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Ahimsa @ahimsa_pdx@disabled.social · 6d ago
From #MEAction for Severe ME Day (Aug. 8) "Honoring Severe ME Day & Sharing our Severe ME Artists Project 2026" https://www.meaction.net/post/honoring-severe-me-day-sharing-our-severe-me-artists-project-2026 "#MEAction is proud to share the Severe ME Artists Project 2026! ... over 100 of you submitted photos, drawings, writing, and videos of your work! We debuted this project in 2021 and five years later we continue to be humbled and honored to bring you the work of the Severe ME community" 1/3 @mecfs@fedigroups.social #MEcfs #SevereME #SevereMEcfs #PwME #Art #Disability
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Tom Kindlon @tomkindlon@disabled.social · Jul 25, 2026
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"Glandular fever*’s not just the ‘kissing disease’...The risk of chronic fatigue [syndrome] means the ‘kissing disease’ should not be downplayed. Experts say there can be long-term consequences" https://www.theaustralian.com.au/health/medical/glandular-fevers-not-just-the-kissing-disease-as-kaylee-mckeown-found-out/news-story/c97eaf0b87503ffc9db4a4abe0aeee6d?amp Archive https://archive.is/4Tf0p *aka Mono #MEcfs #PwME #CFS #ME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs@fedigroups.social
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Tom Kindlon @tomkindlon@disabled.social · Jul 22, 2026
Proposed Framework for Personalized Severity Assessment in ME/CFS to Capture Variation in ME/CFS Severity and Life Impairment across Patients and Time (2024) https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2024.1369295/full #MEcfs #CFS #PwME #SevereME #SevereMECFS #SevereCFS #VerySevereME @mecfs@fedigroups.social
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Ahimsa @ahimsa_pdx@disabled.social · Jul 20, 2026
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"For 15,000 Mainers with ME/CFS, the next step is in Congress’ hands" https://www.pressherald.com/2026/07/19/for-15000-mainers-with-me-cfs-the-next-step-is-in-congress-hands-opinion/ "Myalgic encephalomyelitis/chronic fatigue syndrome is an illness as debilitating as it is overlooked." Article urging Congress to fund the ME/CFS Research Roadmap which was approved by NIH in 2024 but still not funded. @mecfs@fedigroups.social #MEcfs #PwME #Research #NIH #USPol
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Tom Kindlon @tomkindlon@disabled.social · Jul 13, 2026
ME Research UK: A study exploring experiences of pacing with a heart rate monitor for people with ME/CFS has been published in the Journal "Fatigue: Biomedicine, Health & Behavior". Find out what the research team learned here: https://tinyurl.com/phymsee4 #mecfs #pwme @mecfs@fedigroups.social
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Tom Kindlon @tomkindlon@disabled.social · Jun 29, 2026
New research from sympathetic & knowledgeable Physios for ME team et al. Experiences of pacing with a heart rate monitor for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Free fulltext: https://www.tandfonline.com/doi/full/10.1080/21641846.2026.2681411 #MEcfs #PwME #ME #MyalgicE @mecfs@fedigroups.social
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Tom Kindlon @tomkindlon@disabled.social · Jul 07, 2026
Replying to @tomkindlon@disabled.social
2/ Experiences of pacing with a heart rate monitor for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome https://www.tandfonline.com/doi/abs/10.1080/21641846.2026.2681411 Screenshot from latest Science for ME weekly update #MEcfs #PwME  @mecfs@fedigroups.social
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Tom Kindlon @tomkindlon@disabled.social · Jul 02, 2026
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Tom Kindlon @tomkindlon@disabled.social · Jun 30, 2026
“The Best ME/CFS and Long COVID Treatment Guides in the U.S.: A Round-Up for Patients, Caregivers, and Clinicians” (8-minute read) https://www.caregiverwisdom.net/post/best-me-cfs-and-long-covid-treatment-guides-for-patients-caregivers-and-clinicians #LongCovid #MEcfs #pwme #cfs @longcovid@fedigroups.social @mecfs@fedigroups.social
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Tom Kindlon @tomkindlon@disabled.social · Jun 28, 2026
From Germany 🇩🇪 Evaluation of an Integrated Multidisciplinary Care Model for [ME/CFS]: A Prospective, Open-label, ...study https://papers.ssrn.com/sol3/papers.cfm?abstract_id=6989698 "Post-rehabilitation Bell Disability Scale scores decreased [i.e. worsened] In 42/94 (45%) and increased in only 13/94 (14%) patients" #MEcfs #PwME #ME #MyalgicE @mecfs@fedigroups.social
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Tom Kindlon @tomkindlon@disabled.social · Jun 21, 2026
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🧵 Another excellent blog by Fred Rossi who is well worth following "The Patient Who Isn’t Supposed to Exist" https://darthfoo.substack.com/p/the-patient-who-isnt-supposed-to Nominally on the recent, controversial WIRED article but the points are pretty general #LongCovid #MEcfs #PostExertionalMalaise #PEM #PwME #ME #MyalgicE @mecfs@fedigroups.social @longcovid@fedigroups.social 1/
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Tom Kindlon @tomkindlon@disabled.social · Jun 09, 2026
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I like many other people thought this blog post was very good "Why I Can’t Just Meet You for Dinner" https://substack.com/home/post/p-178293036 Screenshot from AMMES May 2026 Newsletter #MEcfs @longcovid@fedigroups.social #LongCovid #PASC #PwLC #postcovid #postcovid19 #PostCovidSyndrome #PEM #PostExertionalMalaise #PwME #ME #MyalgicE @mecfs@fedigroups.social
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Tom Kindlon @tomkindlon@disabled.social · Jun 09, 2026
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Researchers including Dr Bo Bertilson, funded by ME Research UK alongside the OMF and the Amar Foundation, have identified that protein signatures in cerebrospinal fluid differ between groups of people with ME/CFS. Read more about the study here: https://bit.ly/4vxGNYS #mecfs #pwme #cfs @mecfs@fedigroups.social
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Alex :v_agender: @AncTreat5358@lgbtqia.space · May 08, 2026
Does anyone in Colorado have a suggested neurologist that treats ME/CFS? I had Dr Pocsine with Frontier Neurology in Wheat Ridge who gave me the diagnosis, but she can't take my insurance anymore. I've web searched, but haven't run across anyone else. #pwME #Colorado #MECFS
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Irish ME/CFS Association @IrishMECFSAssociation@mastodon.ie · Apr 30, 2026
RE: https://mastodon.ie/@IrishMECFSAssociation/116431267742450459 One week to go. Apart from the people who responded to the FB event (one going, 23 interested), two other people have said they hope to attend. #MEcfs #PwME @mecfs@fedigroups.social
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Tom Kindlon @tomkindlon@disabled.social · Feb 02, 2026
Living with #MECFS All of these things can be out of reach, or close to, for some #MyalgicEncephalomyelitis patients. Some will be able to attain some of these things at certain points during their illness. From Lu Baker Art https://instagram.com/lubakerart (repeat) #CFS #PwME #ChronicFatigueSyndrome @mecfs@fedigroups.social
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