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Appeal to the FTT for information from QMUL rejected

Discussion in 'PsychoSocial ME/CFS News' started by JohnTheJack, Apr 4, 2019.

  1. JohnTheJack

    JohnTheJack Moderator Staff Member

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  2. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    The like is for your efforts not the tribunal decision of course.

    they continue to rely on the deceit that all scientists and experts in clinical trials consider the trial a rousing success.

    And with regards to our doggedness as a community to dismantle bad science the tribunal did not take into account the power imbalance between very sick people who can't just get on with their life and the psychosocial brigade who can take a holiday if they feel hard done by.
     
  3. rvallee

    rvallee Senior Member (Voting Rights)

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    It's fairly noticeable that the premise that objections to this research are irrational and unfounded is unconditionally assumed to be indisputable fact, that the "campaign" is meant to personally annoy and discredit, rather than a legitimate effort for transparency about controversial research.

    Which is odd considering how much emphasis there is on how the requests have been proper, polite and well-argued (sorry, I meant "obsessive"). There is considerable emphasis about how John acted alone precisely for that purpose, and yet QMUL makes that argument nonetheless. Shows a contempt for their own arguments, frankly, that they do not make them in good faith.

    It's seriously bizarre to argue that a request for information can be deemed vexatious on grounds that it is too well-prepared and documented. To accept this argument requires to accept the unreliable assumption that none of the requests have a legitimate purpose. Reminds me of GP comments about someone "presenting too well" to be sick. Very fallacious.

    Can't help but laugh at this given Esther Crawley's BS about her own work being all about "daring to disrupt". Disruption is good when we do it. It's bad when you do it. No hypocrisy, no, we're eminent.

    The decades-long sabotage of a severe disease has resulted in quite a bit of disruption. Except instead of "annoyance and discomfort", it's death and suffering. Equal problems, I guess, when someone "dares to disrupt".

    Hmmm. Absurdly indeed.

    This framing of personal grievances is seriously unprofessional. Extremely bad faith and unethical.

    Wow. This is weak. The burden is entirely self-inflicted. There does not appear to be consideration for the burden of someone suffering from a serious chronic disease having to demand basic accountability and transparency. No, QMUL is a poor burdened organization while John is determined and resourceful. OK.

    Too much burden on QMUL. Aww shucks. I guess people will just go on suffering needlessly, then. Hopefully they don't deem that suffering vexatious.

    This will not age well.

    Ah. There it is. Just a few sentences later. Did not age well at all.

    I guess that does not apply to victims of flawed research.

    This is highly speculative and a weak argument considering that PACE researchers have themselves alleged to have documented those and consulted with police and their employer. Odd.

    Wow. They employ psychics that can tell whether analysis would show a particular outcome?

    The public good has not been served by this shameful decision. Stellar work, John. It's disappointing but it will look horrible in hindsight.
     
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  4. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Ironically I think we have reached the stage when more data will not change the flavour. The PACE authors have actually claimed now that they deliberately fiddled the endpoints to suit their expectations. The ship has sunk without trace.
     
  5. strategist

    strategist Senior Member (Voting Rights)

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    Data related to safety could change the flavour.
     
  6. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  7. Esther12

    Esther12 Senior Member (Voting Rights)

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    Sounds like there was so much annoying stuff in the QMUL submission. I wonder if they have student union disability activists who would be interested in the way they're behaving? There are bits that left me fuming. I think I'll restrain from commenting on that for now. I'm a bit flummoxed by QMUL's FOI responses. Does anyone there actually understand the problems with PACE? I got the impression White was the only one who ever really did, but surely by this point they've realised that critics are doing a decent job of convincing other academics that there are serious problems, and so trying to just dismiss with prejudice the patients who had long been raising concerns about this work is probably a bit of an unpleasant thing to do. Is there no-one at that institution providing any sort of ethical over-sight?

