• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Search results

  1. seaturtle

    Comments submitted to the 2016 Cochrane Review of Exercise Therapy for CFS

    Thank you, @JohnCB :thumbsup: I totally agree!
  2. seaturtle

    Comments submitted to the 2016 Cochrane Review of Exercise Therapy for CFS

    Cochrane have now published the authors' responses to my first two letters. Cochrane's new publication (version 5)... View in Browser: http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD003200.pub5/full PDF: http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD003200.pub5/pdf See pages 120...
  3. seaturtle

    Comments submitted to the 2016 Cochrane Review of Exercise Therapy for CFS

    BTW, in case anyone wasn't aware, they did provide a (totally underwhelming) reason for the change to the protocol: "We realise that the standardised mean difference (SMD) is much more difficult to conceptualise and interpret than the normal mean difference (MD) [...]". This really isn't an...
  4. seaturtle

    Comments submitted to the 2016 Cochrane Review of Exercise Therapy for CFS

    @Simon, thanks for that very helpful explanation of the issues. I agree with everything you've said.
  5. seaturtle

    Comments submitted to the 2016 Cochrane Review of Exercise Therapy for CFS

    Of course, I'm assuming that my interpretation of the review is correct. It's possible that I've made some errors, but I've re-checked my work repeatedly. Some other reliable people have also checked all the details that I've discussed and highlighted, and no one has spotted any errors so far.
  6. seaturtle

    Comments submitted to the 2016 Cochrane Review of Exercise Therapy for CFS

    Yes, that's how I interpret the review. The unplanned changes to the original analysis plan only affects fatigue, but fatigue is the primary outcome so it's the main focus of the review. But, even with the publication of the post-hoc analysis for fatigue, it doesn't change the fact that the...
  7. seaturtle

    Comments submitted to the 2016 Cochrane Review of Exercise Therapy for CFS

    A preliminary summary (of sorts) of the main issues ... I might try to refine this at a later date to make it more accessible... This is perhaps the most substantial issue that I have addressed, and it's related to the primary outcome switching in the review. It's an issue that our community...
  8. seaturtle

    Comments submitted to the 2016 Cochrane Review of Exercise Therapy for CFS

    BTW, I posted these today because I'm expecting a formal response to the first two submissions quite soon. I've no idea what the response will be. I'll keep you all posted.
  9. seaturtle

    Comments submitted to the 2016 Cochrane Review of Exercise Therapy for CFS

    They tend to publish the letters that they receive. The way they seem to publish them is to republish the entire review, as a new version (the current version is version 4) which may include any amendments or corrections that they wish to include, with the letters included in the full PDF...
  10. seaturtle

    Comments submitted to the 2016 Cochrane Review of Exercise Therapy for CFS

    These are good questions! 1. This is the Cochrane review for exercise therapy that's already been published. 2. They seem to publish and respond to most letters, so I would expect these to be published with an appropriate response. They can amend their review and easily republish it, if they...
  11. seaturtle

    Comments submitted to the 2016 Cochrane Review of Exercise Therapy for CFS

    I don't expect anyone to read through these submissions, and I'll try to post some summaries over the next few days or weeks, health permitting. Anyone should feel free to copy any excerpts onto this thread, or to attempt to summarize etc.
  12. seaturtle

    Exercise therapy beneficial for some ME/CFS patients new Cochrane report says

    For reference... Main forum thread for the Cochrane review of exercise therapy (i.e. this thread)... Exercise therapy beneficial for some ME/CFS patients new Cochrane report says...
  13. seaturtle

    Comments submitted to the 2016 Cochrane Review of Exercise Therapy for CFS

    .
  14. seaturtle

    Comments submitted to the 2016 Cochrane Review of Exercise Therapy for CFS

    For reference... Main forum thread for the Cochrane review of exercise therapy... Exercise therapy beneficial for some ME/CFS patients new Cochrane report says http://forums.phoenixrising.me/index.php?threads/exercise-therapy-beneficial-for-some-me-cfs-patients-new-cochrane-report-says.35474/...
  15. seaturtle

    Exercise therapy beneficial for some ME/CFS patients new Cochrane report says

    Submissions by Robert Courtney to the 2016 Cochrane Review of Exercise Therapy for Chronic Fatigue Syndrome. http://forums.phoenixrising.me/index.php?threads/comments-submitted-to-the-2016-cochrane-review-of-exercise-therapy-for-cfs.45282/
  16. seaturtle

    Comments submitted to the 2016 Cochrane Review of Exercise Therapy for CFS

    These submissions focus on: • The review authors switching their primary outcomes in the review, and using unplanned analyses, which has had the effect of substantially changing the interpretation and reporting of the primary outcomes of the review; • A failure to clearly report that there were...
  17. seaturtle

