A lot of emphasis in the intro was placed on the 'harassment' theme - despite no evidence of anything unreasonable from the person who was appealing the FOI.
They've worked very hard to try to portray criticism of PACE, or requests for information, as innately unreasonable. Looks like this Judge decided to join them in their lazy and self-serving prejudices.
Was the Judge even aware that the researchers are refusing to release the outcome measures they laid out in their own protocol? Or that a trials protocol is used to lay out in advance what data will be released? From what I remember from the earlier judgement, this was a core part of Mr Mitchell's complaint:
The research and its findings had been fully and promptly published in the Lancet with access to the findings fully available to the public. These findings have been subject to an extraordinary level of public scrutiny and in response to public commentary the Lancet had subjected the study to a further review process.
In this case there was an ongoing process of research and it was therefore important to continue to protect the free and frank exchange of views in such studies in order to continue to protect academic freedom. Correspondence from a patient representative group submitted by Queen Mary indicated that publication of minutes would have a negative impact on its willingness to participate in the future in such work
Action for ME screwing patients over again.
15. In particular Queen Mary drew attention to a judicial review heard in the High Court in 2009 in which a challenge was brought against the National Institute for Health and Clinical Excellence in connection with the development of guidelines for the treatment of CFS/ME.
Fraser & Anor, R (on the application of) v National Institute for Health and Clinical Excellence & Ors [2009] EW HC 452 (Admin) (13 March 2009) In an afterword to that ruling Mr Justice Simon noted:-
I've seen the PACE lot try to present these findings as definitive previously, so it must really say what they want. I don't actually know much about this case, as it took place before I was really reading much CFS stuff. Was this a big thing that was a fair representation of the available evidence, or just a couple of patients making a complaint on their own that included some unfounded claims? Also, there are things like the Parliamentary Gibson Enquiry which reached quite different conclusions about concern over links to the insurance industry.
It wouldn't surprise me if a lazy judge had just assumed that the conclusions of this one case were a definitive representation of the state of play around CFS controversies, so as to avoid having to look at, or think seriously about, the complicated and uncertain evidence.
White talks about briefing members of the House of Lords for their PACE debate:
In particular, I had to recently brief several members of the House of Lords so that they might speak in a critical debate about the Pace trial held on 6th February this year (exhibit C)
The abusive e-mails don't seem that abusive to me. Not something I'd send of course, but really, is this any worse than claiming that CFS patient's symptoms are influenced by a desire to maintain the secondary gain that comes with the adoption of the sickness role? Seems less serious, given the different power relationships involved.
25. An examination of the emails attached to his second witness statement reveal the vituperative and abusive way in which some activists behave towards researchers:-
“Has it always been just to cuckold others,
to show perceived superiority, and to keep
a small contingent gainfully employed?
Because not a whit of it has been based on any PROVEN SCIENCE! .
Looks like this bit falls into bigotry, and from what I've seen, a serious misrepresentation of Mr Mitchell's views:
Consideration
27. What is immediately apparent in considering this request for information is the extent to which the request is part of a campaign which has now extended to the use of FOIA as a means of advancing an argument which in essence has roots in clinical medicine and in a black and white view of the mind/ body problem. There is a view among some members of the CFS/ME community that the distressing disorder which they suffer from has a simple and straightforward physical cause which if properly researched will lead to a cure. They view any diversion from that as wasteful and indeed duplicitous.
All too often such requests are likely to be motivated by a desire not to have information but a desire to divert and improperly undermine the research and public ation process – in football terminology– playing the man and not the ball. This is especially true where information is being sought as part of a campaign – it is not sought in an open-minded search for the truth – rather to impose the views and values of the requester on the researcher
Yeah - if only PACE had pre-published some sort of guidance on what they were going to publish, so that they could be held to that, and avoid accusations of spinning data.... like the ruddy protocol!:
35. The second issue relates to the strategy which universities faced with the
likelihood of a high degree of hostile attention in connection
with research (or indeed a high degree of public interest) could adopt
in order to protect the highly valuable time and energy of their researchers while
at the same time giving a high degree of transparency and accountability to what is done. Public authorities have a duty under section 19 of FOIA to adopt, maintain and from time to time review a publication scheme. In this case there has been a very high degree of transparency both in the initial publication of the research protocol and indeed in the exhaustive work of the researchers and the Lancet in publication of the material. However it might well be worth considering at the start of a major project such as this setting out a publication strategy identifying what materials will be produced in the course of the project, which materials will be published and when (this will enable s22 to be considered if FOIA requests are received for such material), and which are unlikely to be published under FOIA as exemptions may be engaged.
While individual publication strategies will be specific to the project,this is an area that would clearly benefit from guidance to Universities by the Commissioner indischarge of his article 13 duties.
The tribunal has no doubt that properly viewed in its context, this request should have been seen as vexatious- it was not a true request for information-rather its function was largely polemical and as such in the light of recent Upper Tribunal judgements might have been more efficiently and effectively handled if treated as vexatious
This is a ruling that seems based on attitude, instinctive deference to authority, and prejudice about CFS patients who want access to information about the efficacy of the treatments available for their condition. It seems devoid of any attempt to grapple with the evidence, of the specific problems with the way in which results from PACE were presented. I had been somewhat impressed by some of the past FOI rulings I had read, but this one does much more to live up to the negative stereotypes of the British Judiciary.