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  1. AR68

    Interesting study on how long-term exhaustion has been discussed in medical literature 1860-present day

    What's being released at the moment is a selection of what we have. It is deliberately *not* exhaustive. It hopefully gives people time to piece together the basics. I have also thrown in one or two bits of incidental information and pointers to what we have and will talk about in the future.
  2. AR68

    Interesting study on how long-term exhaustion has been discussed in medical literature 1860-present day

    By the way there is a Twitter account (curated by me) which publishes newspaper headlines of the Royal Free Hospital outbreak 65 years to the day when those headlines and stories were printed. It also (from time to time) publishes snippets of other articles and documents relating to the...
  3. AR68

    PACE trial funding: FoI requests

    So do I. We might be in the amazing situation of believing QMUL figures when they say that they received £1.6m further from the DoH.
  4. AR68

    PACE trial funding: FoI requests

    Thanks for the reply. However there's one or two points. Didn't the CSO money get paid to the MRC therefore the £250,000 which you're quoting (which I assume is from the CSO) is lumped in with the c.£2.8m from the MRC? Unless you're suggesting that the DWP added more funds than we're aware of...
  5. AR68

    PACE trial funding: FoI requests

    OK, here's an update: I asked the Department of Health about the QMUL claim that the DoH contributed an extra £1.6m in funding to the PACE trial. Today the DoH gave me a reply. This is 'the bottom line' from them: "In addition there has been no further funding to this project or any other...
  6. AR68

    PACE trial funding: FoI requests

    I've never seen anywhere near £2m mentioned in regards to the PACE trial. What prompted me to put in the FoIs were that when Carol Monaghan referred to the trial as being funded by the DWP in the Houses of Parliament, Caroline Dinenage (answering) clarified by stating that the DWP funded part...
  7. AR68

    PACE trial funding: FoI requests

    Well, I don't know. Given that there appears to be an undisclosed payment from the DoH and QMUL, despite being handed millions for carrying out work relatively recently, are unable to provide me with a final cost for the trial, you could be forgiven for thinking there is some ambiguity in the...
  8. AR68

    PACE trial funding: FoI requests

    Hello, I recently placed a number of Freedom of Information requests with the funders of the PACE trial, named on the QMUL website. All the funders replied to my requests. All four named funders are below, with the donations they disclosed to me: The Department of Health (and Social Care)...
  9. AR68

    Esther Crawley TEDxBristol Disrupting Your View Of ME

    I still have not received a reply, over Twitter, from TedX Bristol. I don't expect one but it will underline (to me) that they appear to be unaccountable and are merely interested in being 'controversial' for the sake of it. I will pursue this.
  10. AR68

    Esther Crawley TEDxBristol Disrupting Your View Of ME

    I would very much like to know whether you receive an answer to this or not. I have tweeted @TedXBristol more than once recently to point out the misuse of an image by Esther Crawley and to request contact details for someone to complain to. TXB have, as yet, failed to reply and I'm not...
  11. AR68

    Crawley: How to deal with anti-science BRS2017

    No petitions. This needs to be looked into legally.
  12. AR68

    Crawley: How to deal with anti-science BRS2017

    I warned the poster about the questionable statements she was making and the comments from Kennedy re last year's tribunal judgement, pointing out (yet again) that I had attended it, thus hearing evidence for myself.
  13. AR68

    MUS, PPS services and IAPT integration into NHS primary care - what's happening across the UK?

