snabelen.no

Tom KindlonThe pillow writers group has published a new collection called Near-Life Experiences: The Pillow Writers Anthology, Issue 2. This ebook is available on Amazon. All proceeds go to <a href="https://disabled.social/tags/MEAction" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEAction</a>.<a href="https://www.s4me.info/threads/meaction-usa-near-life-experiences-the-pillow-writers-anthology.46166/" rel="nofollow noopener" translate="no" target="_blank">https://www.s4me.info/threads/meaction-usa-near-life-experiences-the-pillow-writers-anthology.46166/</a><a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#PwME</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> <a href="https://fedigroups.social/@mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@mecfs</a>

ahimsaFrom <a href="https://disabled.social/tags/MEAction" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEAction</a> "Are you a medical provider in need of a concise but helpful CME?Are you a patient wishing your clinicians knew more about ME, aka ME/CFS? We have a CME for you but it is only available until Oct 1st"Contact your doctor to let them know about this CME (continuing medical education), sample language with links here: <a href="https://docs.google.com/document/d/1wPOTjUBdq1A8_0Ty3us32twrtOJx1D56gGi7MosRpBg/edit?tab=t.0" rel="nofollow noopener" translate="no" target="_blank">https://docs.google.com/document/d/1wPOTjUBdq1A8_0Ty3us32twrtOJx1D56gGi7MosRpBg/edit?tab=t.0</a>Link to document and CME: <a href="https://millionsmissing.meaction.net/treatme" rel="nofollow noopener" translate="no" target="_blank">https://millionsmissing.meaction.net/treatme</a><a href="https://fedigroups.social/@mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@mecfs</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#PwME</a> <a href="https://disabled.social/tags/HealthCare" class="mention hashtag" rel="nofollow noopener" target="_blank">#HealthCare</a> <a href="https://disabled.social/tags/MedicalEducation" class="mention hashtag" rel="nofollow noopener" target="_blank">#MedicalEducation</a> <a href="https://disabled.social/tags/CME" class="mention hashtag" rel="nofollow noopener" target="_blank">#CME</a> <a href="https://disabled.social/tags/MedEd" class="mention hashtag" rel="nofollow noopener" target="_blank">#MedEd</a>

ahimsaThe second Pillow Writers Anthology is now available on Amazon (I don't think there's another source for this book, sorry)<a href="https://www.amazon.com/dp/B0FQPJVC1G?ref=cm_sw_r_ffobk_cp_ud_dp_ZN0A62NYR4YH9Y70GPB1" rel="nofollow noopener" translate="no" target="_blank">https://www.amazon.com/dp/B0FQPJVC1G?ref=cm_sw_r_ffobk_cp_ud_dp_ZN0A62NYR4YH9Y70GPB1</a>All proceeds go to the <a href="https://disabled.social/tags/MEAction" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEAction</a> group.There will be a Pillow Writers’ Salon Thursday, September 18, 11 am Pacific / 2 pm Eastern / 7 pm UKMore details here: <a href="https://us06web.zoom.us/meeting/register/VAe64FpySkyaXoPLaZ7wdw#/registration" rel="nofollow noopener" translate="no" target="_blank">https://us06web.zoom.us/meeting/register/VAe64FpySkyaXoPLaZ7wdw#/registration</a><a href="https://fedigroups.social/@mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@mecfs</a> <a href="https://fedigroups.social/@longcovid" class="u-url mention" rel="nofollow noopener" target="_blank">@longcovid</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#LongCovid</a> <a href="https://disabled.social/tags/ChronicIllness" class="mention hashtag" rel="nofollow noopener" target="_blank">#ChronicIllness</a> <a href="https://disabled.social/tags/Writing" class="mention hashtag" rel="nofollow noopener" target="_blank">#Writing</a> <a href="https://disabled.social/tags/Poetry" class="mention hashtag" rel="nofollow noopener" target="_blank">#Poetry</a> <a href="https://disabled.social/tags/Stories" class="mention hashtag" rel="nofollow noopener" target="_blank">#Stories</a> <a href="https://disabled.social/tags/Books" class="mention hashtag" rel="nofollow noopener" target="_blank">#Books</a> <a href="https://disabled.social/tags/Bookstodon" class="mention hashtag" rel="nofollow noopener" target="_blank">#Bookstodon</a>

