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advocacy

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  1. Solstice
    Thread

    Sudden realisation(trigger warning)

    The Ed Yong piece has been going round my head for a while now as it gave me a new perspective on my disease too. I think it's safe to say that...
    Thread by: Solstice, Aug 25, 2023, 47 replies, in forum: General ME/CFS discussion
  2. ME/CFS Skeptic
    Thread

    ME/CFS advocacy successes in Germany

    There have been quite a lot of improvements in the ME/CFS situation in Germany. There are now investment in research, the IQWiG report, political...
    Thread by: ME/CFS Skeptic, May 20, 2023, 9 replies, in forum: General Advocacy Discussions
  3. ahimsa
    Thread

    USA: Ask your Members of Congress to support the CARE for Long COVID Act! (from Solve M.E.)

    From Solve M.E. - a call to action for Advocacy Week: "Ask your Members of Congress to support the CARE for Long COVID Act!"...
    Thread by: ahimsa, Apr 17, 2023, 1 replies, in forum: Advocacy Action Alerts
  4. ahimsa
    Thread

    UK: Campaign called #MPDoYourJobForME

    I saw this post by @MEFoggyDog on Mastodon so I thought I'd share. This same hashtag - #MPDoYourJobForME - is also being used on twitter so you...
    Thread by: ahimsa, Mar 22, 2023, 0 replies, in forum: Advocacy Projects and Campaigns
  5. Andy
    Thread

    USA: News from Solve ME

    The Solve Newsletter thread has been merged with this thread. Spring 2018 Contents: Page 2 - SMCI This Quarter: A Summary of Our Work Page 5 -...
    Thread by: Andy, May 18, 2018, 142 replies, in forum: News from organisations
  6. cassava7
    Thread

    Opposition to exercise therapy & psychotherapy for fibromyalgia?

    The ME/CFS patient community has long worked on debunking graded exercise and CBT as treatments for the disease but I am not aware of similar...
    Thread by: cassava7, Oct 13, 2022, 3 replies, in forum: Psychosomatic theories and treatments discussions
  7. ahimsa
    Thread

    USA: 2022 Sep 19: Long COVID, ME/CFS Patients Protest in Front of White House

    Threads about different articles have been merged Article about today's protest at the White House from MedPage Today: "Long COVID, ME/CFS...
    Thread by: ahimsa, Sep 20, 2022, 18 replies, in forum: General ME/CFS news
  8. ahimsa
    Thread

    USA - 2022 Millions Missing protest: Online training session for those taking action from home

    Reminder for anyone who wants to help out with the 2022 Millions Missing protest scheduled for Monday, September 19. There's an online training...
    Thread by: ahimsa, Sep 10, 2022, 21 replies, in forum: Advocacy Action Alerts
  9. Phoebe
    Thread

    ‘descriptions: a patient-led description of ME, composed from the words of people with ME’, a found poem by Alec Finlay

    In November last year Action for ME invited people with ME to complete a questionnaire describing their experience of ME. The responses were...
    Thread by: Phoebe, May 20, 2022, 0 replies, in forum: Advocacy Projects and Campaigns
  10. Tom Kindlon
    Thread

    A popular YouTuber has made a video about an ME island created by Lisa, The Unlikely Gamer.

    A popular YouTuber (149k subscribers), Lex Play, has made a video about an ME island created by Lisa, The Unlikely Gamer. It can be watched here:...
    Thread by: Tom Kindlon, May 13, 2022, 2 replies, in forum: General ME/CFS news
  11. rvallee
    Thread

    Quotes about the BPS model of ME/CFS as a mistake not to repeat with Long Covid

    Bit of a mouthful thread title, but I have seen many references in the last few years that explicitly blame the biopsychosocial model of ME/CFS as...
    Thread by: rvallee, Apr 1, 2022, 4 replies, in forum: Long Covid news
  12. InitialConditions
    Thread

    The Most Underfunded Disease at the NIH (Advocacy video by Winston Blick)

    [MEDIA] Great video - one of the best I've seen. Winston has real skill. Maybe we can use it to our advantage. I'd like to see a UK version.
    Thread by: InitialConditions, Feb 3, 2022, 4 replies, in forum: General Advocacy Discussions
  13. Noir
    Thread

    UK: Long Covid protests calling for more research, Wed 9th March 2022

    Someone calling themselves Long Covid Patient Action Group UK on Twitter has announced protests calling for more research into long covid outside...
    Thread by: Noir, Feb 2, 2022, 9 replies, in forum: Advocacy Action Alerts
  14. leokitten
    Thread

    Politico: He Was Given 6 Months to Live. Then He Changed D.C. (Brian Wallach ALS)

    He Was Given 6 Months to Live. Then He Changed D.C. Brian Wallach was diagnosed with ALS the day his daughter came home from the hospital. In the...
    Thread by: leokitten, Jan 18, 2022, 14 replies, in forum: General Advocacy Discussions
  15. Wyva
    Thread

    Physician's Weekly: Why Patient Advocacy Is Important Without Being Hated, 2018, Girgis

    As you can see, this is not a new article but I thought it was worth sharing. Written by a family physician. Not really about ME/CFS but this...
    Thread by: Wyva, Jan 11, 2022, 3 replies, in forum: General Advocacy Discussions
  16. rvallee
    Thread

    Requests for information/papers/sources/documentation

    I've been seeing many lately and thought a thread could be useful. Either coming from Long Covid advocates or professionals interested in learning...
    Thread by: rvallee, Jun 10, 2021, 22 replies, in forum: Advocacy Projects and Campaigns
  17. Andy
    Thread

    Endorse the European ME Coalition's idea at The [2021] Conference on the Future of Europe

    What is the Conference on the Future of Europe? The Conference on the Future of Europe is a unique and timely opportunity for European citizens...
    Thread by: Andy, Apr 26, 2021, 10 replies, in forum: Advocacy Action Alerts
  18. Roy S
    Thread

    USA: PBS NewsHour segment April 2021 features disability advocate Rivka Solomon discussing ME/cfs and long COVID

    Rivka on Twitter: "Tonight, the @PBS @NewsHour w/ @JudyWoodruff airs a piece on #MEcfs. Thx to an amazing @MassMECFS volunteer for this graphic....
    Thread by: Roy S, Apr 22, 2021, 16 replies, in forum: General ME/CFS news
  19. Kalliope
    Thread

    YouTube: An Existence Project - Paper Stop motion Animation About ME/CFS by Inga Topolnicki

    This is a 6 minute film created by Inga Topolnicki. I thought it was moving and impressively well made! From the description: An Existence...
    Thread by: Kalliope, Apr 3, 2021, 6 replies, in forum: General ME/CFS news
  20. Andy
    Thread

    Action for ME: UK-wide self-advocacy online workshop, Wednesday 10 March from 2 - 4pm.

    Following the success of our recent advocacy workshops for people in Bath and North East Somerset, we’re pleased to announce that we will repeat...
    Thread by: Andy, Feb 11, 2021, 0 replies, in forum: Advocacy Projects and Campaigns
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