    Sorry but I have to disagree. I'm fed up of letters and petitions. The brazenness of, for the want of a much better word, the 'establishment' was very evident during the PACE FoI rejections and was seen by me, first hand, at the tribunal. The English are far too polite sometimes. Having said...
  14. AR68

    David Tuller: 'Trial by error continued: the real data'

    Just a reminder that an anagram of that unnamed 'Sir' is "Some sly swine"....
  15. AR68

    "News" 8 Sep 2016: PACE trial team analyse main outcome measures according to the original protocol

    I didn't think they would appeal but at the risk of being a party pooper, they've not actually said that they won't be appealing (although reading between lines it's highly unlikely that they will take this any further) but the phrase "certain PACE trial data" sticks in my mind. Given that...
  16. AR68

    Tribunal orders QMUL to release anonymised PACE data 16 Aug 2016

    Surely the reasoning is speculation until we get the *actual* reasoning? Seems rather too definitive at the moment.
  17. AR68

    IACFSME 2016 conference agenda is up

    The MEA had someone at the tribunal. AfME did not.
  18. AR68

    List of media stories on tribunal PACE data release ruling

    I'd have preferred it if the BMJ had put the JE quote about alleged behaviour of patients in some context by pointing out that the judgment criticised the evidence given regarding patients.
  19. AR68

    Horrifying article in Sunday Times

    I was contacted, out of the blue, by the journalist in November 2012 for this article. I knew where this was going therefore I ignored the request. Ultimately he interviewed LS. This is part of what MH sent to me:
  20. AR68

    Tribunal orders QMUL to release anonymised PACE data 16 Aug 2016

  21. AR68

    Tribunal orders QMUL to release anonymised PACE data 16 Aug 2016

    Amazingly, I've managed to miss the 'grossly' in "grossly exaggerated" when I've been referring to this. Think about that phrase. Just think about it.
  22. AR68

    Tribunal orders QMUL to release anonymised PACE data 16 Aug 2016

    Chalder came out with an aside whilst giving evidence about the gravitas of Coyne being involved in calls for an FOI and also said that any release of data wouldn't necessarily help the debate due to some people having 'belief'. As I've said before, we are being watched. That's not being...
  23. AR68

    Tribunal orders QMUL to release anonymised PACE data 16 Aug 2016

    I don't think they'll appeal. Doesn't mean to say they won't but they are running out of avenues and are entering a cul-de-sac. They've spent a sackload of money for what? A Streisand Effect. What they may well do (and are beginning to do) is drag their heels like a naughty petulant schoolboy...
  24. AR68

    Tribunal orders QMUL to release anonymised PACE data 16 Aug 2016

    May I also suggest that the sheer willingness to spend a quarter of a million on an appeal, QC etc and then to mention, in the tribunal, that the likes of PR and Twitter were monitored for comments could be seen as intimidatory?
  25. AR68

    Tribunal orders QMUL to release anonymised PACE data 16 Aug 2016

    'Justice delayed is justice denied'.
  26. AR68

    Tribunal orders QMUL to release anonymised PACE data 16 Aug 2016

    Maybe others think the same thing but I'd suggest that there is, on occasion, a certain amount of goading on the part of some prominent people in the 'CFS' field - a bit like trying to get someone sent off on a football pitch. If you tell someone enough that they are something that they patently...
  27. AR68

    Tribunal orders QMUL to release anonymised PACE data 16 Aug 2016

    Going back to your post here, I'd just like to say something about the reporting (or not) of this case. As you know, we were told not to take "verbatim" notes otherwise we'd be 'done' for contempt of court. Also as you know, very little about the case made it online between the hearing and the...
  28. AR68

    Tribunal orders QMUL to release anonymised PACE data 16 Aug 2016

    Chalder talked about places like PR and campaigns mounted to ruin the trial. She did mention possible attacks on researchers. The death threat was brought up. She said she felt intimidated by the incident a week or so earlier. Can't really add too much more as the already sparse notes were...
  29. AR68

    Tribunal orders QMUL to release anonymised PACE data 16 Aug 2016

    Given that the case was all about freedom of information, his role in assessing risk involved in that was key. Presumably QMUL would have been aware in some way of what his evidence was going to consist of (if any legal people would like to clarify the status of that...?!) therefore, arguably...
  30. AR68

    Tribunal orders QMUL to release anonymised PACE data 16 Aug 2016