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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. biophile

    PACE authors' response to Geraghty editorial

    Also it can be argued that the minor change in 6MWD is not clinically significant.
  2. biophile

    Jonathan Edwards is doing a commentary for the Journal of Health Psychology

    A special edition mostly written by critics of PACE. Also, confidential for now but once the edition is published JC is allowed to go public with the multiple methods of pressure and bullying that PACE engaged in behind the scenes trying to have KG's editorial retracted. Not a good start of the...
  3. biophile

    PACE authors' response to Geraghty editorial

    Haven't had a closer look either but noticed this: In the editorial to the mediators paper, the lack of improvement to fitness prompts the authors to say patients probably pushed harder on the 6MWD rather than being fitter.
  4. biophile

    PACE authors' response to Geraghty editorial

    I might also say that lower expectations of the CBT group *before* therapy began does not explain away the response biases produced *during* therapy.
  5. biophile

    PACE authors' response to Geraghty editorial

    I haven't had a close look at the draft yet but on the subject of countering spin mentioned in KG's editorial, would it be worth adding that 52-week follow-up data was already completed for approximately half of the participants before the Global Financial Crisis increased unemployment rates in...
  6. biophile

    PACE authors' response to Geraghty editorial

    @ Woolie. I see your point. I have lots of ideas for the commentary but will end up focusing mostly on FOIA related issues. However I may briefly challenge some of their other claims e.g. CBT and GET are effective and safe, criticisms have all been addressed elsewhere, etc. I think I might add...
  7. biophile

    New group to discuss commentaries being written on PACE Trial (and possibly other things)

    I might join later when feeling a bit better or can use my eyes more, and when my draft is more developed.
  8. biophile

    Questions from Steven Lubet for possible Journal of Health Psychology commentary

    White authored a book promoting the BPS model: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1199645/ Also I think someone found evidence White had a company once that was meant to promote the BPS model in healthcare. There are probably other books by the PACE team?
  9. biophile

    Questions from Steven Lubet for possible Journal of Health Psychology commentary

    How about the earlier Fulcher & White paper on GET?
  10. biophile

    Questions from Steven Lubet for possible Journal of Health Psychology commentary

    1 & 2 may be partly covered by the treatment manuals for CBT and GET. And what about White et al walking out of a meeting (for the CMO guidelines?) when they weren't getting their way re CBT/GET vs pacing. PS - Were you going to set up a separate PR group? I would generally prefer to keep this...
  11. biophile

    I got invited to write a commentary on White et al response to Geraghty. I've accepted

    Confidentially, there are a few PACE sympathizers but the clear majority are probably going to be critical. PACE not only replied to the editorial but they tried various methods (unsuccessfully) to have it retracted. I don't think it's going to be a good year for PACE. The Tuller articles and...
  12. biophile

    Know of any papers claiming ME/CFS subjects deny psychological issues and this can perpetuate their disease

    But does the article Twisk is responding to have any quotable quotes about CFS being a mental disorder and patients deny their psychological problems which makes the condition worse?
  13. biophile

    PACE authors' response to Geraghty editorial

    I've been invited too so I will want to cover the issues I suggested here and Woolie probably won't have to address them anymore, at least the FOIA specific ones.
  14. biophile

    I got invited to write a commentary on White et al response to Geraghty. I've accepted

    Coyne sent en email about all the invitations. There are so many! I emailed him back about whether I could get one. The tide has turned if White et al are facing multiple critical responses after having spent the last 5 years or so getting final say in any published correspondence.
  15. biophile

    I got invited to write a commentary on White et al response to Geraghty. I've accepted

    You're probably right about Coyne thinking I was too unwell. Here is a possible idea. Of course don't give up your slot, but maybe you could contact the editor and say it would be better for me to comment on some issues such as the FOIA request since I was the one who got the data and led the...
  16. biophile

    I got invited to write a commentary on White et al response to Geraghty. I've accepted

    I might submit one anyway. Edit: Oops I just realised that I should not do that as it means I have seen the White et al reply before publication. But if I do not receive a invitation, I could submit a commentary after the others have been published. Seeing how I was the "member of the public"...
  17. biophile

    Know of any papers claiming ME/CFS subjects deny psychological issues and this can perpetuate their disease

    Not sure if this is useful but Twisk recently replied to a paper that claimed CFS is a mental disorder, maybe there is something in the paper in question, although I cannot access it. Here is the Twisk reply: http://www.asianjournalofpsychiatry.com/article/S1876-2018(16)30289-1/abstract
  18. biophile

    Correlations between outcome measures in PACE

    Will take a closer look later but the way to combat the subjective vs objective thing is to point out patients have objectively measured deficits in function and these are not improved by CBT and GET despite a part of the therapy is increasing activity levels. Also I think one reason why...
  19. biophile

    I got invited to write a commentary on White et al response to Geraghty. I've accepted

    Sounds good. If it was me covering safety I would cover the following: With safety, the thresholds for serious deterioration and serious adverse effects are very high. Whereas most side effects patients experience would be less severe. There were no significant differences between groups for...
  20. biophile

    Internet security

    http://www.news.com.au/technology/online/this-is-the-real-threat-to-online-pirates-and-the-digital-privacy-of-australians/news-story/9ce03e418fdce798ffa4f69312bac964
  21. biophile

    Know of any papers claiming ME/CFS subjects deny psychological issues and this can perpetuate their disease

    I'm sure there are a few hardliner BPS papers or books coming close, but nothing solid comes to mind right now and I don't have the energy yet to go looking at all my notes.
  22. biophile

    Know of any papers claiming ME/CFS subjects deny psychological issues and this can perpetuate their disease

    I wonder if the Wessely study that found CFS patients in general do not have a prejudice against psychiatry might contain something useful in the introduction and discussion sections?
  23. biophile

    Draft reply to White et al's letter in Private Eye

    I don't think that's it. White et al are responding to stuff about the PACE trial and the FOIA case that I can't see in the above link. Edit: Graham posted Part 1 but I think White et al are responding to Part 2...
  24. biophile

    David Tuller thread

    I still have in mind a re-analysis of improvement etc. It will most likely find the same or similar figures as those reported on the QMUL website, but they failed to correct for multiple comparisons and when looking at the p values on the QMUL website some are likely to fail correction. Also, we...
  25. biophile

    Draft reply to White et al's letter in Private Eye

    Does anyone have a link to the Private Eye article that White et al are referring to?
  26. biophile

    Draft reply to White et al's letter in Private Eye

    Happy to co-sign but it would be better to say "no significantly increased" recovery rates. I suggest adding this if room allows, probably more important or relevant to their claims here than the part about benefit payments? "The trial consent forms promise that the identity of patients would...
  27. biophile

    FOI request