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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. S

    PACE raw data available

    Notes on Chalder fatigue questionnaire scoring (These figures need to be checked; I also plead guilty to utterly shameless self-plagiarism.) Of the 177 participants who met the post-hoc recovery threshold for fatigue at week 52 (CFQ Likert <= 18), 45 had a CFQ bimodal score >= 6 making them...
  2. S

    PACE raw data available

    I get the same values @wdb.
  3. S

    PACE raw data available

    I'll offer this as a tentative observation (because of uncertainty about the application of the Oxford criteria at 52 weeks), but it appears that the post-hoc changes to the recovery thresholds allowed one participant to "recover" having walked only 206 metres in six minutes, which is about...
  4. S

    Alem Matthees analyses on released PACE data blast "recovery" claims - huge damage to PACE

    Huge thank you to everyone involved in this. No wonder PDW retired .... For anyone trying to replicate the analysis I thought I'd point out that the hash value for the excel file given in the accompanying notes is actually a SHA-1 checksum and not a SHA-256 value as stated.
  5. S

    The PACE data have been released (9 Sept 2016)

    I'd love to hear a lawyer's take on this, but from what I've read on the web the requested data falls under the purview of the rules relating to datasets which appears to place a responsibility on QMUL to actively publish data that they provide under the FOIA. They can refuse to publish if it...
  6. S

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

    To continue @Bob 's riff, we can see from the Lancet / Lancet Psychiatry reports in 2011 and 2015 that "6-min walking distances ... were no different after CBT compared with APT and SMC" and also "[t]here was little evidence of differences in outcomes between the randomised treatment groups at...
  7. S

    Arthiritis UK (ARUK) funds QMUL re PACE trial with £1m

    The language used to describe the interventions is awfully similar to other psycho-social fatigue studies. It also refers to "international leaders in the field" which made me think they could be liaising with PDW et al. But yeah, it could just be a cock-up.
  8. S

    Arthiritis UK (ARUK) funds QMUL re PACE trial with £1m

    https://www.abdn.ac.uk/iahs/documents/2016_Newsletter.pdf Arthritis Research UK: “The LIFT Trial – Lessening the Impact of Fatigue: Therapies for inflammatory rheumatic diseases”. £750,000 June 2016 – May 2020. Fatigue is pervasive, disabling and challenging to manage across all inflammatory...
  9. S

    FINE Trial team restore raw data file!

    I get the same sha256 checksum as you from the STATA (.dta) file. As far as I can tell there was only ever one file.
  10. S

    FINE Trial team restore raw data file!

    I haven't deleted the post, A.B., but I could have made a mistake when calculating the checksum. The file I downloaded in December and the one I downloaded yesterday are both 41KB in size. How large is the file you downloaded?
  11. S

    FINE Trial team remove raw data file: pressure from PACE Trial team?

    As best as I can tell the dataset hasn't been changed. I compared the file I downloaded last year with one I downloaded tonight and they both have the same SHA-1 hash digest of 1ead6b2d5b4aa8ad69a951dbaf6bd9f499ec21ea which means they're identical (assuming I've done things correctly).
  12. S

    FINE Trial team remove raw data file: pressure from PACE Trial team?

    This is the download URL for the dataset, Denise. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4685991/bin/pone.0144623.s002.dta Contrary to what Wearden et al wrote, the data were never removed from the web at any point.
  13. S

    New paper on FINE in PLOS: "Therapist Effects and the Impact of Early Therapeutic Alliance"

    PACE trial post-hoc recovery thresholds increase the recovery rate by a factor of 6. 18 FINE participants met PACE trial post-hoc recovery thresholds at week 20 (SF36 ≥ 60 and CFQ likert ≤ 18) compared to only 3 participants who met the original recovery thresholds (SF36 ≥ 85 and CFQ bimodal ≤...
  14. S

    Coyne - What it takes for Queen Mary to declare a request for scientific data “vexatious”

    Hi Mark, Concealing information is a criminal offence under Section 77 of the Freedom of Information Act. I've complained to the ICO in the past about a public body, alleging that a person had deliberately withheld information from me, and because I was able to make a persuasive case that this...
  15. S

    Trial by error, Continued: PACE Team’s Work for Insurance Companies Is “Not Related” to PACE. Really

    And not just Peter White. During the period when PACE was being planned and executed, Michael Sharpe was involved with Unum Provident, Reassure, Windsor Life, Aegon UK, and others.
  16. S

    Information Commissioner's Office orders release of PACE trial data

    I think one could argue that the therapists in the CBT arm of the trial were trained to actively encourage a placebo response in participants. This is from page 34 of their manual. """ Encouraging optimism Although it is important that you are realistic about the treatment targets that you...
  17. S

    Realistically there is no cure?

