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/3mrtwlntgjs2tPIONEER ME/CFS Trial (Charité Germany): randomized inebilizumab (CD19 B-cell depletion) in selected subset of ME/CFS patients w/ elevated β2-adrenergic receptor antibodies who previously showed a temporary response to immunoadsorption. https://clinicaltrials.gov/study/NCT07724834 @scheibenbogen.bsky.social30 Jul 2026 07:37 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mrtwlntgjs2thttps://bsky.app/profile/mecfssd.bsky.social/post/3mrtwd6nzrk2t@sciam.bsky.social article: FcRn-blocking therapies reduce IgG antibodies by preventing their recycling. https://www.scientificamerican.com/custom-media/argenx/a-long-hunt-pays-off-for-targeted-autoimmune-disease-treatments/ @scheibenbogen.bsky.social Team ME/CFS study w/ mention: https://www.tandfonline.com/doi/full/10.1080/14712598.2025.2492774#d1e233)30 Jul 2026 07:32 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mrtwd6nzrk2thttps://bsky.app/profile/mecfssd.bsky.social/post/3mrtw7f2u722tSpanish hospital study: 3–5% long COVID reflects administrative tracking rather than true prevalence. Cases were limited to official occupational health logs, and one hospital relied on extended sick leave records without available clinical validation. https://link.springer.com/article/10.1186/s12889-026-28415-930 Jul 2026 07:30 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mrtw7f2u722thttps://bsky.app/profile/mecfssd.bsky.social/post/3mrtvok3cd22tCDC Study on Invasive Mold Infections: examined serious infections by certain mold species in medically high-risk patients, prompted by concerns about mold-related illness after disasters & found them to be underrecognized, . https://apnews.com/article/mold-disease-cdc-report-flooding-dc2d3ee9fa70d6c4aa825962637f4fda30 Jul 2026 07:20 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mrtvok3cd22thttps://bsky.app/profile/mecfssd.bsky.social/post/3mrtvmu22f22t@batemanhornecenter.bsky.social Survey CLOSING SOON: 125+ patients shared what resources they need most, including appointment tools, provider guidance, daily living support, MCAS/immune system information, research updates, & treatment discussions. https://batemanhornecenter.jotform.com/26173483442705830 Jul 2026 07:19 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mrtvmu22f22thttps://bsky.app/profile/mecfssd.bsky.social/post/3mrtviubifk2tFederal Research Grant Rule Contact Your Reps!: @solveme.bsky.social urges you to ask Reps https://www.congress.gov/members/find-your-member to oppose a proposed OMB rule allowing political appointees to override scientific peer review, cancel active grants, & more. ow.ly/3bHM50ZtzUs30 Jul 2026 07:17 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mrtviubifk2thttps://bsky.app/profile/mecfssd.bsky.social/post/3mrtpvvwh2k2t@meactnet.bsky.social ER Survey: MEAction will be CLOSING 10 am PT 7/30. If you have diagnosed ME/CFS/LC & have been to emergency room in the past 10 years for your symptoms, take the Emergency Department survey: ow.ly/QlUt50ZtCoN https://ow.ly/QlUt50ZtCoN30 Jul 2026 05:37 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mrtpvvwh2k2thttps://bsky.app/profile/mecfssd.bsky.social/post/3mrsnvja7322kSocial Security Advisory Board Calls for Easier SSI Reporting: Report urges SSA to simplify SSI reporting with better online tools, a recipient record view, & more automation to reduce payment errors & make reporting easier for people with disabilities. https://www.ssab.gov/research/supplemental-security-income-and-reporting-requirements/29 Jul 2026 19:28 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mrsnvja7322khttps://bsky.app/profile/mecfssd.bsky.social/post/3mrsnuboh622kDeakin University (Geelong, AU) in-person (5 Visits) Long COVID FMT Trial: Researchers are testing whether fecal microbiome transplantation (FMT) could improve LC symptoms. 