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advocacy

Page 4 of 6
  1. Estherbot
    Thread

    ACT UP documentary, United in Anger, 2012

    You may recall when ME Action Network started there were mentions of ACT UP. This was the campaign in the 1980s by the LGBT community to get more...
    Thread by: Estherbot, Apr 17, 2019, 10 replies, in forum: General Advocacy Discussions
  2. Alison Orr
    Thread

    Open Letter to Secretary Azar and Calls to Action (USA)

    I hope I’m not duplicating a thread - I’ve searched but can’t find anything on this subject. “On April 9, 2019, ME advocates Eileen Holderman and...
    Thread by: Alison Orr, Apr 15, 2019, 1 replies, in forum: ME/CFS research news
  3. MaximilianKohler
    Thread

    Who to contact to get an FMT clinical trial with high quality donors? Poor 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:...
    Thread by: MaximilianKohler, Apr 6, 2019, 37 replies, in forum: Advocacy Projects and Campaigns
  4. ahimsa
    Thread

    USA: ME/CFS Advocacy Week - Call or email your senators

    Most of us are not able to go to Washington, DC for this advocacy week. But there are still ways to make your voices heard! Today I called both...
    Thread by: ahimsa, Apr 3, 2019, 6 replies, in forum: Advocacy Action Alerts
  5. Andy
    Thread

    MEAction: Our Community will Not Suffer Stigma and Distortion

    Last week was a difficult time for the ME community as we watched a few journalists deride and dismiss the medical concerns of an entire patient...
    Thread by: Andy, Mar 23, 2019, 18 replies, in forum: General Advocacy Discussions
  6. Andy
    Thread

    US Petition: Funding dedicated to the research of Chronic Fatigue Syndrome 'ME/CFS' to develop a diagnostic test, treatment, and Cure

    Spotted this on social media. HMD has noted a “paucity of research” on ME/CFS and that “more research is essential”; only 1% of the needed funding...
    Thread by: Andy, Jan 17, 2019, 1 replies, in forum: Petitions
  7. Andy
    Thread

    Are You a Young Person Affected by ME? How do you Visualize Health Equity? Join a National Contest

    The U.S. National Academy of Medicine (NAM) is holding a contest for young people (ages 5 to 26) to submit art, music, writing, videos, dance,...
    Thread by: Andy, Jan 12, 2019, 0 replies, in forum: Advocacy Projects and Campaigns
  8. Andy
    Thread

    Blog: Changing the narrative #1: exploring a new approach to strategic communications in the ME community, by Valerie Eliot Smith

    Introduction I started writing this blog in 2012. For several years since then, I have kept starting drafts on a particular topic, only to then...
    Thread by: Andy, Jan 7, 2019, 181 replies, in forum: Advocacy Projects and Campaigns
  9. Andy
    Thread

    Video: Stuart Murdoch: ME/CFS update, 27 December 2018

    Me walking and talking in a rambly way about my recent progress with ME/CFS, treatment and medication. [MEDIA] I've not watched it so don't know...
    Thread by: Andy, Jan 4, 2019, 15 replies, in forum: Advocacy Projects and Campaigns
  10. Andy
    Thread

    A Life Hidden - Blog posts by Naomi Whittingham

    Moderator note: We've merged a number of threads to collect Naomi's blog posts into one thread. An article originally printed December 2016 but...
    Thread by: Andy, Nov 22, 2017, 154 replies, in forum: General ME/CFS news
  11. Andy
    Thread

    Walk a mile in my shoes: trying on CWTCH's chronic illness symptom suit

    This was me wearing the symptom suit, an outfit designed by members of the Pembrokeshire Charity CWTCH. I was taking on the ‘walk a mile in my...
    Thread by: Andy, Dec 10, 2018, 4 replies, in forum: Advocacy Projects and Campaigns
  12. Andy
    Thread

    MEAction: " All I want for Christmas is #ScienceNotStigma"

    This Christmas, millions will be missing from parties and celebrations, because of the severity of ME. Yet the National Institute of Health and...
    Thread by: Andy, Dec 9, 2018, 13 replies, in forum: Advocacy Action Alerts
  13. Andy
    Thread

    Blog: Super Pooped: "Cause and Effect piece" [comic illustrating life with ME/CFS]

    I've been sitting on this one for a while so it's amazing that I finally get to show it to you! My piece for Cause and Effect magazine. Amnah, the...
    Thread by: Andy, Dec 8, 2018, 8 replies, in forum: General Advocacy Discussions
  14. Snowdrop
    Thread

    Canadian Medical Assoc -- Patient Voice

    I'm posting this in case there are Cdn advocates here who are not aware of this group and who might find connecting with this group of possible...
    Thread by: Snowdrop, Dec 6, 2018, 3 replies, in forum: General Advocacy Discussions
  15. JaimeS
    Thread

    #MEAction ideas for Giving Tuesday

    A few things have begun to aggregate, so I figured I would start a new thread and post them here. First, #MEAction's general article on how to...
    Thread by: JaimeS, Nov 27, 2018, 0 replies, in forum: Fundraising
  16. Sly Saint
    Thread

    Nov 29th #YoungHeartsDay - for #KidswithME

    [MEDIA] just wondering if we could do something to show our support?
    Thread by: Sly Saint, Nov 26, 2018, 16 replies, in forum: Advocacy Action Alerts
  17. Kalliope
    Thread

    #MEAction: Fall advocacy round-up - A season of protest and petition

    #MEAction: Fall advocacy round-up - a season of protest and petition An extensive summary of this autumn's advocacy work around the world. Quite...
    Thread by: Kalliope, Nov 16, 2018, 0 replies, in forum: General ME/CFS news
  18. ahimsa
    Thread

    US action: Ask your health care professional (doctor, nurse, therapist, etc) to watch Unrest online for credit

    Here's a relatively easy advocacy action for patients in the USA: Ask your health care professional to watch Unrest online and get continuing...
    Thread by: ahimsa, Nov 1, 2018, 8 replies, in forum: Advocacy Projects and Campaigns
  19. Andy
    Thread

    Dialogues for a neglected illness - videos on experiences of people with ME (funded by Wellcome Foundation)

    I am delighted to announce a new ME project, Dialogues for a neglected illness, which Josh Biggs and myself, Natalie Boulton, will be working on,...
    Thread by: Andy, Oct 15, 2018, 242 replies, in forum: Advocacy Projects and Campaigns
  20. Amy101
    Thread

    Merryn Crofts - our last family statement

    Hi, I apologise if this is the wrong area to post this but this is our last formal statement as a family. I’m unsure how to get it to come up on...
    Thread by: Amy101, Aug 25, 2018, 20 replies, in forum: General Advocacy Discussions
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