ME/CFS San Diego, a 501c3 public charity, is working locally to raise awareness of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), to help educate healthcare workers and researchers, to increase access and support for ME/CFS patients.https://bsky.app/profile/mecfssd.bsky.socialhttps://bsky.app/profile/mecfssd.bsky.social/post/3mtwf5awd722iRetinal microvascular changes study: In 102 WHO-defined LC patients, 62 met CCC ME/CFS criteria. The ME/CFS subgroup had the most pronounced retinal microvascular changes, including lower arteriolar-to-venular ratios. https://link.springer.com/article/10.1186/s12916-026-05144-925 Aug 2026 17:53 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mtwf5awd722ihttps://bsky.app/profile/mecfssd.bsky.social/post/3mtwf3oaomk2iME/CFS Heterogeneity @meresearchuk.bsky.social : Severity, PEM, illness duration, comorbidities, diagnostic criteria & trigger differences blur biomarker & treatment findings. Better-defined subsets & inclusion of severe ME/CFS could show important differences. https://www.meresearch.org.uk/heterogeneity-in-me-cfs/25 Aug 2026 17:52 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mtwf3oaomk2ihttps://bsky.app/profile/mecfssd.bsky.social/post/3mtweoasmjk2iResearch Resources @emec.bsky.social : International overview of ME/CFS research funding, biobanks, networks and conferences, including opportunities from patient organizations and major research funders. https://europeanmecoalition.com/resources-for-researchers/25 Aug 2026 17:44 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mtweoasmjk2ihttps://bsky.app/profile/mecfssd.bsky.social/post/3mtwemcavtk2iLumbrokinase Trial for ME/CFS/PTLD: Final U.S. participants needed for open-label home-based trial. Must be 18+, live in the U.S., and have a physician diagnosis of ME/CFS or PTLD. Apply: CoreResearch@MountSinai.org25 Aug 2026 17:43 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mtwemcavtk2ihttps://bsky.app/profile/mecfssd.bsky.social/post/3mtweknhefs2iSevere ME/CFS GP Guide: ANZMES resource for NZ/Aotearoa healthcare workers, covering red flags and key considerations in severe ME. Know M.E. also offers clinical education for clinics and MDTs. https://anzmes.org.nz/wp-content/uploads/2026/08/Severe-ME-Day-2026-GP-Red-Flags.pdf25 Aug 2026 17:42 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mtweknhefs2ihttps://bsky.app/profile/mecfssd.bsky.social/post/3mtwej4h2uc2iNew NIH NINDS/MECFSnet Webinar Series: Oct. 8 launch focuses on post-acute infection symptoms, including mechanisms of symptom persistence, with research relevant to ME/CFS and model systems. 1–3 p.m. ET https://rtiorg.zoom.us/webinar/register/WN_7FrDcz58QtWn0IfMo9AWLQ#/registration25 Aug 2026 17:41 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mtwej4h2uc2ihttps://bsky.app/profile/mecfssd.bsky.social/post/3mtwei3bsvk2iSevere ME/CFS care @batemanhornecenter.bsky.social Blog Amy Mooney: practical guidance from an OT on reducing sensory, cognitive, orthostatic and physical exertion, protecting limited capacity, and adapting care to what patients actually tolerate. https://batemanhornecenter.org/listen_believe_do_no_harm/25 Aug 2026 17:41 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mtwei3bsvk2ihttps://bsky.app/profile/mecfssd.bsky.social/post/3mtv634ewu223Environmental exposures may play a role in chronic illness in ways we don’t yet understand. Here’s a guide to recognizing ME/CFS and Long COVID in children and adults, including how ME/CFS can present differently in children. https://www.reddit.com/r/mecfsSD/comments/1vxrftm/in_response_to_a_recent_local_school_closure/25 Aug 2026 06:13 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mtv634ewu223https://bsky.app/profile/mecfssd.bsky.social/post/3mtrx4yomq22wWhat About M.E.?: Free Sept. 18 Culture Night event in Galway featuring four short plays by & about ME/CFS/LC, followed by a discussion w/ @irishmecfsassoc.bsky.social secretary Orla Ní Chomhraí. Online or in person. https://culturenight.ie/event/what-about-m-e/23 Aug 2026 23:31 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mtrx4yomq22whttps://bsky.app/profile/mecfssd.bsky.social/post/3mtrx2xwh5s2wVoting Access Update: USPS finalized a rule that could restrict delivery of mail ballots to states that don't meet new federal requirements. Courts currently block implementation, legal fight is