#cfs

'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

"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

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

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

“…in the UK alone, an estimated 400,000 people live with the condition… The number of people with long Covid… was estimated in 2024 at 2 million in England and Scotland.” https://www.theguardian.com/commentisfree/2026/sep/24/abandoned-dismissed-and-gaslighted-me-sufferers-betrayed #ME #LongCovid #CFS #ChronicFatigue

"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

Zoe Sirotiak – a person with ME/CFS, researcher, and physical therapist – has published a paper on how the societal expectation for people who are unwell to “get better” can create harm for people with chronic diseases, like ME/CFS. Read more: https://bit.ly/4irwxOp #mecfs #cfs #pwme @mecfs@fedigroups.social

Therapy via Messaging https://chroniclivingtherapy.com/insights-text-based-therapy/ Screenshot from latest edition of the Chronic Living Therapy email bulletin #MEcfs #Spoonies #PwME #Spoonie #SevereME #LongCovid #CFS #chronicillness@mecfs@fedigroups.social @longcovid@fedigroups.social #POTS @pots@fedigroups.social

🧵 ME Research UK We are deeply appreciative that the community has shared their experiences with us. Those detailing the devastation of cognitive dysfunction in ME/CFS are both moving and profoundly informative. https://www.meresearch.org.uk/the-experience-and-impact-of-cognitive-dysfunction-in-me-cfs/ #MEcfs #PwME #CFS #BrainFog @mecfs@fedigroups.social 1/

News Release 2-Sep-2026 Scientists uncover shared biology behind profound fatigue in five major illnesses https://www.eurekalert.org/news-releases/1142275 Paper: https://link.springer.com/article/10.1186/s12967-026-08874-9 UK Times article (paywalled) https://www.thetimes.com/uk/healthcare/article/me-long-covid-chronic-fatigue-illnesses-x6rm6w5wf #MEcfs #LongCovid #PwME #CFS @mecfs@fedigroups.social @longcovid@fedigroups.social 1/

“The Relentless Work of Being Sick” “A new book examines the labor of getting chronic illness diagnosed and treated—for those lucky enough to get care.” https://www.motherjones.com/media/2026/09/rogers-sick-work-duke-press-qa-interview-chronic-illness/ #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs@fedigroups.social #spoonie

gefüttert und es ist quasi runtergebrochen ein Test, der Leute rausfiltern soll, die ihre Symptome übertreiben, wenn ich das richtig verstanden habe. Ich habe aber gar keine seelische Erkrankung. Was sollte der Test? Davon ab hat die DRV seit vielen Jahren nicht angezweifelt, dass ich krank bin? Die Ärztin hatte kaum Unterlagen, auch nicht von der Diagnose vor etlichen Jahren aus dem Erstantrag, nur das aus dem Widerspruch. ??? #cfs

“French state health insurance updates classification of chronic fatigue [syndrome]” “Illness is no longer classified as psychological” https://www.connexionfrance.com/news/french-state-health-insurance-updates-classification-of-chronic-fatigue/809609 #MEcfs #CFS #PwME @mecfs@fedigroups.social

Using advanced MRI techniques, ME Research UK-funded researchers at Griffith University have detected subtle alterations in brain tissue microstructure in ME/CFS & long COVID, supporting the idea that the illnesses share underlying neurological features https://bit.ly/4i8mYn9 #MEcfs #LongCovid #CFS #PwME @mecfs@fedigroups.social @longcovid@fedigroups.social

🧵 ME Research UK: Careers, relationships, family life, hobbies, basic tasks – PEM can tear through it all. The sheer symptom burden and ripple effects can impact mental health. We urge anyone in distress to consider reaching out to appropriate organisations e.g. Mind (https://mind.org.uk) #MEcfs #PwME #CFS @mecfs@fedigroups.social 1/

2/ Impact of PEM in ME/CFS #PEM #MEcfs #PwME #CFS #MyalgicEncephalomyelitis #longcovid@mecfs@fedigroups.social

"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

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

Exciting new developments in research. Directly measuring ATP (and thus, energy) levels in the brain through MRI scans. #me #cfs #mecfs #longcovid #PAIS www.youtube.com/watch?v=TV9h... 086 - We can now measure the b...

Biomarkers of post-acute infection syndrome: a systematic literature review https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2026.1741761/full "Overall, the total risk of bias was frequently classified as high, whereas only a limited number of studies demonstrated a low or moderate overall risk of bias” #LongCovid #mecfs #cfs @mecfs@fedigroups.social @longcovid@fedigroups.social