18–65 w/ moderate to severe LC symptoms Contact: CTUClinicalTrialsUnit@barwonhealth.org.au | (03) 4215 307829 Jul 2026 19:28 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mrsnuboh622khttps://bsky.app/profile/mecfssd.bsky.social/post/3mrsnf7zu222k@solveme.bsky.social Funded: Early-access manuscript from Rob Wüst’s team finds that, in the ME/CFS/LC participants studied, inactivity alone did not explain reduced exercise capacity & skeletal muscle abnormalities compared w/ healthy people after 60 days of bed rest. https://www.nature.com/articles/s41467-026-75725-y29 Jul 2026 19:19 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mrsnf7zu222khttps://bsky.app/profile/mecfssd.bsky.social/post/3mrsnb27vlc2kIn Their Words Series @batemanhornecenter.bsky.social : Share your Severe ME/CFS story for Awareness Day through a short written reflection, audio, or video. Submissions are due Wed., Aug. 5. bit.ly/4ftJXq5 https://bit.ly/4ftJXq529 Jul 2026 19:17 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mrsnb27vlc2khttps://bsky.app/profile/mecfssd.bsky.social/post/3mrsn6f5s5s2kMedicare Drug Premium Subsidies Ending: Millions of Medicare beneficiaries could pay higher drug plan premiums in 2027 after the administration announced it will end a temporary subsidy program. (Gift Article) https://www.nytimes.com/2026/07/28/business/medicare-drug-subsidies-part-d.html?unlocked_article_code=1.1VA.3Nxp.9wgKp9zgEFOE&smid=url-share29 Jul 2026 19:15 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mrsn6f5s5s2khttps://bsky.app/profile/mecfssd.bsky.social/post/3mrsn5ppwvc2kNCNED Australian ME/CFS Registry Study: Analysis of 2,873 people w/ ME/CFS & 797 healthy controls from Australia's largest ME/CFS registry found substantially reduced quality of life & identified symptom clusters that may help define clinical subtypes. https://link.springer.com/article/10.1186/s12967-026-08618-929 Jul 2026 19:15 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mrsn5ppwvc2khttps://bsky.app/profile/mecfssd.bsky.social/post/3mrolipptds2wIncorrect link on NCNED ME/CFS/LC MRI study: Advanced MRI found distinct brain tissue microstructure changes in ME/CFS and long COVID compared w/ healthy controls which suggest altered white matter may contribute to symptoms inc. fatigue & brain fog. Correct link: https://www.frontiersin.org/journals/medicine/articles/10.3389/fmed.2026.1824498/full28 Jul 2026 04:35 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mrolipptds2whttps://bsky.app/profile/mecfssd.bsky.social/post/3mrolgonogs2w2024 Tufts CSDD study: finding enough participants is still one of the biggest barriers to successful clinical trials. Slow patient enrollment delays research, increases costs, and slows access to potential new treatments. https://link.springer.com/article/10.1007/s43441-024-00638-128 Jul 2026 04:34 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mrolgonogs2whttps://bsky.app/profile/mecfssd.bsky.social/post/3mroldbztus2w@sierraclub.org article on Wildfire Smoke including ME/CFS/LC Patient-Advocate lived experience: looks at why the tiny particles in wildfire smoke can worsen symptoms in people w/ underlying condition https://www.sierraclub.org/sierra/how-particulate-matter-wildfire-smoke-impacts-our-health28 Jul 2026 04:32 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mroldbztus2whttps://bsky.app/profile/mecfssd.bsky.social/post/3mrolbdh4xk2wADDitude ADHD Comorbidities Survey: studying the connections between ADHD and conditions including ME/CFS, MCAS, hypermobility, autonomic dysfunction, pain/fatigue syndromes, & autoimmune issues. https://us.list-manage.com/OWZbipsBXIQ?e=b70b46ec8f&c2id=06c6b7ca3c63ec291bebb0c38de4366428 Jul 2026 04:31 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mrolbdh4xk2whttps://bsky.app/profile/mecfssd.bsky.social/post/3mrol7l6lrk2w@batemanhornecenter.bsky.social Pediatric ME/CFS/LC Resources: Care Guide covers PEM, pacing, crash management, and school support. https://batemanhornecenter.org/wp-content/uploads/2026/07/Clinical-Care-Guide-First-Edition-2025-V7.5-1.pdf Webinar covers diagnosing and managing ME/CFS/LC in children. https://www.youtube.com/watch?v=no1a1A4tMfw28 Jul 2026 04:30 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mrol7l6lrk2whttps://bsky.app/profile/mecfssd.bsky.social/post/3mrokyjvq6k2w@rthm.bsky.social Dr. Putrino, Dr. Bateman, Dr. Curtin, & moderator Charlie McCone Webinar: how to best manage and treat PEM. Info on different types of PEM, how to navigate a crash, and interventions for reducing PEM. 8/6 2pm PST Sign up here: ow.ly/nAvg50ZtEb8 https://ow.ly/nAvg50ZtEb828 Jul 2026 04:26 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mrokyjvq6k2whttps://bsky.app/profile/mecfssd.bsky.social/post/3mrokqj3bx22wUnbound Global Premiere + Live Q&A: Created by an ME/CFS patient advocate, Unbound reflects the spectrum of ME/CFS through those able to participate and helps educate/raise awareness. Free online 11:30pm BST Wed 7/29 Q&A after https://www.eventbrite.com/e/unbound-global-premiere-live-qa-tickets-199098724945928 Jul 2026 04:21 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mrokqj3bx22whttps://bsky.app/profile/mecfssd.bsky.social/post/3mrg5d4kpu22eNCNED