    Comments submitted to the 2016 Cochrane Review of Exercise Therapy for CFS

    Submissions by Robert Courtney to the 2016 Cochrane Review of Exercise Therapy for Chronic Fatigue Syndrome. https://sites.google.com/site/mecfsnotes/submissions-to-the-cochrane-review-of-exercise-therapy-for-chronic-fatigue-syndrome Feel free to copy and post any text elsewhere, but please...
  18. seaturtle

    PACE data request FS50600710 (not the appeal case)

    This elongated graph helps to show what's going on... Timeframe = 0, 12, 24 & 52 weeks...
  19. seaturtle

    Peter White complaining about PACE Trial FOI request and calling for changes to FOI laws

    Notice that this isn't directly attributed to FOI requests. (But a casual reader would be forgiven for interpreting it to mean that it was directly attributable to FOI requests.) It could actually be related to other events, such as the loss of the recordings of therapy sessions from an unlocked...
  20. seaturtle

    The ME community can harm patients

    The phase ii rituximab trials [1,2] have indicated that roughly two thirds of patients are responding to treatment, with a 13% response rate in the placebo group of the double-blind trial. This means that there's more than a 50% net response rate. In the double-blind phase ii trial (n=30), there...
  21. seaturtle

    Los Angeles Times - Re FOIA - Why it's OK for taxpayers to 'snoop' on scientists

    Article about the Freedom of Information Act and how it relates to scientists who receive public money. Discusses various controversial issues. Los Angeles Times Friday Aug 21 2015 Op-Ed: Why it's OK for taxpayers to 'snoop' on scientists By CHARLES SEIFE, PAUL THACKER "If the public pays...
  22. seaturtle

    The ME community can harm patients

    I've been longing to see those words published in a mainstream newspaper! :) I take it back that the PACE trial didn't give us any useful results! ;)
  23. seaturtle

    The ME community can harm patients

    You all know this already, but I think we can't repeat it enough... The lowest level of physical functioning permitted by the (post-hoc) definition of 'recovery' for the PACE trial, actually indicates deterioration after treatment (which is obviously the opposite of a 'recovery'), and it's a...
  24. seaturtle

    PACE Trial team won't release data they've already published in graph form

    First of all, all of the data below needs to be double-checked because it's been a while since i studied the papers, and there may be mistakes in both interpretation of, and copying of, the data. So please don't rely on the data that I've presented. If anyone spots any glaring or subtle errors...
  25. seaturtle

    PACE Trial team won't release data they've already published in graph form

    It's worth noting that, for CBT, there were absolutely no objectively-measured improvements in the PACE trial: Employment outcomes - no improvements. Welfare benefit claims - no improvements. Private insurance claims - no improvements. Physical disability (6 minute walking test) - no...
  26. seaturtle

    PACE Trial team won't release data they've already published in graph form

    It's also an odd remark to make because CBT and GET didn't meaningfully improve average 'tolerance of physical activity' in the PACE trial, as assessed via the 6 minute walking distance test. If they're still seeking to improve 'tolerance of physical activity' with CBT and GET, then they clearly...
  27. seaturtle

    PACE Trial team won't release data they've already published in graph form

    Indeed. In this published paper (the mediation analysis) in which the fitness data was published, the authors quietly acknowledged that their deconditioning hypothesis for CFS was not supported by their data. But it's only a very brief and subtle acknowledgement in one line of text; Blink and...
  28. seaturtle

    Positive vs negative outcomes of Exercise rehab in ME/CFS probed via online survey (Pheby 2013)

    There were three letters published in response to the paper in the opening post, and now the lead author has replied to the letters... Not all of the letters are open access but the author's response is currently open access... Harms and benefits associated with exercise therapy for CFS/ME...
  29. seaturtle

    Critical letters for PACE mediation paper and non-response response from PACE.

    If anyone hasn't read through these letters yet, I recommend reading them... One letter (Simon McGrath) effectively trashes the conclusions of PACE trial mediation analysis, and points out that the investigators didn't actually demonstrate a mediation effect, and that their conclusions were not...
  30. seaturtle

    Critical letters for PACE mediation paper and non-response response from PACE.

    Posting these for easy reference... The Lancet Psychiatry. Volume 2 - p281-362 e6-e13 - Apr 2015. Index: http://www.thelancet.com/journals/lanpsy/issue/vol2no4/PIIS2215-0366(15)X0004-6 George Faulkner: http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00089-9/fulltext Simon...