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

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Search results

  1. R

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

    I think this does warrant a new thread @Jonathan Edwards, I'm sure lots of people could do to for you if you wish it.
  2. R

    PIP Appeal problem (UK)

    I don't want to derail this thread but @Dolphin posted this on another thread : 'Hey , I hope that evidence of PACE trial is being submitted for this inquiry' . http://www.parliament.uk/business/committees/committees-a-z/commons-select/work-and-pensions-committee/pip-esa-assessments-forum-17-19/
  3. R

    "You and yours" BBC phone in on "chronic fatigue" -26 sept

    Is this even legal? Surely the BBC would protect their staff? Anyone told David Tuller @Jonathan Edwards ? Would the BBC allow this to be a condition, to allow this to not "become part of the story"? I just can't believe this is happening. Surely it is against everything that the Beeb stands for?
  4. R

    NICE GUIDELINE ON ME/CFS WILL BE UPDATED! (Sep 20th 2017)

    Page 4 taking up about a third of the page. Lovely big headlines :):)
  5. R

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

    Thank you @charles shepherd. You managed it very well and handled her brilliantly.
  6. R

    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    The Symposium is still up. It has an option to view again. I've just this minute watched Ron at6.40 and am about to watch Mark Davis at 5.20 :):):)
  7. R

    PACE trial commentaries in the Journal of Health Psychology to be made open access

    Mine arrived today. Phone order on credit card.
  8. R

    New Blog from Cort about Stanford/OMF Community Symposium and how Ron Davis approaches science

    I have the same question. I've registered but have no brain fogged idea of what to do when the time comes. Be very pleased to know in advance to stop the stress and fear of missing it. Thanks in advance, @Ben Howell please can you help?
  9. R

    Coyne on PACE Ethics committee chair Paul Dieppe - 8 July 2017

    funniest thing I've seen in an age
  10. R

    David Tuller needs our help

    last from me too.
  11. R

    David Tuller needs our help

    Me too, I made my second donation a couple of days ago.
  12. R

    David Tuller needs our help

    New credit card month so going again
  13. R

    Organic, gluten-free site in UK

    This isn't for bread. But, in case its of any use, I get great gluten free pasta from https://www.nomadhealth.uk. I eat 'Green Banana' and 'Flaxseed' but hear the others are good too.
  14. R

    David Tuller needs our help

    Done
  15. R

    Efamol's Efamarine discontinued. Need something to replace it

    @halcyon @charles shepherd Thanks for everyones replies. I used to buy direct from Wassen (they together with Efamol were acquired by Vital Heath Foods in 2011) I've spoken to Wassen UK who told me that Efamarine is no longer available but that I should take a bottle of Efamarine in to a...
  16. R

    Efamol's Efamarine discontinued. Need something to replace it

    I've been on Efamarine for years, they definitely helped me with pain and maybe with brain-fog. I'd be grateful for replacement ideas. The MEA was selling them @charles shepherd do you any suggestions? Thanks.
  17. R

    Janet Dafoe's Birthday Donation Campaign!

    Done HAPPY HAPPY BIRTHDAY @Janet Dafoe (Rose49)
  18. R

    Weakness in arms

    I find I can manage some of the pain and weakness in my arms by keeping my elbows at waist level.
  19. R

    Petition to recognize ME in Germany

    Done
  20. R

    An Update on ME/CFS Research with Ronald W. Davis, PhD

    A tiny donation from me.
  21. R

    Anyone else get hard lumps in the armpit?

    I was told that it is benign but it has got larger, commensurate with the the weight that I have gained. I have had it for over 30 years.
  22. R

    Anyone else get hard lumps in the armpit?

    I have one. It was biopsied some years ago, apparently it is breast tissue.
  23. R

    Ben and Claire's adventure to Davis-Dafoe land!

    Wow! Ben, just wow! Plus a barrow of likes and another of thanks to you and everyone.
  24. R

    MAIMES: Would you like a Public Enquiry into the lack of care and treatment for people with M.E?

    Craig was, maybe is, a member of PR. Haven't seen him around since last GMC v Myhill.
  25. R

    Ben and Claire's adventure to Davis-Dafoe land!

    Ben and Claire at Ron and Janet's is the best pick-me-up. Thanks so much for letting us know what you are doing and how it is for you Ben.