• 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.

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

Search results

  1. J

    ME/CFS Genes Study by Dr. Nancy Klimas - Still Recruiting!

    @Neunistiva Do you know if this is limited to people in the US or can anyone upload their DNA results?
  2. J

    US Senators Co-sponsoring resolution on ME/CFS

    From #MEAction https://www.congress.gov/bill/115th-congress/senate-resolution/508
  3. J

    The U.S. Chronic Fatigue Advisory Committee (CFSAC) is looking to fill six vacant positions as votin

    ME Action is highlighting these vacancies https://www.meaction.net/2018/03/26/cfs-advisory-committee-seeks-voting-members/
  4. J

    Naviaux et. al.: Metabolic features of chronic fatigue syndrome

    Yes I took it that they edited the title to reflect the delay. I remember the fall being the original timescale and then remember seeing the late fall being an update.
  5. J

    Naviaux et. al.: Metabolic features of chronic fatigue syndrome

    For anyone waiting to hear news about the replication study it looks like it's been delayed again. It was tentatively scheduled to be published 'this fall' and then 'late this fall' but it's now early next year. I was hoping for an early Christmas present. Replication Metabolomics Study with...
  6. J

    NCNED MRI study

    Yes it is, a thread discussing it has been started here: http://forums.phoenixrising.me/index.php?threads/decreased-connectivity-and-increased-bold-complexity-in-the-default-mode-network-in-individuals-with.56258/
  7. J

    Ramsay awards 2017

    Cort has posted on this years Ramsay ME/CFS research awards. https://www.healthrising.org/blog/2017/10/31/smcis-ramsay-awards-spark-international-efforts-understand-mecfs/ Direct links http://solvecfs.org/2017-ramsay-award-program-team-1/...
  8. J

    UNREST screening and reception at the Speaker's House, House of Commons

    Dear John, This week is a big moment for raising awareness of ME in the UK with the premiere of Unrest! Part of the film's launch includes a screening and discussion for MPs & members of the House of Lords in the Speaker’s State Rooms tomorrow, 24th October, 12.30-2pm. We need as many MPs...
  9. J

    The epigenetic landscape of ME/cfs: deciphering complex phenotypes

    Is this the original paper being discussed here http://forums.phoenixrising.me/index.php?threads/epigenetic-modifications-and-glucocorticoid-sensitivity-in-myalgic-encephalomyelitis.49460/
  10. J

    Grey and white matter differences in CFS - A voxel-based morphometry study.

    This is already being discussed here: http://forums.phoenixrising.me/index.php?threads/grey-and-white-matter-differences-in-chronic-fatigue-syndrome.54788/#post-915301
  11. J

    Wellness blogger fined for fake cancer tale

    http://www.bbc.co.uk/news/world-australia-41423491 So it's not just the ME community that is targeted by charlatans
  12. J

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

    A modern day take on "but the emperor is not wearing any clothes shouted a child"
  13. J

    Embargo broken: Bristol University Professor to discuss trial of quack cfs tx

    Does that mean they are hoping for publication in tomorrow's newspapers?
  14. J

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

    @Jonathan Edwards was this the good news you were alluding to last week?
  15. J

    Early Day Motion (271) on the NICE guideline tabled by Stephen Timms MP:

    22 MP's have now signed the motion, up from 14 yesterday. http://www.parliament.uk/edm/2017-19/271 Glad to see that my MP George Howarth has signed, wrote and asked him on Tuesday, so it is worthwhile contacting your own MP. https://www.writetothem.com/
  16. J

    The Synergy Trial: Phase 2 results out

    http://www.kpaxpharmaceuticals.com/the-synergy-trial A follow up study to the phase 1 study discussed here: http://forums.phoenixrising.me/index.php?threads/kpax-synergy-methyphenidate-ritalin-trial-results-are-out.37363/
  17. J

    Early Day Motion (271) on the NICE guideline tabled by Stephen Timms MP:

    Now up to 14 http://www.parliament.uk/edm/2017-19/271
  18. J

    New PET study planned in Japan

    https://upload.umin.ac.jp/cgi-open-bin/ctr_e/index.cgi
  19. J

    Practical management of chronic fatigue syndrome or myalgic encephalomyelitis in childhood

    They are now recruiting for a: Research Associate Trial Manager for Paediatric CFS/ME https://uk.linkedin.com/jobs/view/447010619
  20. J

    NCNED MRI study

    Interesting fMRI study under way at NCNED in Australia Facebook page https://www.facebook.com/National-Centre-for-Neuroimmunology-and-Emerging-Diseases-NCNED-301252900007181/
  21. J

    Video by Dr Myhill: Time to stop the abuse of CFS patients

    A couple of factual errors on the PACE study costing £8m and the appeal going as far as the Ombudsman but otherwise excellent.
  22. J

    "Exercise Tests Suggest Autoimmunity..." Cort Johnson

    Here are the studies I think Cort is alluding to. Miwa's first study: https://www.ncbi.nlm.nih.gov/pubmed/24736946 " In conclusion, a small LV size with a low cardiac output was common in ME patients, in whom OI was extremely common. Cardiac dysfunction with a small heart appears to be related...
  23. J

    Notorious lying UK benefit assessors for the DWP caught on tape

    That is almost a word for word copy of what was said at my PIP assessment 2 weeks ago. I'm on 30mg of Amitriptiline to help me sleep (can't without them) and was baffled when she insisted I was taking them for something else. It left me baffled. But now it looks as though they are instructed to...
  24. J

    Physiological measures in participants with chronic fatigue syndrome, multiple sclerosis and healthy

    There was a press release about this study a couple of months ago. Discussed here: http://forums.phoenixrising.me/index.php?threads/distinguishing-cfs-new-zealand-research.51357/ "To find out more, Dr Hodges is completing another trial examining the physiological differences in repeated maximal...
  25. J

    Cytokine signature associated with disease severity in chronic fatigue syndrome patients

    Smithsonian.com are covering the story. Comments are available but 2 of the 3 so far are not good. Perhaps some on here would like to respond? http://www.smithsonianmag.com/smart-news/mysterious-chronic-fatigue-syndrome-finally-gets-cause-180964290/
  26. J

    Daily Mail - Disgusting old fart ....

    I wonder if any of them were 'plants' within those organizations and once the communist threat was over they showed their true colours by continuing to work for their true masters.
  27. J

    Jarred Younger on CFS subgroups (video)

    Cort has posted an article covering the video. https://www.healthrising.org/blog/2017/07/15/immune-subsets-chronic-fatigue-syndrome-younger/
  28. J

    Sex offender treatment in prison led to more offending

    When will they look at the evidence of psychological treatment not working for us? http://www.bbc.co.uk/news/uk-40460637