    It seems like the ruling recognises that the request is not really 'vexatious' on the part of Peters, as that word is conventionally understood. It felt like they'd have rather ruled that the cost of completing the request was too high, but they didn't really seem to have any good reason for thinking that this would be true. I don't know how difficult it would have been for QMUL to provide the info requested, as that would depend on how they store such things, but it seems like it could potentially have been either very easy or very difficult, and they didn't seem to argue that the cost would be too high.

    It's annoying that the criteria used for assessing whether a request is 'vexatious' does not seem to include an assessment of whether the complaints of strain being made by those at the public body are at least partly a result of their own bad behaviour. It sounded as if John had made this point in his submission, but it seems as if the criteria used was based on case-law from cases where this wasn't an issue - maybe the point could be argued that there is such an unusual history here that unusual considerations should be made, outside of what has been done before? Any law people here know if that's plausible?

    I've got some sympathy for the view that the information requested would not do much to settle the extent to which the White and colleagues have attempted to exaggerate concerns about harassment in order to try to discredit all critics or their work. The potential justifications made by the judge could be used by QMUL - nonetheless, if these came on top of the evidence we already have which indicates a pattern of exaggeration and misleading claims, that would still be of some interest and value.

    I can see that this verdict was a judgement call on the basis of some subjective matters but I felt that it rather downplayed the potential benefit of the release of information and assumed that it would be more difficult for QMUL to release the info than they had shown it to be.

    A separate concern that I have about FOIs relating to the harassment narrative is that it would be quite easy for institutions to have prepared for this and created a paper-trail that makes it seem as if they have to have weekly meetings on protecting researchers from CFS terrorists, with regular advice from the police, etc. That QMUL have fought against this FOI makes it seem unlikely that they put on that sort of show, but others could have.

    Personally, I think that we're best off just accepting that they can play this card to score some PR points, and our best response is to just point out that it is not acceptable to try to dismiss all patients concerns just because some may have behaved badly. Sadly, when large parts of the UK media seems happy to try to stigmatise us all this is a fairly weak response, but I still think it's the best we have.

    The ruling says this, which seems to indicate a desire to avoid the judgement call made in this case being used to justify dismissing other FOI requests from John:

    Thanks for all your work on this John - sorry to see that it went against you in the end.

    There were some 'psychological vs biological' bits that I have to pull out just because there's nothing more annoying to me.

    I don't know exactly what was said in the submission, but that sounds like a confused point to me - maybe the Judge misunderstood? All health problems will have an underlying pathology and the work from White and colleagues doesn't do anything to show that CFS is a unique condition lacking in an underlying pathology.

    Whatever was said it seems that it did serve to feed in to these sorts of (openly admitted to be) crude summaries that make suffers sounds unreasonable and stupid:

    Health problems classed as psychological will still have an underlying pathology, but the important point is that those whose health problems have been classed as psychological should still be able to rely on competently conducted research and reasonably presented results. However, classing peoples' health problems as 'psychological' shouldn't be used to justify misleading them with 'positive' expectations and 'reassuring' information - and this does seem to be what happens all too often. The problem is not with whether or not there's an underlying pathology, but whether patients are being provided with accurate information and treated fairly.

    There's also this:

    I think in the thread about that SMILE ruling John said that the Judge had misunderstood his concerns, but again, SMILE doesn't show that there's a psychological component to the condition, and it wouldn't be a problem if it did. Phil Parker insists the Lightning Process treats CFS as a purely neurological condition, and has claimed LP can treat conditions like MS too. Although he has also claimed to be able to enter other peoples bodies and use his magical healing powers on them, so maybe he isn't the most reliable source.
     
    Last edited: Apr 6, 2019
  8. rvallee

    rvallee Senior Member (Voting Rights)

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    The way I understand it, it argues both. It recognizes that it is not vexatious but that allowing it would likely lead to more demands, which is framed as vexatious, rather than what is expected to happen when there are serious problems that people desperately want to bury.

