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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. Esther12

    Prof Sir Regius Simon Wessely on Judicial Appointments Commission

    It looks like they (claim to) have quite stringent requirements for declarations of possible blemishes in one's history. I wonder if Wessely declared his role in the PACE scandal, or the attempts to smear patient critics, and then use those smears to avoid an order to release PACE data at an...
  2. Esther12

    Rituximab Trial - SMC Expert Opinion?

    "Of course I'd be happy to give a quote Fiona: It is important that all journalists realise that the SMC is not a trustworthy source on issues related to ME/CFS. End."
  3. Esther12

    What some doctors really think of us

    Perhaps also a useful illustration of the sort of tactics in these sorts of debate that can backfire. When engaging with those unfamiliar with the controversy, it's best to be very cautious and slow in the claims made. Lots of people don't really engage in discussion or debate, but can have...
  4. Esther12

    Professor James Coyne commenting on poor British and Dutch fatigue research

    https://eenvandaag.avrotros.nl/item/grote-controverse-over-behandeling-chronische-vermoeidheid/ Translate...
  5. Esther12

    Professor James Coyne commenting on poor British and Dutch fatigue research

    I thought that Sarah Myhill was probably not the best person to quote on this. The Jim Faas' bit on rulings by the Supreme Administrative Court (via google translate) is interesting. Does anyone have more details on this?
  6. Esther12

    SMILE trial results - MEA critique

    Thanks a lot for doing that. I thought there were a lot of good points included. Some bits I wasn't so sure about, eg: I understood what you were getting at here, but thought that the phrasing made it sound less persuasive than it could have been. As Jonathan Edwards makes clear, it's the...
  7. Esther12

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

    That's true. I've not got their paper in front of me, but I thought that for the primary outcome it was relatively high. Also, my judgement will have been shaped by my expectation that lots participants would have said "what is this BS?!" and then never had any contact with them ever again.
  8. Esther12

    "Unrest" Documentary Reviews

    People can get some misguided views about the ease of identifying 'ME' as apart from 'CFS' and the meaning of the two diagnoses. Then that will lead on to harm. It's another reason why we need to keep challenging each other's beliefs and pushing towards the truth. On the plus side, it was only...
  9. Esther12

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

    I was surprised how low their drop out rate was, considering how quackery LP is (they were getting some data from a high % of participants, even if self-report school attendance seemed to be missing a lot). It does sound like they put a lot of effort into chasing people up.
  10. Esther12

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

    If there were not problems with response bias, etc, that seems a significant difference (my hunch, based on little research) so imo that's not an area worth prioritising for criticism.
  11. Esther12

    Very Sad

    It's getting harder and harder to explain away all this as mere incompetence. What on Earth is going on here? It's bewildering. This drama has led to some real lost opportunities with SMILE, Crawley and the Lightning Process. So much time and effort has been wasted, from people who have so...
  12. Esther12

    Tuller & Rehmeyer in STAT: Why did it take the CDC so long to reverse course..

    Bump, just because it's incredulous that this isn't even onto a second page of comments! edit: I meant 'incredible' - a combo of typo and auto-correct?
  13. Esther12

    Defining and measuring recovery from ME & chronic fatigue syndrome: the physician perspective

    Thanks for the reference. I don't think I ever managed to watch that talk all the way through.
  14. Esther12

    Defining and measuring recovery from ME & chronic fatigue syndrome: the physician perspective

    Was that line actually a quote from Crawley? @slysaint ?
  15. Esther12

    Stressed by ESA

    Sounds like it is just an administrative error. Fingers crossed it will all get sorted out easily on Monday. Sometimes these things do turn out to be no problem, and nothing to worry about. The system includes so many nightmarish aspects that it's hard to not find it all super stressful though...
  16. Esther12

    Jen Brea and Unrest make it into the BMJ as an opinion piece

    I agree that it's worth being aware of these sorts of issues, and doing what we can to present concerns as effectively as possible. It's probably good to have people responding in a range of way - many of those at the BMJ are just not going to be willing to recognise how badly they've got things...
  17. Esther12

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

    I think it makes the most sense to analyse SMILE data according to randomisation. It's not exactly ideal that participants deviated from the treatments they were randomised to, but the researchers can't physically stop that from happening in a trial like this, and I think they dealt with this...
  18. Esther12

    Research Check: can ‘Lightning Process’ coaching program help youths with chronic fatigue?