ME/CFS/LC MRI study: Advanced MRI found distinct brain tissue microstructure changes in ME/CFS and long COVID compared with healthy controls. Findings suggest altered white matter may contribute to symptoms including fatigue and brain fog. https://doi.org/10.3389/fneur.2026.180337424 Jul 2026 20:00 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mrg5d4kpu22ehttps://bsky.app/profile/mecfssd.bsky.social/post/3mrg5aw3mrc2eDysautonomia expert Svetlana Blitshteyn: highlights importance of taking orthostatic symptoms seriously in patients over 60, even when testing is inconclusive. The article includes her clinical observations of symptoms associated with different OI presentations. https://www.frontiersin.org/journals/neurology/articles/10.3389/fneur.2026.1803374/full24 Jul 2026 19:59 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mrg5aw3mrc2ehttps://bsky.app/profile/mecfssd.bsky.social/post/3mrg3ioo2g22e@solveme.bsky.social on ME/CFS and long COVID drug trials: Dr. Sadie Whittaker explains that without identifying patient subgroups most likely to respond, heterogeneous trial populations will continue to produce unclear results, limiting progress toward effective treatments. ow.ly/840850ZqVJ1 https://ow.ly/840850ZqVJ124 Jul 2026 19:27 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mrg3ioo2g22ehttps://bsky.app/profile/mecfssd.bsky.social/post/3mrg3grq6vs2e@meactnet.bsky.social Emergency Department Project: The project is now funded & launching to study why people with ME/CFS and long COVID seek emergency care in the US & their experiences in the ED/ER. Recruitment will open soon for diagnosed people who have visited an ED/ER in the past 10 years.24 Jul 2026 19:26 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mrg3grq6vs2ehttps://bsky.app/profile/mecfssd.bsky.social/post/3mrg3cnqmmc2eUpdated NINDS Multi-System Disorders Workshop registration link: 9/23-24 NIH hybrid workshop on advancing research & care across infection-associated conditions, neuroimmune dysfunction, autonomic dysfunction, genetics, & related disorders. new link: https://mregs.nih.gov/ninds/vf45-44z560624 Jul 2026 19:24 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mrg3cnqmmc2ehttps://bsky.app/profile/mecfssd.bsky.social/post/3mrg3bsjat22eKeyword-targeted biomedical research grant cancellations: Court filings show federal agencies used keywords to identify grants for termination, raising concerns of political interference in research funding & loss of support for research teams, & scientific progress. https://apnews.com/article/california-research-grants-terminated-keywords-lawsuit-a0ddb01413ecb68d9668490a20be620724 Jul 2026 19:23 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mrg3bsjat22ehttps://bsky.app/profile/mecfssd.bsky.social/post/3mrg2zthi2s2e@solveme.bsky.social at EDS & HSD Global Learning Conference: Solve will join the Comorbidity Corner at the 2026 conference, July 24–26 in Dallas and online, sharing ME/CFS resources. Use code GLC26CCM10 for 10% off registration. https://www.facebook.com/406687741496418/posts/145080417041809824 Jul 2026 19:19 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mrg2zthi2s2ehttps://bsky.app/profile/mecfssd.bsky.social/post/3mr6w7xvj3k2rMount Sinai @polybiorf.bsky.social CoRE Clinic Rapamycin Trial: Recruiting adults with physician-diagnosed LC in New York for a low-dose rapamycin trial to identify which LC subtypes benefit most. Open-label extension available after the 3-month trial. Email CoreResearch@MountSinai.org to register.21 Jul 2026 23:04 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mr6w7xvj3k2rhttps://bsky.app/profile/mecfssd.bsky.social/post/3mr6vvgnjdk2rPerioperative Outcomes in ME/CFS: First matched study of general anesthesia in ME/CFS found no clinically significant intraoperative instability, but patients had higher postoperative pain and opioid rescue needs. PEM was not assessed. https://link.springer.com/article/10.1186/s12871-026-04102-521 Jul 2026 22:58 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mr6vvgnjdk2rhttps://bsky.app/profile/mecfssd.bsky.social/post/3mr6vtnxem22rHEDGE Study update from 10/2025: Analysis of 1,021 genomes from people with hEDS (common ME/CFS comorbidity) found no single causative gene. Results suggest hEDS is likely polygenic, w/ TNXB explaining only a small subset & no evidence linking MTHFR. https://www.ehlers-danlos.com/hedge-study-update/21 Jul 2026 22:57 +0000at://did:plc:2j3foc3c2paae6txvbec2pff/app.bsky.feed.post/3mr6vtnxem22r