• 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. BS3boy

    Rituximab Phase III - Negative result

    I really think they need to subgroup seriously for this sort of thing, and do that with a rigorous battery of tests & also detailed interviews on illness history, and illness pathway patterns, for the trial participants. Maybe even using genetic information. Otherwise, you get a homogenous group...
  2. BS3boy

    David Tuller: My brief encounter with Prof Crawley

    - Really? Would this be for adults this time, and do you have any details? eg. who is funding it? Thanks......
  3. BS3boy

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

    It makes me very mad, believe me! I was in full time work in 2011 when PACE results came out & I was shouting at the radio in the car; the SMILE trial results/announcements / press coverage has made me very cross, as has some of the SMC comment. I consider myself "recovered", not "cured" -...
  4. BS3boy

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

    Thanks Jonathan. Appreciated. I've been reading your posts on here on & off for months, so glad you think I'm doing a "great job"! :) - you too! And when i had CFS/ME, i was a very angry person on occasion as well. I once remember sitting in a park on my own and mentally composing a furious...
  5. BS3boy

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

    Agreed. Also interesting to sample people in different states within stages, eg. relapse. I saw a study recently that showed a 24 hour delay in certain areas of inflammation following exertion . THis is the sort of science they need to study, to find physiological answers.
  6. BS3boy

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

    well yogi, you failed earlier (calling me a "stooge"), but well done, you've now completely alienated me. if that was your intention, you succeeded. Just what the ME world needs - more alienation. FYI I OWN a copy of "science politics & ME", have read it, know about the history of the illness...
  7. BS3boy

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

    .... and not just different types & severity but ... different stages of the illness too! Something I am trying to remind interested parties of when I talk to them. EG. today. One of the researchers at CMRC just talked about "fatigue" . ie. "Reduced fatigue" ."More fatigue". I despaired. Many...
  8. BS3boy

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

    Hi Jonathan, many thanks for the reply! Agree with you. I'm feelign pretty flat following the SMILE result and press last week, and after the MEGA funding issues, it's been a few weeks of mixed news in our world. The NICE guidelines review is a glimmer of hope - so long as it goes the "right"...
  9. BS3boy

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

    Hi Cinders66, thanks! you're welcome. Yeah I criticised the headlines (quite right) then made a meal of not criticising the trial (PACE) - i had been asked, as it was a talk on patient involvement, not to actually name trials I/we hated, as it's not a slagging match. I could have worded it...
  10. BS3boy

    Link to videos of talks from the CMRC conference

    Hi Esther12 again, ha ha my failure to get approved on here was due to a typo in my email address - my bad - d'oh! :) Anyway, Yes, I had seen your criticism of my talk; it's fine; i was ill (not ME - a bug), and was moving house (!!!) all in the run up to the CMRC conference, so I wasn't /...
  11. BS3boy

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

    Hello Esther12 - I finally get approved on here (!) - thanks; & yes, my talk wasn't perfect at all; but never mind (I *Was* very nervous). I was representing a patient advisory group primarily - though obviously some points (the quips) were my ideas. Am absolutely not in the business of...