ahimsa<a href="https://forall.social/@whn" class="u-url mention" rel="nofollow noopener" target="_blank">@whn</a> Thank you for mentioning Long Covid and ME/CFS patients! We definitely can benefit from telehealth! (video doctor appointments)I think essential telehealth provisions are set to expire on Sept. 30. <a href="https://disabled.social/tags/MEAction" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEAction</a> has information on how to take action (email or call your government reps) here:<a href="https://www.meactions.org/telehealth" rel="nofollow noopener" translate="no" target="_blank">https://www.meactions.org/telehealth</a><a href="https://disabled.social/tags/USPol" class="mention hashtag" rel="nofollow noopener" target="_blank">#USPol</a> <a href="https://disabled.social/tags/Telehealth" class="mention hashtag" rel="nofollow noopener" target="_blank">#Telehealth</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#LongCovid</a> <a href="https://disabled.social/tags/ChronicIllness" class="mention hashtag" rel="nofollow noopener" target="_blank">#ChronicIllness</a>

ahimsaFrom <a href="https://disabled.social/tags/MEAction" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEAction</a>:"We’re excited to announce the official launch of the Minnesota Home Help Navigation program, a new pilot program created by <a href="https://disabled.social/tags/MEAction" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEAction</a> & funded by a grant from the Minnesota Department of Health’s Long COVID Program."More info here: <a href="https://www.meartistsproject.com/post/guiding-minnesotans-living-with-long-covid-me-cfs-to-secure-in-home-help" rel="nofollow noopener" translate="no" target="_blank">https://www.meartistsproject.com/post/guiding-minnesotans-living-with-long-covid-me-cfs-to-secure-in-home-help</a>Home Help site: <a href="https://help.meaction.net/" rel="nofollow noopener" translate="no" target="_blank">https://help.meaction.net/</a><a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#PwME</a> <a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#LongCovid</a> <a href="https://disabled.social/tags/PwLC" class="mention hashtag" rel="nofollow noopener" target="_blank">#PwLC</a> <a href="https://disabled.social/tags/ChronicIllness" class="mention hashtag" rel="nofollow noopener" target="_blank">#ChronicIllness</a> <a href="https://disabled.social/tags/Minnesota" class="mention hashtag" rel="nofollow noopener" target="_blank">#Minnesota</a> <a href="https://disabled.social/tags/HomeCare" class="mention hashtag" rel="nofollow noopener" target="_blank">#HomeCare</a>

