advocacy

  1. M

    Advocacy Effort Who to contact to get an FMT clinical trial with high quality donors?

    Low FMT donor quality is likely what's keeping this from being an available cure. I've been following the microbiome literature daily for 4+ years while cataloging it all into this wiki: https://old.reddit.com/r/HumanMicrobiome/wiki/ There is tremendous support for FMT being close to a...
  2. Tina

    Blowin' In the Wind

    This video came in the #MEAction Daily Digest email this morning. It is a remake of Blowin' In the Wind by Bob Dylan. It is really a dig at the PACE trial and all the harm that has done / is doing, but the sentiment can be applied to everything about our disease. The opening line says, "How...
  3. Jill T

    Lead Up to and Exciting Results of Meeting with Government Officials Mar 23/17 in Ottawa Canada

    From Millions Missing Canada: Patients and Advocates Connecting With Ottawa Officials The Myalgic Encephalomyelitis Crisis in Canada will be Discussed at a meeting with officials in Ottawa on March 23rd, 2017. Please go to this link for more information...
  4. AquaFit

    ME/CFS Professional Psychiatrist & Clinical Advocates - Perpetuating Inability to Pace Myth?

    In reply to Mary Dimmock's comment found here: http://www.healthrising.org/blog/2017/01/11/epic-measures-chronic-fatigue-fibromyalgia/?replytocom=740267#respond I'm more concerned about the overall pattern of prominent CFS/ME doctors promoting or accepting the idea that our crashes are due to...
  5. Jill T

    Video: Millions Missing Canada impromptu protest at Meet&Greet confronting Health Minister

    Millions Missing Canada advocating with Health Minister Jane Philpott at Meet & Greet in Toronto today! Well done everyone! Scott Simpson speaking with Minister Philpott at approx. 10:30
  6. N

    OpenDemocracy article on severe ME

    Just before Christmas I had an article on severe ME published on the website openDemocracy. "No terminology exists to describe lives blighted by the severest forms of the illness. Confined to their bed, and often tube-fed, those afflicted are so intolerant of any light or sound that even a...
  7. Seanko

    Walk for ME 2016

    During ME Awareness Week 9-16 May 2016, patients, friends and family of ME sufferers will be doing a sponsored walk, run or swim to raise money for the British ME Research charities Invest in ME & ME Research UK under the banner of Walk for ME 2016 Walk for ME has had walkers, runners and...

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