• 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.

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  1. R

    Vote Daily To Help Blue Ribbon Foundation Win $50K For Medical Fellowships For ME

    75252 http://www.eaglerarelife.com/content/ryan-prior I've got my fingers and toes all crossed for Ryan's success. Hope that we'll all be back with something good to celebrate. :)
  2. R

    Vote Daily To Help Blue Ribbon Foundation Win $50K For Medical Fellowships For ME

    74863 and closer... http://www.eaglerarelife.com/content/ryan-prior
  3. R

    Vote Daily To Help Blue Ribbon Foundation Win $50K For Medical Fellowships For ME

    74650 http://www.eaglerarelife.com/content/ryan-prior
  4. R

    #my2016MEawards: Acknowledge people and groups in the ME community you are grateful for

    I nominate @Jonathan Edwards for his commitment to uphold the integrity of the scientific process; for always speaking up for patients, and especially for his testimony at the Information Commissioner Tribunal.
  5. R

    Vote Daily To Help Blue Ribbon Foundation Win $50K For Medical Fellowships For ME

    73950
  6. R

    #my2016MEawards: Acknowledge people and groups in the ME community you are grateful for

    I’d like to nominate @ClarkEllis for his initiative earlier this year that united all but one (AYME) of the UK ME/CFS charities in the call for the PACE trial data to be released, with many charities from around the world also joining the call. A huge achievement.
  7. R

    Vote Daily To Help Blue Ribbon Foundation Win $50K For Medical Fellowships For ME

    73412 !
  8. R

    Vote Daily To Help Blue Ribbon Foundation Win $50K For Medical Fellowships For ME

    73202.
  9. R

    Vote Daily To Help Blue Ribbon Foundation Win $50K For Medical Fellowships For ME

    72735 http://www.eaglerarelife.com/content/ryan-prior
  10. R

    Vote Daily To Help Blue Ribbon Foundation Win $50K For Medical Fellowships For ME

    :tulip:72581 Thanks for starting this thread @frenchtulip.
  11. R

    Vote Daily To Help Blue Ribbon Foundation Win $50K For Medical Fellowships For ME

    71942 I've only just discovered this. :bang-head: Fully signed up now though and it's been put to the top of my daily Nice Things I Can Do list.:)
  12. R

    $240,000 raised!!! #TripleTuesdayOMF- For every $1 donated OMF will receive $3!!! $100k goal!

    I donated yesterday. This thread is lovely to visit, like a little oasis of calm and good vibes. :thumbsup:
  13. R

    WE HAVE A LETTER

    My husband is ill today so not sure when able to check in again. I haven’t been able to keep up with the drafts and consider them properly in their entirety. Sorry. Really appreciate everyone’s efforts though. Sorry to keep going on about the 25% Group! but still feel concerned by its...
  14. R

    WE HAVE A LETTER

    Re mentioning the 25% group in the letter, JonathanEdwards has just posted about patient selection and numbers on the petition thread: "The Biobank recruited not from clinics but from primary care. That has the advantage that it picks up everyone in a defined population who is known to the GP...
  15. R

    WE HAVE A LETTER

    I'm concerned about suggesting that the 25% Group might provide a suitable cohort of participants. I'm a member of the 25% Group and think it would only provide a very small percentage of what we need. I think they would have to go much wider than this to get the numbers. Suggesting them could...
  16. R

    WE HAVE A LETTER

    I'm concerned about suggesting that the 25% Group might provide a suitable cohort of participants. I'm a member of the 25% Group and think it would only provide a very small percentage of what we need. I think they would have to go much wider than this to get the numbers. Suggesting them could...
  17. R

    WE HAVE A LETTER

    I think citing Edwards’ recommendation of “an extension of the methodology already developed by the UK Biobank based at LSHTM” covers the CCC point . We could add a comment to the effect that using this protocol would also meet the recognised international standard for ME/CFS research.
  18. R

    WE HAVE A LETTER

    I like what JaimeS has done with the letter, it hits the buttons for me in terms of tone and expression. I agree with AB that we should cite Edwards. Edwards' comments draw out that rigorous patient selection is fundamental to the success of the study and that an example of the required...
  19. R

    MEGA 'Why broad definition should be used as a starting point - by Prof Stephen Holgate'

    Dialogue has always got to be good but I don’t think the fact that SH is communicating with patients over the details of the study means anything if MEGA hasn’t looked at and dealt with the history of ME/CFS research in the UK and how it has negatively impacted patients lives. You can even...
  20. R

    Patient advisories and communication - discussion

    Irrespective whether the rumour is true, I think it's reasonable to ask all MEGA team incl. patient reps, charities etc to declare whether they have any conflicts of interest.
  21. R

    Patient advisories and communication - bullet points

    Concerned that patients are being asked to endorse MEGA when we have not yet seen the detailed proposal for this science.
  22. R

    Guarantee of Data Sharing and Conflict of Interest declaration - bullet points

    The principle of patient access to anonymised data is fully supported by the recent tribunal finding.
  23. R

    Patient Selection Criteria - Bullet Points

    need to use samples from the existing (bio bank) which has samples available from people carefully screened to ensure they meet NICE, Canadian and Fakuda diagnostic criteria
  24. R

    Patient Selection Criteria - Bullet Points

    the likelihood of severely affected patients giving stronger biological signals, The Open Medical Foundation study is looking at severely affected patients (Source). We also note that the CDC is expanding its study to include severely affected cases
  25. R

    Patient Selection Criteria - Bullet Points

    question and answers feature the symptom fatigue no less than ? times, yet does not mention the mandatory symptom for ME of post exertional malaise once
  26. R

    Patient Selection Criteria - Bullet Points

    concerned that the study will not use post-exertional malaise as a mandatory symptom for diagnosis, as required by the IOM criteria.
  27. R

    Extreme food sensitivities - any can relate?

    I have severe intolerance to many foods. I wish I could help more, but for me it's largely been trial and error, trusting my instincts. Keeping a journal is a great help, I was also lucky at the outset to find an allergist and nutritionist at a specialist allergy clinic who believed me and...
  28. R

    PACE trial re-analysis and the 2007 NICE guideline on ME/CFS

    Thank you, Charles, for saying that the UK ME/CFS charities need to be, and are listening to what their members are saying. Also for starting this thread which I think has pulled out lots of useful points among PR members. Thanks everyone. Trouble is they keep going round and round in my head...
  29. R

    PACE trial re-analysis and the 2007 NICE guideline on ME/CFS

    Charles, I do fully realise that you are only explaining the views of NICE and NHS England in your posts, and I’m sure you appreciate that those views are totally unacceptable to many of us and regarded as insufficient reason for them to leave the current NICE Guidelines on ME/CFS in place. As...
  30. R

    solved lifelong 3AM insomnia by speeding up colon

    This has given me lots to think about. Thanks Pippi. A year ago I started getting nausea right after food and sensed it might be because I'd started eating more fruit because it just ferments with me - I can never digest it properly. So I decided to give up eating fruit altogether for a while...