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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. J

    SMILE trial data have been released

    The data are available here: https://www.dropbox.com/s/192q1e38lg4wddq/SMILE%20data.zip?dl=0
  2. J

    Presentation Leiden 15/11/2018 by James Coyne

    A video of the presentation he gave on ME at the end of last year is up on Youtube. https://www.youtube.com/watch?time_continue=5&v=cZvd0Jo0Z_8
  3. J

    Persistent fatigue induced by interferon-alpha: a novel, inflammation-based, proxy model of CFS

    There is an excellent blog post on this paper by @sTeamTraen Here https://steamtraen.blogspot.com/2018/12/have-scientists-found-explanation-for.html
  4. J

    Carmine Pariante's MRC research award-Persistent fatigue induced by interferon-alpha

    Very interesting blog on this paper been done by Nick Brown. https://steamtraen.blogspot.com/2018/12/have-scientists-found-explanation-for.html
  5. J

    TSC and TMG minutes released

    I have now received these minutes. TSC: https://www.dropbox.com/s/1b86k0pvnymko16/TSC.zip?dl=0 TMG: https://www.dropbox.com/s/jhxmivxyn9k8lid/TMG.zip?dl=0 I am tired and have only skimmed through them. Major point is how little there is on the changes in protocol. TSC #8 File 20090429 TSC...
  6. J

    PACE Trial TSC and TMG minutes ordered release

    Information Commissioner Trial Steering Committee Trial Management Group
  7. J

    PACE Trial TSC and TMG minutes ordered release

    Just received decision in the post. Not read it all but ICO has ordered release of TSC and TMG minutes.
  8. J

    PACE trial data

    I have received the decision from the ICO who accept that QMUL do not hold the anonymized data. The decision is here: https://ico.org.uk/media/action-weve-taken/decision-notices/2018/2173169/fs50673373.pdf I am intending to appeal. I have also made a similar request to KCL.
  9. J

    Info obtained using FOI on PACE Trial application for funding in 2002

    I asked them to review their decision and they have now revealed some more information. They are still in discussion about revealing the peer reviewers. Seems AfME wrote a letter in support. And Wessely was a 'collaborator'. Any thoughts on whether it's worth appealing to the ICO for any of...
  10. J

    Clinical and cost-effectiveness of the Lightning Process for chronic fatigue syndrome

    Excellent quotation.
  11. J

    Clinical and cost-effectiveness of the Lightning Process for chronic fatigue syndrome

    Update: I have today received the result of the review undertaken by Bristol about the SMILE trial data.. They still claim an exemption. I'll refer it to the ICO. It usually takes about 4 months to get a decision.
  12. J

    Clinical and cost-effectiveness of the Lightning Process for chronic fatigue syndrome

    I agree I don't think there's ever been any sort of conspiracy.
  13. J

    Woman 'with ME' won world kickboxing champs

    In Times this morning. Posted for information. It is a sympathetic article by Broadbent. https://www.thetimes.co.uk/article/muslim-fighter-with-me-who-left-an-arranged-marriage-to-win-world-title-svxhhzt57
  14. J

    Esther Crawley TEDxBristol Disrupting Your View Of ME

    Yes, I still have access to one, but it's no longer up on Yahoo.
  15. J

    Esther Crawley TEDxBristol Disrupting Your View Of ME

    I had this speech on my Yahoo account, but it's been deleted and I've been sent a warning for breach of copyright.
  16. J

    Documents from the SMILE trial

    University of Bristol has created a website with the documents from the SMILE trial. http://www.bristol.ac.uk/ccah/research/childdevelopmentdisability/chronic-fatigue/smile/smile-documents/ Note that does not include the data, of course.
  17. J

    25 Oct E Crawley speaking at Better Science Better Data event......

    Yes, it was. There was never any letter like that. The words are supposed to have been said to Wessely over the phone.
  18. J

    25 Oct E Crawley speaking at Better Science Better Data event......

    In her presentation Crawley used a slide of the front page of the Sunday Times Magazine. The image belongs to Mat Gill. Gill has been contacted (not by me) about its use. He confirmed that he did give Crawley permission to use the image, but he 'was a bit concerned about how she presented the...
  19. J

    25 Oct E Crawley speaking at Better Science Better Data event......

    Videos now up on Youtube. 3 parts first one here
  20. J

    25 Oct E Crawley speaking at Better Science Better Data event......

    I tried the Windows 10 one yesterday. Brilliant. Works completely. Thanks for that, Yogi.
  21. J

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    In case anyone is wondering about the data: I should have received a response last week. I chased up Uni of Bristol and got no reply. I tried again today and said if I didn't get a response by end of office hours I'd refer to the ICO. I got a reply including this statement: I apologise for the...
  22. J

    Cognitive Behavioural Responses Questionnaire

    This uses PACE. I haven't read it yet. http://journals.lww.com/psychosomaticmedicine/Abstract/publishahead/Psychometric_properties_and_factor_structure_of_a.98774.aspx Psychometric properties and factor structure of a shortened version of the Cognitive Behavioural Responses Questionnaire...
  23. J

    RPscyh apology for aversion therapy

    Irony is that that article is written by Strudwick who has written of how he was treated by Lightning Process 'for ME'. https://www.thetimes.co.uk/article/me-lightning-cure-or-a-flash-in-the-pan-87cq3kktkwn
  24. J

    Two good pieces on ME

    Can't see reference to these anywhere on here. Article in Medical Independent (Ireland), quoting book by @velogubbed http://www.medicalindependent.ie/100315/is_it_just_me_or_is_this_a_real_disease Blog by Dariusz Galasiński: http://dariuszgalasinski.com/2017/10/15/normalising/
  25. J

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    This is the paper. http://adc.bmj.com/content/early/2017/09/21/archdischild-2017-313375 The original primary outcome was school attendance. Check out Table 3 'secondary outcomes': 2.6 (SMC) 3.2 (SMC + LP) at 6 months. Then look at school attendance N for 12 months for SMC+LP is 34 (51 in group...
  26. J

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    Yes, I have asked for the data. In fact, I had asked before the trial was published, and then requested again the day the study became available. I imagine they'll try to find some exemption. But we'll see.
  27. J

    Info obtained using FOI on PACE Trial application for funding in 2002

    Though it does state AfME were paid a consultancy fee, which I had not known. Edit: or at least such a fee was budgeted for.
  28. J

    Clinical and cost-effectiveness of the Lightning Process for chronic fatigue syndrome

    I don't. I have been digging around a little today but not found anything new. The protocol for the main study says: 'Ethical review A favourable ethical opinion was given on 8 September 2010 (reference 10/H0206/32) by South West 2 Local Research Ethics Committee.' But the 08/09/2010 ethical...
  29. J

    Clinical and cost-effectiveness of the Lightning Process for chronic fatigue syndrome

    I wrestled with this question myself and then like you decided that the feasibility study became the first part of the full study, ie the participants and results of the feasibility study were added to the new participants to make the complete trial. I noticed the acceptance rate is about the...
  30. J

    Clinical and cost-effectiveness of the Lightning Process for chronic fatigue syndrome

    Yes, that's correct. I had already made one and continued the conversations I'd been having with their legal department to make a fresh request, addressing their previous claims of exemption.