Can't open it in word for some reason :(
     
  3. Graham

    Graham Senior Moment

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    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?
     

    Attached Files:

    Last edited: Aug 14, 2016
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  4. worldbackwards

    worldbackwards A unique snowflake

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    To be fair, I can't say I'd hold that against them if it was their reason.
     
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  5. user9876

    user9876 Senior Member

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    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.
     
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  6. TiredSam

    TiredSam The wise nematode hibernates

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    I had unzipped it but still couldn't open it in word. The problem could be at my end. I can read the pdf, thanks.
     
  7. TiredSam

    TiredSam The wise nematode hibernates

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    Love the logic of this from the bottom of p.10:

    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:

    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?

    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?

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

    Sean Senior Member

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    :D
     
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  9. snowathlete

    snowathlete

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    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.
     
  10. Graham

    Graham Senior Moment

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    "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.
     
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  11. Snowdrop

    Snowdrop Rebel without a biscuit

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    :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.
     
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  12. Graham

    Graham Senior Moment

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    Well I haven't made any more requests, so I can only assume that CBT (Comprehensive Baulking Testimonials) has cured me.
     
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  13. halcyon

    halcyon Senior Member

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    If they're going to diagnose us all as obsessives, can we diagnose their egomania? Do they really think we care about them? We want raw data, we want to see the science. It's so cute that they actually think we care about them or their careers.
     
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  14. Esther12

    Esther12 Senior Member

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    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."

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

    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'.

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

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

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

    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?

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

    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).

    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?

    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.

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

    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?

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

    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.

    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?

    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?

    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?

    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?

    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?

    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:


    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:

    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.

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

    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.

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

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

    OT:

    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.
     
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  15. Esther12

    Esther12 Senior Member

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    And this is made all the more annoying because the ICO seemed to fall for it... from their decision:

     
  16. Tom Kindlon

    Tom Kindlon Senior Member

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    For anybody who is not a member of Phoenix Rising, and who therefore can't see this file on Phoenix Rising, I've uploaded it here:
    https://www.mediafire.com/?9d5120lucdj594j
     
  17. TiredSam

    TiredSam The wise nematode hibernates

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    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?
     
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  18. sarah darwins

    sarah darwins I told you I was ill

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    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:

    suggests no awareness of the now numerous criticisms of PACE by medical-scientific heavyweights who could hardly be lumped into this fringe conspiracy theory.
     
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  19. taniaaust1

    taniaaust1 Senior Member

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    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.
     
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  20. user9876

    user9876 Senior Member

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    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.
     
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