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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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  1. Daisymay

    Why is nobody talking about this Enterovirus study?

    Thanks Hip, yes that makes a lot of sense. I first got Epstein Barr infection, never got over it and six months later came down with another severe viral infection which turned out to be Coxsackie B3. I was teaching infants at the time and many of the children had a mild viral infection which...
  2. Daisymay

    Why is nobody talking about this Enterovirus study?

    Hip, do you know of any research which tries to answer why the 1% get symptomatic polio, is there any difference in genetics or whatever?
  3. Daisymay

    A Review of BMJ Best Practice Document on Chronic Fatigue Syndrome by Professor James Baraniuk

    Professor Hooper’s peer-review comments were written to indicate the accurate situation that now obtains concerning the PACE trial raw data. People can judge for themselves if his comments were accepted by the BMJ by looking at their updated version of “Best Practice on CFS” released in...
  4. Daisymay

    New Smart Meter

    The film you mentioned, "Take back your power" is now available free on Youtube if anyone is interested:
  5. Daisymay

    Professor Hooper replies to a letter from UK Under Secretary of State for Health

    Professor Hooper sent this reply to a letter from the Under Secretary of State for Health, Lord O’Shaughnessy, regarding the PACE trial. http://margaretwilliams.me/2018/hooper-to-phillipson.pdf
  6. Daisymay

    Highlights of Professor Anthony Komaroff’s webinar “HOT AREAS IN ME/CFS RESEARCH”

    http://www.margaretwilliams.me/2018/highlights-of-prof-anthony-komaroff.pdf Highlights of Professor Anthony Komaroff’s webinar “HOT AREAS IN ME/CFS RESEARCH” on 24 th May 2018 for The Solve ME/CFS Initiative Margaret Williams 4th June 2018
  7. Daisymay

    New Blood Test for Chronic Pain

    Very interesting, thanks for posting.
  8. Daisymay

    NIH still needs patients

    Thanks that's all very interesting. I'm really glad you are bringing up the time scale issue, they need to realise how seriously ill so many people are and that time is not on their side, but I appreciate it is a very complex study, but perhaps there is scope to push the whole...
  9. Daisymay

    NIH still needs patients

    Many thanks for taking part and to everyone else who is taking part x Could you please explain what the metabolic chamber bit is about and involves? And that's interesting, the spinal fluid test is for viruses? Do they also test for other things like cytokines etc? When do they hope to have...
  10. Daisymay

    Contribution to science of Regius Sir Simon Wessely: a thirty year retrospective

    http://www.margaretwilliams.me/2017/thirty-year-retrospective.pdf The incalculable contribution to medical science of Regius Professor Sir Simon Wessely: a thirty year retrospective. Margaret Williams 28th December 2017
  11. Daisymay

    PIP assessment companies admit ‘unacceptable’ failings on quality of reports Dec 2017

    Quote from article: " Despite these repeated failings, Haley and Freeman said they had never been called in to discuss the problem with successive work and pensions secretaries." Well that doesn't surprise me.....perhaps the DWP have failed to look into this because the DWP wants as few...
  12. Daisymay

    Video Dr. Byron Hyde - Enterovirus theory?

    Thanks Mithriel, very interesting.
  13. Daisymay

    David Tuller: My brief encounter with Prof Crawley

    With a child surely the parents are the ones who consent to the treatment on behalf of the child (well of course in discussion with their child), therefore it is the parents who must be fully informed by the doctors of all risks so they can make what they deem to be the best decision for their...
  14. Daisymay

    David Tuller: My brief encounter with Prof Crawley

    Sorry CG, I posted just after you so didn't see this post.
  15. Daisymay

    David Tuller: My brief encounter with Prof Crawley

    Even if it wasn't deemed possible to put the video on-line, if it could be made available to Prof Edwards it sounds as if that could be a very productive move.
  16. Daisymay

    David Tuller: My brief encounter with Prof Crawley

    Yes she'd make a really good politician
  17. Daisymay

    Esther Crawley - talk 17th Nov Mood disorders Centre, Exeter Uni

    Ooh even more intriguing, assuming it's a good day to remember not a horrendous one!
  18. Daisymay

    Esther Crawley - talk 17th Nov Mood disorders Centre, Exeter Uni

    Intriguing! Thanks for going, rest now x
  19. Daisymay

    PACE Trial and PACE Trial Protocol

    Not sure if this will do, from the original PACE paper, p3 at this link: http://www.thelancet.com/pdfs/journals/lancet/PIIS0140-6736(11)60096-2.pdf Panel 1 - treatments provided CBT was done on the basis of the fear avoidance theory of chronic fatigue syndrome. This theory regards chronic...
  20. Daisymay

    If your doctor is clueless, direct them to the BMJ's Best Practice Summary for ME

    I agree it think this is a big step forward for us, still many steps to go but progress.
  21. Daisymay

    Very Sad

    Absolutely agree! Gentle cyber hugs to all x
  22. Daisymay

    Very Sad

    I've not been able to be on line so much recently, just dipping in and out and seem to have totally missed what on earth has been going on. This is really shocking to see PR friends leaving and talk of PR folding.
  23. Daisymay

    More from Science Medica Centre on SMILE

    I'm sorry you, or anyone has had to deal with any aggro but as you say, it's unfortunately the same as anywhere, not specific to PWME.
  24. Daisymay

    More from Science Medica Centre on SMILE

    I never said PWME were saints, it surely goes without saying any group would have it's fair share of "bruisers".
  25. Daisymay

    More from Science Medica Centre on SMILE

    [ Jonathan, can you be sure these negative responses are from PWME and not trolls stirring up the vexatious ME brigade meme?
  26. Daisymay

    ALL Countries Please sign the MEA's new petition to NICE:do not classify ME as 'functional'

    It is shocking how so many doctors don't change their minds, how rigid they are in their thinking. They like to think of themselves as scientists but so many of them don't think like scientists. It seems as if a large proportion of doctors function like establishment parrots maintaining the...
  27. Daisymay

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

    And as for PWME going to their doctors for medical care, I suspect most of us avid doctors like the plague, so the cost of medical care for ME is much, much lower than for other chronic diseases.
  28. Daisymay

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    Rose, I'm so very sorry Ron and colleagues did n't get a grant. Utterly, utterly absurd. Defies logic.
  29. Daisymay

    New Times article on NICE (mostly good)

    Ah, found her name, Prof O'Leary.
  30. Daisymay

    New Times article on NICE (mostly good)

    Well if it's to take that long, in the interim they really need to withdraw them completely or post a HUGE caveat and inform ALL doctors, physios etc. if not then they are continuing to put patients at risk and completely failing to get fully informed consent from patients, which is necessary...