    Which makes as much sense as not authorizing a search warrant because bad stuff could be found which could lead to more search warrants. All of which makes sense given the enormous problems and impact of their research, but QMUL's framing is taken at face value, that there is no legitimate reason other than harassment and personal attacks, even though the judgment recognizes this is not the case.

    The judgment is seriously self-contradictory. It seems to have boiled down to eminence and the fact that it's hard to say if there's anything improper without looking, but looking is not authorized so it's impossible to tell. Then the oddly psychic argument made that there would likely be nothing to be found, which is entirely speculative.

    So it's not vexatious, but it could become, by way of using psychic powers (or rather making a personal judgment despite lacking relevant information). It's a really odd judgment that accepts wild assumptions and gives the benefit of the doubt despite ample prior behavior that makes it clear QMUL and PACE researchers are arguing in bad faith.

    Really seems like eminence won over evidence.
     
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  9. ladycatlover

    ladycatlover Moderator Staff Member

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    :rofl: :rofl: :rofl: :rofl: :rofl:

    @Esther12, that has to be one of the understatements of the year! :rofl: Thanks for the much needed laugh! :)
     
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  10. Esther12

    Esther12 Senior Member (Voting Rights)

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    I was just thinking about the concern raised about the number of FOI requests - the thing is, it's not likely patients concerned about problems with QMUL's actions/the PACE trial/etc have been trained in how to perfectly phrase FOI requests to get the right info. Also, as we're not some phalanx like hive-mind, there will be over-lapping requests, repeat requests, people who've not learned from past requests, etc. I've seen some really badly phrased FOI requests on whatdotheyknow that make me cringe... but it seems unfair to use those problems to make it more difficult for other individuals to secure the release of info, particularly given that there are clear problems with the way QMUL has attempted to prevent the release of valuable information.

    I can see that there's a legitimate reason to want to protect a public body from being over-run with FOI requests, but that needs to be balanced against the fact that public bodies can behave badly in a way which will generate a lot more work for themselves when they try to prevent the release of info.

    This is a more general point than one related to this particular request. I do think that the judge made some fair points about the difficulty of interpreting the information requested, and that does limit its value.

    I wasn't so critical when I read through, but I see your points. I don't really know how much judgements about whether a request is 'vexatious' need to be assessed according to the standards laid out in earlier case-law, even when the current case brings about a number of unique challenges. It does seem that currently judgements about what is 'vexatious' will often rely on unverifiable assumptions. This is something that often seems to happen with judgements about 'vexatiousness'. I think that some of that is a problem with the FOIA (and the UK's legal culture) more than this specific judgement.

    Having said that, I do still have a concern that judgements related to CFS seem more willing to class requests as vexatious on relatively weak grounds than is often the case. I'd need to read more borderline vexatious cases to know if that really is a problem. It did seem like this ruling was written in a way which emphasised that is was a borderline case. I feel like I'd like to have more knowledge of other cases to be able to really assess this one.
     
  11. JohnTheJack

    JohnTheJack Moderator Staff Member

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    Just to clarify, this decision was not about the data.

    QMUL has already agreed to try to provide the trial data I requested.

    This was about some information relating to harassment I asked for.
     
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  12. Mithriel

    Mithriel Senior Member (Voting Rights)

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    The PACE trial did assume there was no underlying pathology, that is why they said that no matter how bad you felt it was safe to keep on exercising.

    Wessley's statements about patients misconstruing normal physiological feelings also assumes no underlying pathology.
     
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  13. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Yes, I get that John, just a random thought!
     
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  14. JohnTheJack

    JohnTheJack Moderator Staff Member

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    I view this decision more positively than others.

    I think it's important to read it in the context of the notice by the ICO which upheld QMUL's exemption, and was highly damaging, and that of previous decisions by the Tribunal.

    I also think it should be read as a legal document which means that it has to be seen to be fair to all parties and that it will use language in specific ways.

    There are things I don't like, of course:

    I didn't get all the information I requested.