ongoing. https://www.theguardian.com/us-news/2026/aug/21/us-postal-service-mail-in-voter-rule23 Aug 2026 23:30 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mtrx2xwh5s2whttps://bsky.app/profile/mecfssd.bsky.social/post/3mtrwzydgmk2wNSU's INIM Probiotic Study Recruitment: A ME/CFS Health Research survey is being used to identify eligible adults 18–75 who meet Canadian Consensus Criteria for ME/CFS, w/ or w/o IBS. https://redcap.nova.edu/redcap/surveys/?s=9NP434FLJXAFLY8Y23 Aug 2026 23:30 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mtrwzydgmk2whttps://bsky.app/profile/mecfssd.bsky.social/post/3mtrwywmo4c2w@tomkindlon.bsky.social on ME/CFS: 32 years severely affected & largely housebound, he highlights urgent need for more research funding. https://www.independent.ie/lifestyle/health-wellbeing/no-one-chooses-to-have-me-everything-changed-when-i-became-ill/a/150853043.html23 Aug 2026 23:29 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mtrwywmo4c2whttps://bsky.app/profile/mecfssd.bsky.social/post/3mtrwyhwddc2w@tomkindlon.bsky.social on ME/CFS: 32 years severely affected & largely housebound, he highlights urgent need for more research funding. https://www.independent.ie/lifestyle/health-wellbeing/no-one-chooses-to-have-me-everything-changed-when-i-became-ill/a/150853043.html23 Aug 2026 23:29 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mtrwyhwddc2whttps://bsky.app/profile/mecfssd.bsky.social/post/3mtrwwrl33c2wNSU's INIM 2026 Conference: Translational Research 10/9, covering preclinical models, Phase I/II trials, treatment applications, & a clinician Q&A. Zoom access will be available. https://docs.google.com/forms/d/e/1FAIpQLSdR6oxU9TkT9tAxdwUapcv7jfjo-puQLwXdhOSHyHZ5h06lSA/viewform?usp=send_form23 Aug 2026 23:28 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mtrwwrl33c2whttps://bsky.app/profile/mecfssd.bsky.social/post/3mtrwsozdlc2wClinical Trial Evidence Guide in @thesicktimes.org : Questions to ask about trial phase, controls, outcomes, Long COVID definitions, funding, and whether findings hold up. Useful for evaluating evidence and treatment claims in ME/CFS/LC. https://thesicktimes.org/questions-to-ask-when-evaluating-evidence-from-clinical-trials/23 Aug 2026 23:26 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mtrwsozdlc2whttps://bsky.app/profile/mecfssd.bsky.social/post/3mtrwp4e7hs2wEditorial on Repeated PEM: could contribute to cumulative physiological strain and cardiometabolic burden over time. Asks could frequent crashes cause cardiometabolic harm? https://link.springer.com/article/10.1186/s12933-026-03316-823 Aug 2026 23:24 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mtrwp4e7hs2whttps://bsky.app/profile/mecfssd.bsky.social/post/3mtrwnzykyk2wPacing as a Treatment Opinion: ME/CFS needs more treatment options, awareness & funding. Pacing/Energy Management reduces PEM and crashes, & may improve prognosis. We should promote Pacing as a treatment while pushing for more options, not pretend it isn’t one.23 Aug 2026 23:23 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mtrwnzykyk2whttps://bsky.app/profile/mecfssd.bsky.social/post/3mtmnqedm5k2hCMS changes: Medicaid work requirements & coverage loss https://www.kff.org/medicaid/medicaid-work-requirements-tracker-overview/; hospital payment limits https://www.kff.org/medicaid/at-least-37-states-have-medicaid-state-directed-payments-for-hospital-services-that-could-be-reduced-by-the-2025-reconciliation-law-limits/; 2026 ACA Marketplace enrollment https://www.kff.org/affordable-care-act/how-has-aca-marketplace-enrollment-changed-across-states-in-2026/21 Aug 2026 21:00 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mtmnqedm5k2hhttps://bsky.app/profile/mecfssd.bsky.social/post/3mtmnp52cqs2hLC/ME/CFS brain energy study: Findings suggest impaired cellular energy production may contribute to cognitive problems in LC, incl. ME/CFS subset. A potential link between brain energy metabolism and symptoms worth investigating. pubmed.ncbi.nlm.nih.gov/41525818/ https://pubmed.ncbi.nlm.nih.gov/41525818/21 Aug 2026 20:59 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mtmnp52cqs2hhttps://bsky.app/profile/mecfssd.bsky.social/post/3mtmnkvpmps2hUpdated ME/CFS San Diego ME/CFS/LC School Information, Resources & Accommodations Guides: Prepare for the new school year with guides for K-12 and adults. https://www.mecfssandiego.com/mecfs-and-school21 