David TullerThree Blogs–Julie Rehmeyer on Beth Mazur’s Death; Whitney Dafoe on Real Life; Elke Hausmann on Exercise and “The Salt Path”By David Tuller, DrPHTwo years ago, Beth Mazur, who co-founded <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://trialbyerror.org/tag/meaction/" target="_blank">#MEAction</a> and spent years advocating for better care and more research, committed suicide during a stay with her close friend and fellow person with ME, Julie Rehmeyer. It is hard to imagine what feels unimaginable—the shock and pain of finding the body of someone you love in their room in your home under such circumstance.(I posted Beth’s obituary <a href="https://virology.ws/2024/01/12/trial-by-error-obituary-for-beth-mazur/" rel="nofollow noopener" target="_blank">here</a>. I knew her only slightly. When I first started crowdfunding, she had helped me enormously by promoting my appeal to MEAction’s audience, and once stayed at my San Francisco flat for a couple of days.)I’ve known Julie for more than ten years, although we’ve never met in person. Back in 2017, she and I co-wrote an opinion piece about ME/CFS, with a focus on the PACE trial, for The New York Times. She has <a href="https://bit.ly/through_the_shadowlands" rel="nofollow noopener" target="_blank">published a memoir</a>, Through the Shadowlands: A Science Writer’s Odyssey into an Illness Science Doesn’t Understand, and has recently launched <a href="https://substack.com/@jrehmeyer" rel="nofollow noopener" target="_blank">a Substack newsletter</a> focused not just on chronic illness but on—wait for it!—the energy transition in New Mexico.However, <a href="https://substack.com/@jrehmeyer/p-171077539" rel="nofollow noopener" target="_blank">the first post</a>, called “Holding What Holds No Meaning,” is focused on Beth’s death, and it is a heartbreaker. Here’s the opening:“Almost two years ago, on the winter solstice, I was given the most terrible honor of my life: My dear friend Beth Mazur chose to end her life while visiting me. I didn’t agree to this, but it happened.“Beth was a <a href="https://virology.ws/2024/01/12/trial-by-error-obituary-for-beth-mazur/" rel="nofollow noopener" target="_blank">towering figure</a> in the community surrounding myalgic encephalomyelitis (also known as ME or ME/CFS). If you’re in the ME or long Covid communities, she’s profoundly impacted your life, even if you didn’t know her.“She spent the last two weeks of her life with me, and it was marked by ordinary joys that felt extraordinary after so much struggle for both of us. We soaked in a hot tub at a Japanese spa; went to the Santa Fe Plaza to see the Christmas lights; cuddled with my animals; spent hours with her head in my lap as I rubbed her shoulders and we talked quietly. She was in the middle of so many projects, every day on the phone with patients, advocates, and researchers. Even as she carried enormous suffering, she carried others too.”**********I am always amazed to read Whitney Dafoe’s blog posts. I mean, I’m amazed just by the fact of them, that he is able to write such cogent and thoughtful pieces after all he’s been through in his many years of severe illness. Each time I see a new post, I hope he hasn’t crashed too badly from the cognitive effort involved.Whitney’s dad, <a href="https://med.stanford.edu/profiles/ronald-davis" rel="nofollow noopener" target="_blank">well-known Stanford geneticist Ronald Davis</a>, has become a leading ME/CFS researcher, and his mom, psychologist Janet Dafoe, is an ardent patient advocate. The family’s story was the subject of <a href="https://www.amazon.com/Puzzle-Solver-Scientists-Desperate-Illness/dp/0316492507" rel="nofollow noopener" target="_blank">a 2021 book</a>, The Puzzle Solver: A Scientist’s Desperate Quest to Cure the Illness that Stole His Son, by Tracy White (with Ronald Davis).Whitney recently posted <a href="https://www.whitneydafoe.com/mecfs/?post=remembering-what-real-life-is-like" rel="nofollow noopener" target="_blank">a blog</a> called “Remembering What Real Life Is Like,” about his experience of having to go to the hospital to get his Jtube replaced—a semi-regular occurrence. In the piece, he writes about what he observes during these trips, and how it makes him even more acutely aware of his own limitations.I assume these reflections will resonate strongly with those in similar situations. And his words will also help others understand and empathize with how things look from the perspective of those who have to anticipate payback from each action or activity.Here’s an excerpt:“I’ll not only be outside, but I’ll also see healthy people wasting energy, bubbling and bouncing around in a way that looks to me like a hoard of rabid ants, chattering away, literally just throwing energy away like it is worthless. Because to them, it is worthless – it has no value because they have rather limitless energy and even in the weakest, sickest moments of their entire lives, they have never experienced the energy limitations ME/CFS imposes on a person.“And I will be exposed to that healthy world where everyone feels fine and has plans for the future and goals and a full life. Where they live a full day and go to sleep knowing tomorrow will be another full day of work and play and love and fresh air and sun and endless surprise unknowns of all sorts.”**********I’d never heard of <a href="https://en.wikipedia.org/wiki/The_Salt_Path" rel="nofollow noopener" target="_blank">The Salt Path</a>, an apparently inspirational 2018 memoir about disease and recovery by a British couple that was turned into an apparently similarly inspirational movie. The couple attributed the husband’s improved condition to an extended hike—i.e. exercise. (A <a href="https://observer.co.uk/news/national/article/the-real-salt-path-how-the-couple-behind-a-bestseller-left-a-trail-of-debt-and-deceit" rel="nofollow noopener" target="_blank">recent expose</a>, published in The Observer, suggested that the couple’s story is, more or less, a pack of lies.)Whatever. The scandal over the issue prompted <a href="https://bjgplife.com/what-does-the-fallout-from-the-salt-path-saga-tell-us-about-our-societys-ideas-about-chronic-illness-and-exercise/?fbclid=IwZXh0bgNhZW0CMTEAAR7cYU9VbS_LIy_DXevfXPNLYFnnkaBk2uqp0kvrcypqMN4OIjr-OABX4j69tw_aem_KpIYhnkzPkgertpWhWkwjw" rel="nofollow noopener" target="_blank">an interesting blog</a> from Elke Hausmann, a GP with Long COVID who is currently not due to Long COVID. The post appeared in BJGP Life, a site for opinion and commentary associated with the <a href="https://bjgp.org/" rel="nofollow noopener" target="_blank">British Journal of General Practice</a>. Her blog is titled “What does the fallout from the ‘Salt Path’ saga tell us about our society’s ideas about chronic illness and exercise?”  Here’s a key passage about the impact, in Housmann’s view, of the exercise-is-always-good mentality:“Our societal bias that exercise can only ever heal, never harm, is incredibly pervasive. It is playing out right now in how we understand and discuss Long Covid, and as we have done in relation to ME for decades. I think one of the main reasons for why we are no further in finding a cure for those conditions is that so many don’t believe that exercise can ever harm…“This is a narrative that the political establishment, presiding over unprecedented levels of chronic illness, disability, economic inactivity and benefit bills, will welcome: the suggestion that ill people can get better, if only they tried hard enough. It places the onus onto the sick individual to get better, and away from the expectation that in a civilised society, the collective should support ill people (who often don’t get better, no matter how hard they try).”(<a href="https://virology.ws/2025/08/28/trial-by-error-three-blog-posts-julie-rehmeyer-on-beth-mazurs-death-whitney-dafoe-on-real-life-elke-hausmann-on-exercise-and-the-salt-path/" rel="nofollow noopener" target="_blank">View the original post at virology.ws</a>)<a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://trialbyerror.org/tag/meaction/" target="_blank">#MEAction</a>