    Phil Parker keeps claiming it's not a psychological intervention anyway. This was a pretty weak piece of analysis tbh. The fact the LP is loopy leads to some instinctive scepticism, but there's not much willingness to really dig into all the problems.
  19. Esther12

    Tuller Blog on Comments from NICE's expert reviewers (via FOI request)

    Hi Amanda - welcome (back?) to the forums. There were a few places where I'd have made edits to your submission, but it also included a huge amount of useful information. Thanks for all of your work on this.
  20. Esther12

    Income protection policies and ME/CFS: Important legal judgement involving Friends Provident (UK)

    Slimy Anthony Cleare is involved too! On the side of the insurers. Would his submissions to the court be available for request? It might be helpful to know what people like this are submitting for these sorts of cases. Here are the bits of the ruling which mention him:
  21. Esther12

    Help! Daughter's university doing flawed study tying parents perceived illness to students neuroses

    I've not looked at the details of this, but that stood out to me as problematic. I can't imagine that my parents would have put up with being written to like that. "There is absolutely no obligation for you".... assuming you don't mind depriving your child of half a credit they've already done...
  22. Esther12

    Jen Brea and Unrest make it into the BMJ as an opinion piece

    There was also some discussion of it here: http://forums.phoenixrising.me/index.php?threads/unrest-documentary-reviews.48904/page-2#post-916160 I was less keen on the review.
  23. Esther12

    "Unrest" Documentary Reviews

    Maybe. I still think my interpretation is more likely, but I expect I've read and re-read the BMJ's past coverage rather more closely than most of their readers, so I can't really know how they'd interpret it. I think Wessely would be happy with the review, and that alone makes me dislike it!
  24. Esther12

    "Unrest" Documentary Reviews

    Do you think most readers of the BMJ will take it that way? Given the BMJ's past coverage I think it's more likely that they will take it as a criticism of patient's 'harassment' of psychological researchers? I find that sort of thing irritating in a piece in the BMJ that fails to acknowledge...
  25. Esther12

    David Tuller: NIH Grants $2.1 Million to UK Biobank!

    Does anyone else get the impression that Tuller isn't happy about being accused of 'libellous blogging'? I hadn't thought that Holgate could have been hoping for the funding the Biobank got - an extra reason for good cheer. I have to admit that I got a shiver down my spin when he spoke of his...
  26. Esther12

    Breaking News! UK ME/CFS Biobank team receives largest ever grant to continue biomedical research pr

    The decision to fund FITNET-NHS got plenty of coverage and hype via the SMC: http://forums.phoenixrising.me/index.php?threads/science-media-centre-with-holgate-crawley-mccrone-more-anti-patient-prejudice-fitnet.47676/
  27. Esther12

    More from Science Medica Centre on SMILE

    People can tell me off for being too critical about everything, but I'd be cautious on some of this stuff, eg: I think that it's often best to claim less rather than more, especially when so much important evidence is on our side, although I know I can often slip into posting too loosely...
  28. Esther12

    Grey and white matter differences in Chronic Fatigue Syndrome

    I never take the time to look at the details of studies like this, but surely it would have been handy to have an ill-health control group too? Groups with different experiences wil tend to have used their brains in different ways.
  29. Esther12

    28th Sept: The cost of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) to the UK economy

    Seems that you have done a much better job of going through it than I! That's a good point about some people already being on PIP. edit: Also, it could indicate turn out that people with CFS are now finding it much harder to gain access to financial support under PIP (which seemed to be the...