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  1. Noir
    Post

    Gamers for M.E. - Play video games and support OMF

    Edobean is now currently live on Twitch doing a charity fundraiser for OMF. [IMG] She will do multiple live streams that will go on between April...
    Post by: Noir, Apr 15, 2022 in forum: Fundraising
  2. Noir
    Post

    Gamers for M.E. - Play video games and support OMF

    There's a 24 hour charity live stream for Open Medicine Foundation in progress now on Twitch. $911 raised so far, with 11 hours to go! Check it...
    Post by: Noir, Apr 10, 2022 in forum: Fundraising
  3. Noir
    Thread

    Australia: Petition: Call for Change for ME patients Australia

    "We are looking to submit this Australian version of the Call-For-Change petition to the current Australian Disability Royal Commission and...
    Thread by: Noir, Mar 14, 2022, 3 replies, in forum: Petitions
  4. Noir
    Post

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

    First media coverage by STV News in Scotland: https://news.stv.tv/west-central/campaigners-call-for-urgent-targeted-research-into-long-covid...
    Post by: Noir, Mar 10, 2022 in forum: Advocacy Action Alerts
  5. Noir
    Post

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

    @winterwren Here's MEAction's MillionsMissing plans for 2022: https://millionsmissing.meaction.net/ In short, self-celebration in May and...
    Post by: Noir, Mar 9, 2022 in forum: Advocacy Action Alerts
  6. Noir
    Post

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

    Yes, it's all very similar to a certain other (or not so other) illness. There was media present in Scotland, but I haven't seen any articles...
    Post by: Noir, Mar 9, 2022 in forum: Advocacy Action Alerts
  7. Noir
    Post

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

    Today is the day for Twitter protest: [MEDIA] Use the hashtag #researchlongcovid for more biomedical research into long covid and ME/cfs. Feel...
    Post by: Noir, Mar 9, 2022 in forum: Advocacy Action Alerts
  8. Noir
    Post

    Well-known, famous people with Covid-19 and Long Covid

    "But otherwise, the Holding Back The Years singer seemed in great health as he performed to a packed crowd at London’s O2 Arena on Wednesday...
    Post by: Noir, Mar 4, 2022 in forum: Long Covid news
  9. Noir
    Post

    (Coming) thesis: Tarjei Tørre Asprusten "Diagnosis of Chronic Fatigue Syndrome in Adolescents" - 2022

    It's not the first time Asprusten does something on ME/cfs:...
    Post by: Noir, Feb 22, 2022 in forum: Psychosomatic research - ME/CFS and Long Covid
  10. Noir
    Post

    Cognitive Behavioral Therapy Improves Physical Function & Fatigue in Mild & Moderate CFS: A Consecutive RCT, 2021, Gotaas et al

    "Funny" how these guys co-ordinate their media strategies, but are ready to whine about patient activism if we even say a word, not to forget if...
    Post by: Noir, Feb 11, 2022 in forum: Psychosomatic research - ME/CFS and Long Covid
  11. Noir
    Post

    Fundraiser for a study at the University Hospital Erlangen with the drug BC007 for ME/CFS patients

    It seems a final decision will be made on April 5th. Very good news, though!
    Post by: Noir, Feb 10, 2022 in forum: Fundraising
  12. Noir
    Post

    Lightning Process study in Norway - Given Ethics Approval February 2022

    There's more info in the application pdf I linked in my other post, but it's in Norwegian, and I don't think Google Translate translate whole...
    Post by: Noir, Feb 8, 2022 in forum: Psychosomatic research - ME/CFS and Long Covid
  13. Noir
    Post

    Lightning Process study in Norway - Given Ethics Approval February 2022

    The LP-study by Kennair and Landmark have unfortunately gotten a new ethical approval from REK (the Regional Ethics Committee):...
    Post by: Noir, Feb 8, 2022 in forum: Psychosomatic research - ME/CFS and Long Covid
  14. Noir
    Post

    News from Scandinavia

    Nina Steinkopf has now written a blog post about yesterday's newspaper drama in Norway. English google-translated version:...
    Post by: Noir, Feb 4, 2022 in forum: Regional news
  15. Noir
    Post

    News from Scandinavia

    Dagbladet has worked their way down towards being one of the most tabloid of the tabloids, if not THE most tabloid newspaper in Norway, over the...
    Post by: Noir, Feb 3, 2022 in forum: Regional news
  16. 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
  17. Noir
    Post

    Fundraiser for a study at the University Hospital Erlangen with the drug BC007 for ME/CFS patients

    The fundraising campaign have raised 132 000 Euros so far, or 16,5% of what's the minimum goal of 800 000 euros. You can view the progress via the...
    Post by: Noir, Feb 2, 2022 in forum: Fundraising
  18. Noir
    Post

    2022 Petition: Denmark must follow international evidence-based guidelines for ME (anyone can sign)

    It looks good now, @Forestvon. The text you pasted means "e-mail subscriptions are now turned off". "Annuler" means cancel, so not necessary, eh.
    Post by: Noir, Jan 28, 2022 in forum: Petitions
  19. Noir
    Post

    2022 Petition: Denmark must follow international evidence-based guidelines for ME (anyone can sign)

    @Forestvon, if you want to unsubscribe you need to click on the "afmeld" link (which means unsubscribe) in the part of the text that reads like...
    Post by: Noir, Jan 27, 2022 in forum: Petitions
  20. Noir
    Post

    2022 Petition: Denmark must follow international evidence-based guidelines for ME (anyone can sign)

    I got one in the regular folder, but the verification email could end up in the spam folder. If it's not even there I don't know what's up.
    Post by: Noir, Jan 27, 2022 in forum: Petitions
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