Brian VastagIn memoriam

ahimsaFrom <a href="https://disabled.social/tags/MEAction" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEAction</a> Severe ME Artists Project, 2025:<a href="https://www.meartistsproject.com/severe-me-artists-project-2025" rel="nofollow noopener" translate="no" target="_blank">https://www.meartistsproject.com/severe-me-artists-project-2025</a>Over 100 art pieces were submitted by severe ME patients. The website includes a video compilation of the artwork.August 8th was chosen to honor Sophia Mirza, a severe ME patient who died of the disease. Severe ME Awareness Day was started by the 25 Percent ME Group in 2013.<a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@mecfs</a> <a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener" target="_blank">@longcovid</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#PwME</a> <a href="https://disabled.social/tags/SevereME" class="mention hashtag" rel="nofollow noopener" target="_blank">#SevereME</a> <a href="https://disabled.social/tags/SevereMEAwarenessDay" class="mention hashtag" rel="nofollow noopener" target="_blank">#SevereMEAwarenessDay</a> <a href="https://disabled.social/tags/SevereMEDay" class="mention hashtag" rel="nofollow noopener" target="_blank">#SevereMEDay</a>

Tom KindlonJaime Seltzer, scientific director for <a href="https://disabled.social/tags/MEAction" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEAction</a>, posted on LinkedIn about the recent Senate Appropriations report<a href="https://www.linkedin.com/posts/jaime-seltzer-b23abb14_senate-committee-endorses-nih-budget-increase-activity-7357071058492944384-VACl" rel="nofollow noopener" translate="no" target="_blank">https://www.linkedin.com/posts/jaime-seltzer-b23abb14_senate-committee-endorses-nih-budget-increase-activity-7357071058492944384-VACl</a>Screenshot from Science for ME weekly update<a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@mecfs</a> <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener" target="_blank">#MyalgicEncephalomyelitis</a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#ChronicFatigueSyndrome</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#CFS</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#PwME</a>