Aug 2026 20:57 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mtmnkvpmps2hhttps://bsky.app/profile/mecfssd.bsky.social/post/3mtmnjz4ofk2hUS emergency department delays: More than half of patients admitted to general medical care waited 4+ hours for an inpatient bed, with some waiting 24+ hours. A major concern for ME/CFS patients needing emergency or hospital care. https://www.cidrap.umn.edu/public-health/emergency-room-patients-often-wait-4-hours-or-more-hospital-bed-some-more-day21 Aug 2026 20:56 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mtmnjz4ofk2hhttps://bsky.app/profile/mecfssd.bsky.social/post/3mtmnivl42k2h@openmedf.bsky.social CTN Lite PEM Survey: Help shape how PEM, crashes, and post-exertional symptom worsening are defined and measured in CTN Lite trials. Responses go directly into trial design. Anonymous, 20-30 min. Closes Sept 18. https://docs.google.com/forms/d/e/1FAIpQLSejrvNAjf2ouio48Fjw6MAQ2vfAr3uSTJPSDKQQfW0nCtD1Pw/viewform21 Aug 2026 20:56 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mtmnivl42k2hhttps://bsky.app/profile/mecfssd.bsky.social/post/3mtmnh3zx2s2h2026 Stanford Community Symposium on the Molecular Basis of ME/CFS: Sept 11 virtual public symposium, 8 am PST. Patients, caregivers, clinicians & others welcome. Registration required and capacity is limited. Agenda coming soon. https://stanford.zoom.us/webinar/register/WN_SHMUXqjTSj6wNicQ6LSyPw21 Aug 2026 20:55 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mtmnh3zx2s2hhttps://bsky.app/profile/mecfssd.bsky.social/post/3mtf2do23kc2s@s4me.info Severe & Very Severe ME/CFS Care Fact Sheet: annual specialist assessment, home-based specialist nursing, prevention of deterioration, disability/education assessment, adaptations, & nutritional support. https://s4me.info/docs/Management%20of%20severe%20and%20very%20severe%20MECFS.pdf18 Aug 2026 20:24 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mtf2do23kc2shttps://bsky.app/profile/mecfssd.bsky.social/post/3mtezbcbihk2sEthics Complaint Against @wired.com Update: @longcovidsos.bsky.social formally endorses the patient-led complaint, joining 25+ advocates and @meactnet.bsky.social in calling for ethical, evidence-based reporting on ME/CFS/LC. https://www.meaction.net/2026/08/18/press-release-long-covid-sos-endorses-journalism-ethics-complaint-against-wired/18 Aug 2026 20:05 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mtezbcbihk2shttps://bsky.app/profile/mecfssd.bsky.social/post/3mtez6lljuc2sSevere ME @pillowwriters.bsky.social Monthly Zoom: a quiet, gentle 30-minute meeting to connect w/ others with severe ME. Join for as much or as little of the meeting as you’re able. https://pillowwriters.wordpress.com/2026/05/08/softest-pillows/18 Aug 2026 20:03 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mtez6lljuc2shttps://bsky.app/profile/mecfssd.bsky.social/post/3mtez3nyyo22sUK Only @meassociation.org.uk ME/CFS Alert Card: £1 plastic wallet-sized card w/ key information on ME/CFS, incl. PEM, cognitive difficulties, sensory sensitivities, & mobility problems. https://meassociation.org.uk/product/mea-alert-card/18 Aug 2026 20:02 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mtez3nyyo22shttps://bsky.app/profile/mecfssd.bsky.social/post/3mteyzldfbk2sNew ME/CFS Israel Clinic Opens in Tel Aviv: after Dr. Orit Gourgy-Hacohen’s visit to @batemanhornecenter.bsky.social to learn about its patient-centered approach to ME/CFS care. A welcome expansion of informed care.18 Aug 2026 20:01 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mteyzldfbk2shttps://bsky.app/profile/mecfssd.bsky.social/post/3mteyt7nmw22sMedicaid & CHIP Names Resource: @mecfssd.bsky.social updated its list of state & territory Medicaid and CHIP program names, making it easier to identify the programs you may encounter under different names. https://www.mecfssandiego.com/mecfs-resources/chip-medicare-and-medicaid-programs18 Aug 2026 19:57 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mteyt7nmw22shttps://bsky.app/profile/mecfssd.bsky.social/post/3mteyrevdxs2sUK New specialist ME/CFS service for Kent & Medway: due to open 1 September, covering mild to very severe ME/CFS, including specialist support for people with the severest illness. meassociation.org.uk/mgop https://meassociation.org.uk/mgop18 Aug 2026 19:56 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mteyrevdxs2s