    Discovery of quantum vibrations in 'microtubules' inside brain neurons supports controversial theory of consciousness Summary: A review and update of a controversial 20-year-old theory of consciousness claims that consciousness derives from deeper level, finer scale activities inside brain...
  18. S

    ME/CFS meeting at the Royal Society of Medicine - March 18th 2015

    I respectfully disagree that further analysis of CBT trials has no value. Even if the results are uninterpretable from a scientific or impartial perspective, that has not prevented their results from being interpreted and for that interpretation becoming a dogma that most doctors believe (even...
  19. S

    Study points to IVIG as treatment for "Depression"

    The full paper is available to download from ResearchGate at this url.
  20. S

    Peter Denton White/Queen Mary, University of London again refuse to release data from £5m PACE Trial

    White et al wrote that "The data has been entered and checked during the course of the trial in a customised Microsoft Access [78] database. Once the database is locked, the data will be transferred into Stata". (1) The FOIA stipulates that public bodies should "provide advice and assistance...
  21. S

    Bad Science thread

    I rather liked (in an ironic sense) TallPoppy's confused defence of the reasonableness of White's claims because it made apparent to me a contradiction I hadn't noticed before. The authors' reply to the Psy Med letters states: "three times as many (22%) recovered after receiving CBT or GET...
  22. S

    Invest in ME/Prof Jonathan Edwards statement on UK Rituximab trial, 30 July

    From a brief skim of Google's patent search it looks like Mella and Fluge might already have such a patent.
  23. S

    User's letter and Martin Bland

    I was skimming Peter White's 2005 paper on cytokines and found that it included SF-36 PF and Chalder Fatigue Questionnaire data for the participants and controls (who were healthy, age and sex matched, and sedentary.) It's striking how little variance there is in the controls' scores and...
  24. S

    User's letter and Martin Bland

    <!(curses!)/> Everyone Working Age (WA) WA and no long term illness % population < 85 29% 18% 8% % population < 65 16% 9% 2% % population < 60 15% 8% 2% Median...
  25. S

    User's letter and Martin Bland

    Looking at User's figures, it seems that the mean and s.d. for the whole population are the same as those quoted by White in the Lancet (ie. approx 84 and 24 respectively)? However, White's claim that half the working age population have SF36 PF scores less than 85 is categorically wrong, and...
  26. S

    User's letter and Martin Bland

    I suggested in an earlier post that approaching the statistician Martin Bland might help User's letter to get the attention it deserves. Yesterday I found out that a friend of mine actually knows him -- not terrribly well, but well enough to pick up the phone and provide some kind of...
  27. S

    Letter looking at SF36 results and Bowlings data

    I'm a little wary of going public before giving White, the trial statisticians, and Psy Med the right of reply, because the critique, whilst novel and important, may become lost amidst the other critiques (which are mounting up now). I think this is a particular problem because of the highly...
  28. S

    'Recovery' from chronic fatigue syndrome after treatments given in the PACE trial

    Hi Fire, Rehabilitation is in fact the word Peter White uses, only it isn't rehabilitaion as I understand it, or as you describe it. Making adjustments, gaining acceptance and learning to live with the illness have no place in his kind of rehabilitation, and in fact, he considers such...
  29. S

    'Recovery' from chronic fatigue syndrome after treatments given in the PACE trial

    Hi Bob, Looking at Psy Med 2013, White et al write that, for each of the three diagnostic criteria used in the trial - Oxford, London and CDC - all required the presence of fatigue (or 'symptoms' in the case of London) for six months. However, the protocol's version of the CDC criteria asks...
  30. S

    'Recovery' from chronic fatigue syndrome after treatments given in the PACE trial

    According to the trial's protocol, to not meet the Oxford Criteria you would have to answer 'no' to this question: "Have you had your fatigue for the last 6 months, during which it was present for more than half of the time?" For lots of reasons, many of which have already been discussed...