ahimsa"<a href="https://disabled.social/tags/MEAction" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEAction</a>’s Pacing Narrative Data Gets Published in First Paper + MORE Science updates!"<a href="https://www.meaction.net/2025/07/22/meactions-pacing-narrative-data-gets-published-in-first-paper-more-science-updates/" rel="nofollow noopener" translate="no" target="_blank">https://www.meaction.net/2025/07/22/meactions-pacing-narrative-data-gets-published-in-first-paper-more-science-updates/</a>"Our Scientific Director, Jaime Seltzer, is in the process of coordinating analysis for three major studies, including our massive symptoms survey and pacing survey, drawn directly from the patient experience. Jaime is also working hard on a third big data study … stay tuned!"1/n<a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@mecfs</a> <a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener" target="_blank">@longcovid</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#PwME</a> <a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#LongCovid</a> <a href="https://disabled.social/tags/PwLC" class="mention hashtag" rel="nofollow noopener" target="_blank">#PwLC</a> <a href="https://disabled.social/tags/Research" class="mention hashtag" rel="nofollow noopener" target="_blank">#Research</a>

ahimsa"Severe ME Artists Project 2025"<a href="https://www.meaction.net/2025/07/10/severe-me-artists-project-2025/" rel="nofollow noopener" translate="no" target="_blank">https://www.meaction.net/2025/07/10/severe-me-artists-project-2025/</a><a href="https://disabled.social/tags/MEAction" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEAction</a> has announced their Severe ME Artists Project for 2025 in recognition of Severe ME Day on August 8th. Anyone who identifies as having severe ME can participate. If you need help submitting your artwork send email to sMEartistsproject@meaction.netSubmissions are due by July 24.<a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@mecfs</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#PwME</a> <a href="https://disabled.social/tags/SevereME" class="mention hashtag" rel="nofollow noopener" target="_blank">#SevereME</a> <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener" target="_blank">#MyalgicEncephalomyelitis</a> <a href="https://disabled.social/tags/Art" class="mention hashtag" rel="nofollow noopener" target="_blank">#Art</a> <a href="https://disabled.social/tags/ChronicIllness" class="mention hashtag" rel="nofollow noopener" target="_blank">#ChronicIllness</a>

Tom Kindlon<a href="https://disabled.social/tags/MEAction" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEAction</a> has announced their Severe ME Artists Project for 2025 in recognition of Severe ME Day on August 8th. Anyone who identifies as having severe ME can participate. Submissions are due by July 24. <a href="https://www.meaction.net/2025/07/10/severe-me-artists-project-2025/" rel="nofollow noopener" translate="no" target="_blank">https://www.meaction.net/2025/07/10/severe-me-artists-project-2025/</a><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@mecfs</a> <a href="https://disabled.social/tags/mecfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#mecfs</a> <a href="https://disabled.social/tags/SevereME" class="mention hashtag" rel="nofollow noopener" target="_blank">#SevereME</a> <a href="https://a.gup.pe/u/severeme" class="u-url mention" rel="nofollow noopener" target="_blank">@severeme</a>

ahimsaPolicy asks:- Restore funding for Congressionally Directed Medical Research Program (CDMRP) & protect ME/CFS as a topic area- Protect & restore the CDC’s Chronic Fatigue Syndrome Program- Fund the NIH’s ME/CFS Research Roadmap (in collaboration with <a href="https://disabled.social/tags/MEAction" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEAction</a> and <a href="https://disabled.social/tags/NotJustFatigue" class="mention hashtag" rel="nofollow noopener" target="_blank">#NotJustFatigue</a>)- Support 10-year follow-up to the 2015 IOM/NASEM report- Ensure ME/CFS is included in NIH restructuring discussionsDetails:<a href="https://solvecfs.org/wp-content/uploads/2025/07/Congressional_Briefing_061625Final.pdf" rel="nofollow noopener" translate="no" target="_blank">https://solvecfs.org/wp-content/uploads/2025/07/Congressional_Briefing_061625Final.pdf</a><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@mecfs</a> <a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener" target="_blank">@longcovid</a> 3/n<a href="https://disabled.social/tags/USPol" class="mention hashtag" rel="nofollow noopener" target="_blank">#USPol</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#LongCovid</a> <a href="https://disabled.social/tags/POTS" class="mention hashtag" rel="nofollow noopener" target="_blank">#POTS</a>

