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advocacy

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  1. 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
  2. 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
  3. 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
  4. MEMarge
    Thread

    Reality of ME. How would you get this across (briefly) using words or graphics?

    For people who have no idea what ME is like, (for example most doctors and healthcare workers) how would you express it briefly? You could use:...
    Thread by: MEMarge, Feb 4, 2021, 25 replies, in forum: General Advocacy Discussions
  5. ahimsa
    Thread

    Solve M.E. Presents: Legislative Cafe Chat on Thursday, Jan. 21

    I found the following announcement at the bottom of this page -...
    Thread by: ahimsa, Jan 16, 2021, 2 replies, in forum: General Advocacy Discussions
  6. ME/CFS Skeptic
    Thread

    News from France

    This thread is intended to get an overview of ME/CFS news in France.
    Thread by: ME/CFS Skeptic, Dec 7, 2020, 65 replies, in forum: Regional news
  7. ME/CFS Skeptic
    Thread

    Progress is happening: an overview of positive developments in the ME/CFS community - blog post by Michiel & Evelien

    Evelien and I recently made an overview of ongoing or planned clinical trials for ME/CFS. We concluded that there are few decent treatment trials...
    Thread by: ME/CFS Skeptic, Nov 2, 2020, 2 replies, in forum: General Advocacy Discussions
  8. Helene
    Thread

    My family of MEEPS and thoughts on COVID long-haulers

    A brave & thoughtful story my daughter Nadine wrote about her recent diagnosis with ME, my family's history with the disease, COVID long-haulers...
    Thread by: Helene, Oct 17, 2020, 31 replies, in forum: Epidemics (including Covid-19, not Long Covid)
  9. Sarah94
    Thread

    Derren Brown

    Recently I watched two Derren Brown shows, 'Miracle' and 'Miracles for Sale'. They're mostly focused on exposing how "faith healing" is performed,...
    Thread by: Sarah94, Oct 4, 2020, 2 replies, in forum: General Advocacy Discussions
  10. ahimsa
    Thread

    Planned documentary - Relevium, on Dr Bateman's work on ME/CFS and Fibromyalgia

    Someone posted a link on twitter about a planned documentary called Relevium. https://glematiroad.com/relevium-documentary I don't know...
    Thread by: ahimsa, Sep 23, 2020, 7 replies, in forum: General ME/CFS news
  11. andypants
    Thread

    Donations for Advocacy or Research - What is Your Preference?

    I donate a monthly sum to the national ME Association and/or their research fund. Every now and then I additionally support other fundraising...
    Thread by: andypants, Aug 1, 2020, 2 replies, in forum: General Advocacy Discussions
  12. Andy
    Thread

    Research update: The relation between ME/CFS disease burden and research funding in the USA, 2020, Mirin et al

    BACKGROUND: Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) is a debilitating, chronic, multisystem disease that affects an...
    Thread by: Andy, Jun 23, 2020, 7 replies, in forum: Psychosomatic research - ME/CFS and Long Covid
  13. mango
    Thread

    ‘Help Holger now’ video about a Swedish man with very severe ME

    Moderator note posts below have been moved from: https://www.s4me.info/threads/news-from-scandinavia.647/ "Help Holger now!" 13 minutes long...
    Thread by: mango, Jun 8, 2020, 86 replies, in forum: General ME/CFS news
  14. Emily Taylor
    Thread

    ME/CFS Advocacy Day is TODAY!

    [IMG] Today is ME/CFS Advocacy Day! Not participating in meetings? If you have a few minutes throughout the day, you can still support and...
    Thread by: Emily Taylor, Apr 21, 2020, 1 replies, in forum: Advocacy Action Alerts
  15. Andy
    Thread

    UK: Workshop: "What big research questions do people with M.E., their carers and clinicians want answered?", 10th March 2020

    What big research questions do people with M.E., their carers and clinicians want answered? You are invited to a free workshop on Tuesday 10...
    Thread by: Andy, Feb 20, 2020, 14 replies, in forum: Advocacy Projects and Campaigns
  16. Sly Saint
    Thread

    Blog: What have tea and cake got to do with M.E? by Anna Redshaw Feb 2020

    In my experience it can be difficult to get non-sufferers to properly engage with M.E. advocacy efforts. There can be many reasons for this....
    Thread by: Sly Saint, Feb 14, 2020, 0 replies, in forum: General ME/CFS news
  17. ahimsa
    Thread

    #MEAction UK: "Take ME Seriously" project needs comments & signatures to send to NICE

    #MEAction UK has a new project called "Take ME Seriously" Update: Anyone can join in this advocacy action. It is not just for UK residents. They...
    Thread by: ahimsa, Feb 7, 2020, 14 replies, in forum: Advocacy Action Alerts
  18. FMMM1
    Thread

    EU Petition 2019 - opportunity to lobby for funding for ME research

    A friend on mine (Evelien) has succeeded in getting a petition on ME accepted by the EU Parliament [link below*]. The petition highlights the...
    Thread by: FMMM1, Jul 12, 2019, 149 replies, in forum: Petitions
  19. ahimsa
    Thread

    USA: Register now for ME/CFS Advocacy Week and DC Lobby Day 2020

    The Solve M.E. group is organizing another ME/CFS Advocacy Week this year for April 19 – 26, 2020. ME/CFS Advocacy week returns from April 19 –...
    Thread by: ahimsa, Jan 17, 2020, 0 replies, in forum: Advocacy Projects and Campaigns
  20. ahimsa
    Thread

    MEAction: NIH Receives Surprise Holiday Gift from ME Community

    MEAction has an article reporting on their "Cards to Koroshetz" campaign. They asked folks to send holiday cards to Dr. Koroshetz, Director of...
    Thread by: ahimsa, Jan 11, 2020, 0 replies, in forum: Advocacy Projects and Campaigns
Showing results 21 to 40 of 111
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