• 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.

    To become a member, simply click the Register button at the top right.

Search results

  1. Jo Best

    Invest in ME Research International Conference Events 2018

    Just to recap, the 1st Thinking the Future meeting for Early Career Researchers on 29th May was a great success (social media hashtags #ThinkingTheFuture and #ThinkingTheFuture2018 and agenda here: http://www.investinme.eu/thinkingthefutureagenda.shtml) and Vicky Whittemore of NIH has said at...
  2. Jo Best

    Defining Autoimmune Aspects in Severe ME/CFS (UK study, participant recruitment by invitation only).

    Here is a study update by Katherine Seton: http://www.investinme.org/ce-blog-1802-01.shtml Previously, in November 2017: http://www.investinme.org/ce-blog-1710-01.shtml IiME Research Blogs home page: http://www.investinme.org/ce-research-blogs.shtml
  3. Jo Best

    Sponsor IiME Research International Conference Week 2018

    Update by Fundraising 4ME - https://www.justgiving.com/fundraising/fundraising-4me
  4. Jo Best

    Invest in ME Research International Conference Events 2018

    Irish M.E. Trust is once again sponsoring a speaker - http://www.investinme.eu/IIMEC13-news.shtml
  5. Jo Best

    Invest in ME Research International Conference Events 2018

    Patients have set up a page for donations to help sponsor the 2018 events: https://www.justgiving.com/fundraising/fundraising-4me
  6. Jo Best

    Sponsor IiME Research International Conference Week 2018

    Donation page set up by patients: https://www.justgiving.com/fundraising/fundraising-4me
  7. Jo Best

    Invest in ME Research International Conference Events 2018

    New Guest Speaker announced for BRMEC8 - http://www.investinme.eu/IIMEC13-news-180103.shtml
  8. Jo Best

    In Memory of Anne Örtegren

    Thank you for posting @Countrygirl. It is some comfort to know that Anne had the support of her loved ones and expert assistance in bringing her many years of intolerable suffering to an end.
  9. Jo Best

    Myalgic Encephalomyelitis: need more funding for research, awareness, support.

    Posted by Sharon Tiday 16 hrs ago https://petition.parliament.uk/petitions/203140 our story in Chat magazine but one of millions so please keep signing and sharing
  10. Jo Best

    Myalgic Encephalomyelitis: need more funding for research, awareness, support.

    On UK Government and Parliament petition website so only UK residents or British citizens living abroad may sign: https://petition.parliament.uk/petitions/203140 At 10,000 signatures, government will respond to this petition in writing. At 100,000 signatures, this petition will be considered...
  11. Jo Best

    Letter to Valvira - Finland's National Supervisory Authority for Health and Welfare - CBT and GET

    After receiving no reply, IiME Research followed up and Valvira has now removed from its website the statement to the effect that, "Treatments that have some evidence of efficacy (graded exercise therapy and cognitive behavioural therapy) should be made available in the whole country." A small...
  12. Jo Best

    Invest in ME Research International Conference Events 2018

    At the request of IiME Research, Valvira has removed from its website statements to the effect that: "Treatments that have some evidence of efficacy (graded exercise therapy and cognitive behavioural therapy) should be made available in the whole country."
  13. Jo Best

    Rt Hon. Jeremy Corbin MP, leader of the Labour Party, to give opening speech at IiME 2018

    Yay!
  14. Jo Best

    Rt Hon. Jeremy Corbin MP, leader of the Labour Party, to give opening speech at IiME 2018

    Currently 20 signatures to reach a thousand thanks. http://www.groupcard.com/c/vRZACP3vJAn
  15. Jo Best

    Rt Hon. Jeremy Corbin MP, leader of the Labour Party, to give opening speech at IiME 2018

    Thanks @Alison2 :thumbsup: The numbers go up and down a bit because of a glitch on the site, but it's currently 882 and set for delivery by email tomorrow afternoon.
  16. Jo Best

    Match your donation to IiME Research!

    Target reached!
  17. Jo Best

    Thanks very much to those who remember ME & CFS causes in their wills

    Someone told me this morning that Invest in ME Research is named as a benecificiary in their will. Now seeing this thread and looking at their accounts to see how much they receive in legacies, I'm amazed at what they achieve on such a small income. I realise that all their charity work is...
  18. Jo Best

    Match your donation to IiME Research!

    £90 still up for grabs: https://www.justgiving.com/fundraising/nomenbar4me
  19. Jo Best

    Rt Hon. Jeremy Corbin MP, leader of the Labour Party, to give opening speech at IiME 2018

    He may have had sight of it already as some people have tagged him in their tweets, but the delivery date is next Thursday 30th November by email to Ian Gibson for passing on to Jeremy Corbyn.
  20. Jo Best

    Match your donation to IiME Research!

    £102 still to be matched. https://www.justgiving.com/fundraising/nomenbar4me
  21. Jo Best

    Rt Hon. Jeremy Corbin MP, leader of the Labour Party, to give opening speech at IiME 2018

    Thanks for sharing @Countrygirl :thumbsup: Apparently, JC has been supportive of consituents with ME (inc. severe) and his office has been in communication with IiME Research over several years and he has also signed letters, petitions, EDMs supporting ME issues and research into ME, so he's...
  22. Jo Best

    Rituximab Phase III - Negative result

    Article in Aftenposten: https://www.aftenposten.no/norge/i/dd50mz/Nedslaende-forskningsresultat-for-ME-pasienter Rough English translation below via Anna Mitchell's post in IiME Research Facebook group..
  23. Jo Best

    Rituximab Phase III - Negative result

    Simon Carding (Quadram Science) hypothesises that autoimmunity in ME/CFS starts in the gut. https://quadram.ac.uk/targets/me-cfs/
  24. Jo Best

    Rituximab Phase III - Negative result

    As Ron Davis said at the 2016 Invest in ME Conference, "Cancer is complicated. ME/CFS is complicated". Olav Mella said at the 2017 Invest in ME Conference words to the effect that it would be surprising if the first couple of drugs they tested for ME/CFS were found to be the best. Also...
  25. Jo Best

    Match your donation to IiME Research!

    Thanks @jstash :thumbsup:
  26. Jo Best

    Match your donation to IiME Research!

    To donate any amount from £2 from any country: https://www.justgiving.com/fundraising/nomenbar4me Or text (UK only) the code NFME77 any amount from £1 to £5 or £10 to 70070
  27. Jo Best

    David Tuller: My brief encounter with Prof Crawley

    @Countrygirl you're a hero!
  28. Jo Best

    Invest in ME Research International Conference Events 2018

    New addition to the IiME Research Conference events for 2018 provisionally entitled - Early Career Researchers for ME EARLY CAREER BIOMEDICAL RESEARCH COLLOQUIUM FOR ME: http://www.investinme.eu/IIMEC13-news-171101.shtml
  29. Jo Best

    Happy Birthday Jon Campling!

    Actor Jon Campling aims to raise £501 for Invest in ME Research to celebrate his 51st birthday. JustGiving accepts donations from any country of any amount from £2: https://www.justgiving.com/fundraising/support-invest-in-me-for-my-birthday :balloons::balloons::balloons::balloons::balloons:
  30. Jo Best

    Invest in ME Research International Conference Events 2018