Tom KindlonFrom @meactnet :<a href="https://disabled.social/tags/MEAction" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEAction</a> is proud to bring you our Severe ME Artists Project 2025 that will feature work from those within the severe ME community and will be in recognition of Severe ME Day on August 8th! We have all the details here and we are happy to help you submit your work: <a href="https://www.meaction.net/2025/07/10/severe-me-artists-project-2025/" rel="nofollow noopener" translate="no" target="_blank">https://www.meaction.net/2025/07/10/severe-me-artists-project-2025/</a><a href="https://disabled.social/tags/mecfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#mecfs</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#PwME</a> <a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@mecfs</a> <a href="https://disabled.social/tags/SevereME" class="mention hashtag" rel="nofollow noopener" target="_blank">#SevereME</a>

Brian VastagGot a press release from <a href="https://sciencemastodon.com/tags/MEAction" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEAction</a> today saying the only <a href="https://sciencemastodon.com/tags/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#LongCovid</a> clinic in North Carolina, at UNC, is closing. The clinic has seen 3500 people, 70% women, and 43% had stopped working. Dire.

Tom Kindlon"Minnesota’s Long COVID Funding Saved from Elimination"The first-in-the-nation <a href="https://disabled.social/tags/LongCOVID" class="mention hashtag" rel="nofollow noopener" target="_blank">#LongCOVID</a> program, run by the Minnesota Department of Health (MDH), has been saved from budget cuts. “Advocacy works,” said Terri Wilder, chair of <a href="https://disabled.social/tags/MEAction" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEAction</a>’s Minnesota chapter<a href="https://thesicktimes.org/2025/06/11/minnesotas-unique-long-covid-program-retains-funding-following-advocacy/" rel="nofollow noopener" translate="no" target="_blank">https://thesicktimes.org/2025/06/11/minnesotas-unique-long-covid-program-retains-funding-following-advocacy/</a><a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener" target="_blank">@longcovid</a> <a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#LongCovid</a> <a href="https://disabled.social/tags/PwLC" class="mention hashtag" rel="nofollow noopener" target="_blank">#PwLC</a> <a href="https://disabled.social/tags/PostCovidSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#PostCovidSyndrome</a> <a href="https://disabled.social/tags/LC" class="mention hashtag" rel="nofollow noopener" target="_blank">#LC</a> <a href="https://disabled.social/tags/PASC" class="mention hashtag" rel="nofollow noopener" target="_blank">#PASC</a> <a href="https://disabled.social/tags/postcovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#postcovid</a> <a href="https://disabled.social/tags/CovidBrain" class="mention hashtag" rel="nofollow noopener" target="_blank">#CovidBrain</a> <a href="https://a.gup.pe/u/covid19" class="u-url mention" rel="nofollow noopener" target="_blank">@covid19</a> <a href="https://disabled.social/tags/COVID%E3%83%BC19" class="mention hashtag" rel="nofollow noopener" target="_blank">#COVIDー19</a> <a href="https://disabled.social/tags/COVID19" class="mention hashtag" rel="nofollow noopener" target="_blank">#COVID19</a> <a href="https://disabled.social/tags/COVID" class="mention hashtag" rel="nofollow noopener" target="_blank">#COVID</a> <a href="https://disabled.social/tags/COVID_19" class="mention hashtag" rel="nofollow noopener" target="_blank">#COVID_19</a> <a href="https://disabled.social/tags/SARSCoV2" class="mention hashtag" rel="nofollow noopener" target="_blank">#SARSCoV2</a>