    They do shoot across my bows: they think I am making rather a lot of requests and that I should be careful not to overdo it.

    They didn't grasp the importance of the expenditure and didn't appreciate I only asked about the VAT because when I posted the cost on my blog there was a discussion across social media as to whether VAT had been paid or not. I really was only asking for a clarification and not 'how much VAT had been paid'.

    I have ME, not CFS.

    Despite my specifically avoiding presenting the dispute as one about 'psychological/physiological' , that is how it has been described in the judgment.
    (Aside: that may in itself be interesting as clearly people understand it that way even when we purposely do not describe it as such.)

    But there are many things I do like:

    As they point out, I did get a significant amount of the information I requested (the FOI numbers).

    They accept that I am acting in good faith.

    They have specifically left the door open to me to make further requests, if I can justify the value of them.

    They have made it very hard for QMUL to use the vexatious submission they've been using for some time against requesters they don't like. Much of the stuff about campaigning has effectively been dismissed as irrelevant.

    The Tribunal has recognized the dispute about the illness and the trial is a genuine one.

    In contrast to Mitchell, they recognize that scientific disputes are not gentlemanly affairs conducted by superior beings. They even mention the pharma stuff, not a comparison I made.

    Some of the comments (eg the absurdity of the Iraq comparison) are scornful. They have even stated clearly they think the stories of harassment have been purposely used to discredit critics (ie us) and mention the SMC's role.

    They criticize both QMUL and the IC for their handling of the request and complaint.

    They have negated the damaging IC Decision Notice.

    The Tribunal is not binding, but they have extended the process of consideration of complaints by saying that I should have had a right to respond to QMUL's submission. That is potentially of very wide and considerable significance.

    I am sufficiently vain that I rather liked their compliments.


    I would say, though, that despite what they say, I think that most of the information has now been obtained and this helpful decision has come rather late for us.

    I would also add that while I wouldn't agree with all the comments on the requests and harassment, I think there are some fair comments.
     
  15. JohnTheJack

    JohnTheJack Moderator Staff Member

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    Hehe. Yes, I imagined you had, but in case anyone saw 22 pages of a PDF and thought 'too much text' and not read it through.
     
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  16. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I have admit not getting to the 22nd page.
     
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  17. JohnTheJack

    JohnTheJack Moderator Staff Member

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    Hehe. I'm not altogether surprised to hear some may not have managed every word.
     
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  18. Esther12

    Esther12 Senior Member (Voting Rights)

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    Thank John. Not sure I read that. I've not been keeping up on recent rulings like I used to try to. That context is important and I should probably re-read the ruling in light of that.

    I've had this happen so many times. When talking to someone new about these issues I will now try to take the time to explicitly explain how that's a common misunderstanding which does not reflect my views. It's frustrating.

    Thanks for all of the work I'm sure you had to put into this.

    That's not exactly what they said, and even if they did that wouldn't require them to assume that there was no underlying pathology.
     
  19. rvallee

    rvallee Senior Member (Voting Rights)

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    That's what puzzles me the most. The tribunal clearly recognizes your effort was legitimate, well-documented and in good faith while making a pretty good case that QMUL took the opposite approach. Their arguments are barely a notch down from the earlier debunked claims of borderline psychopaths. It mostly seems to boil down to burden, but only theirs, and there is a lot of speculation into justifying it, especially an assumed futility.

    It does bolster once more the case that their claims of harassment are exaggerated, which the tribunal notes and yet somehow can't really bring itself to take into account as lowering the credibility of obvious bad faith claims. It's an nth iteration of crying wolf, just not the last one yet.

    Classic Picard: It is possible to commit no mistakes and still lose. That is not a weakness. That is life.
     
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  20. rvallee

    rvallee Senior Member (Voting Rights)

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    The models have no mention of any pathology and describe an assumed, vague behavioral loop. They don't say it explicitly, they just never mention any pathology. That's kind of the same in the end, though. It's not necessary to explicitly use a slur to be racist or sexist.
     

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