#pwme
47 posts · Last used 13d
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'Nobody knows what to do': How Long COVID left Physics Girl searching for answers
Article
https://www.kpbs.org/news/arts-culture/2026/10/21/nobody-knows-what-to-do-how-long-covid-left-physics-girl-searching-for-answers
Podcast
https://www.kpbs.org/podcasts/the-finest/physics-girl-spent-her-life-explaining-science-then-science-couldnt-explain-her-illness
Screenshot from latest Science for ME weekly update
#LongCovid #MEcfs #PwME #CFS@mecfs@fedigroups.social @longcovid@fedigroups.social
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"What it’s like to be masking in 2026"
"In which I answer the burning question everyone is asking – 'why are you still masking in 2026'?"
https://nannyogg63.substack.com/p/what-its-like-to-be-masking-in-2026
She has ME/CFS and asthma herself but it's a general article
#masking #MaskUp #Covidisairborne #CovidIsNotOver @mecfs@fedigroups.social @longcovid@fedigroups.social
#MEcfs #LongCovid
#PwME #CFS
@NoVID@chirp.social #novid #chronicillness
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Low Vasopressin in Myalgic Encephalomyelitise/Chronic Fatigue Syndrome
Vasopressin is also known as antidiuretic hormone
https://www.endocrinepractice.org/article/S1530-891X(25)01349-7/fulltext
Screenshot from AMMES October 2026 newsletter
#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs@fedigroups.social
Health is Political by Brittani James
“Long COVID Changed Everything”
https://www.blog.brittanijamesmd.com/p/long-covid-changed-everything
Description from Science for ME @s4me@universeodon.com update:
Good blog post by Family Medicine physician Dr. Brittani James on what illnesses such as #LongCovid & ME reveal about medicine's limits.
#pwme #mecfs @mecfs@fedigroups.social @longcovid@fedigroups.social
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ME/CFS explained by ducks!
A funny presentation of serious subject matter in less than one minute.
Please watch / boost even if you don't have ME/CFS.
Thank you! ❤️
From diploma.duck on Instagram: https://www.instagram.com/p/DeKkY5-xGkv
Transcript in alt text, let me know if you find errors or important omissions - I tried to include all important details.
@mecfs@fedigroups.social#MEcfs #PwME #ChronicIllness #AltText
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I was one of a number of patient scientists and advocates who was interviewed for this sympathetic, open access paper
"Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis"
https://www.sciencedirect.com/science/article/pii/S003936812600110X?via%3Dihub
#MEcfs #PwME #epatient #epatients #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs@fedigroups.social
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Living a rock ‘n’ roll life: doing laps of the local green air (300 metres) to check battery length of my electric wheelchair! 😜
Didn’t get a great angle for this photo when I was taking one of many breaks lying on a bench.
#MEcfs #PwME #MyalgicEncephalomyelitis #SpoonieLife #ChronicLife @mecfs@fedigroups.social
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Mandating Exercise? Completely Fricking Senseless!
This one is my little rant against doctors who suggest GET (graded exercise therapy). GET does not work and usually makes folks worse.
This point is mentioned in this article if you want to read more: https://www.theguardian.com/commentisfree/2026/sep/24/abandoned-dismissed-and-gaslighted-me-sufferers-betrayed
Archive version for those who avoid The Guardian:
https://archive.is/R7fnL
(thanks to @Rhube@wandering.shop )
#MEcfs #PwME
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Medical Excuses Continue - Funding Scarce!
"ME/CFS is the most under-funded condition, receiving <1% of its YLD proportionate funding"
source = https://www.nature.com/articles/s43856-026-01516-7
#MEcfs #PwME
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As many of you already know, George Monbiot has published another hard-hitting article on ME in the Guardian today.
Great to see such coverage especially as the Guardian published some rubbish by others before
https://www.theguardian.com/commentisfree/2026/sep/24/abandoned-dismissed-and-gaslighted-me-sufferers-betrayed
#MEcfs #PwME @mecfs@fedigroups.social
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"I would be here if I could" travelling art installation by artist Alison Larkman
https://www.iwouldbehereificould.com/
https://meassociation.org.uk/2026/09/i-would-be-here-if-i-could-me-association-trustee-attends-mirrorbox-event-at-the-royal-opera-house/
Screenshot from latest Science for ME weekly update
#MEcfs #LongCovid #PwME #CFS@mecfs@fedigroups.social @longcovid@fedigroups.social