ahimsaA protest guide from <a href="https://disabled.social/tags/MEAction" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEAction</a> for folks with ME/CFS, Long Covid, and other chronic illnesses that cause limited energy:<a href="https://www.meactions.org/_files/ugd/b5886a_67f8935af3594508b1a7bcd86e6b7c58.pdf" rel="nofollow noopener" translate="no" target="_blank">https://www.meactions.org/_files/ugd/b5886a_67f8935af3594508b1a7bcd86e6b7c58.pdf</a>"We hope this guide can help activism become more intersectional and enable those attending events to do so as safely as possible."<a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@mecfs</a> <a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener" target="_blank">@longcovid</a> <a href="https://disabled.social/tags/USPol" class="mention hashtag" rel="nofollow noopener" target="_blank">#USPol</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#LongCovid</a> <a href="https://disabled.social/tags/POTS" class="mention hashtag" rel="nofollow noopener" target="_blank">#POTS</a> <a href="https://disabled.social/tags/Fibromyalgia" class="mention hashtag" rel="nofollow noopener" target="_blank">#Fibromyalgia</a> <a href="https://disabled.social/tags/NEISvoid" class="mention hashtag" rel="nofollow noopener" target="_blank">#NEISvoid</a> <a href="https://disabled.social/tags/ChronicIllness" class="mention hashtag" rel="nofollow noopener" target="_blank">#ChronicIllness</a> <a href="https://disabled.social/tags/Disability" class="mention hashtag" rel="nofollow noopener" target="_blank">#Disability</a> <a href="https://disabled.social/tags/Resist" class="mention hashtag" rel="nofollow noopener" target="_blank">#Resist</a> <a href="https://disabled.social/tags/Protest" class="mention hashtag" rel="nofollow noopener" target="_blank">#Protest</a> <a href="https://disabled.social/tags/WearAMask" class="mention hashtag" rel="nofollow noopener" target="_blank">#WearAMask</a>

ahimsa<a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener" target="_blank">@longcovid</a> <a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@mecfs</a> More quotes:"This gap in clinical education isn’t just an Australian issue — it’s global. In the US, training initiatives like Project ECHO have made strides in supporting providers but are now facing potential cuts under the Trump administration. Meanwhile, advocacy groups and research centers are stepping in…a campaign from ME advocacy group <a href="https://disabled.social/tags/MEAction" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEAction</a> aims to educate healthcare professionals about ME and its connection to Long COVID"<a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#LongCovid</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/ChronicIllness" class="mention hashtag" rel="nofollow noopener" target="_blank">#ChronicIllness</a>

ahimsaNew video from <a href="https://disabled.social/tags/MEAction" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEAction</a>"The <a href="https://disabled.social/tags/MillionsMissing" class="mention hashtag" rel="nofollow noopener" target="_blank">#MillionsMissing</a> Share Their Stories 2025"<a href="https://www.youtube.com/watch?v=BTCqXA1p8OY" rel="nofollow noopener" translate="no" target="_blank">https://www.youtube.com/watch?v=BTCqXA1p8OY</a>"…a small sampling of the Millions Missing. You sent in your photos and a few words for us to display at <a href="https://disabled.social/tags/MillionsMissing" class="mention hashtag" rel="nofollow noopener" target="_blank">#MillionsMissing</a> 2025. These stories deserve to be told. Each person deserves to be seen. And know that they represent so many others."Still images here:<a href="https://www.meactions.org/the-millions-missing" rel="nofollow noopener" translate="no" target="_blank">https://www.meactions.org/the-millions-missing</a><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@mecfs</a> <a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener" target="_blank">@longcovid</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#PwME</a> <a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#LongCovid</a> <a href="https://disabled.social/tags/PwLC" class="mention hashtag" rel="nofollow noopener" target="_blank">#PwLC</a> <a href="https://disabled.social/tags/MEAwareness" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEAwareness</a> <a href="https://disabled.social/tags/MillionsMissing" class="mention hashtag" rel="nofollow noopener" target="_blank">#MillionsMissing</a> <a href="https://disabled.social/tags/Disability" class="mention hashtag" rel="nofollow noopener" target="_blank">#Disability</a> <a href="https://disabled.social/tags/DisabilitySOS" class="mention hashtag" rel="nofollow noopener" target="_blank">#DisabilitySOS</a>

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