ME/CFS patients face rising barriers: ACA subsidies expire in 2025, research funding reduced, Medicaid cuts loom. Urge Congress to act now: extend subsidies, protect care access, fund research. Find your reps: www.congress.gov/members/find...

Dr. Alain Moreau study, with Montreal, Uppsala & @openmedf.bsky.social computational biology team, finds haptoglobin (Hp) drops after exertion in ME/CFS, linked to worse PEM & cognitive issues. Genetic Hp variants influence symptom severity. translational-medicine.biomedcentral.com/articles/10....

ME/CFS Patients, families, providers, and researchers are invited to take part in a global survey on case definitions and core symptoms. Help inform research and build consensus. May take ~30 mins. Survey: redcap.is.depaul.edu/surveys/?s=P...

TOMORROW! Join @scripps.edu Dr. Benjamin Cravatt on Sept 17 for a free online talk on turning “undruggable” disease targets into treatments. Discover how chemistry is reshaping drug discovery. 4PM PT | 7PM ET frontrow.scripps.edu/lectures/ben...

Join the NASEM virtual workshop Oct 22-23, 11am-3pm ET, on brain-body interactions & advancing brain health. Explore how brain-immune, brain-heart, & gut-brain links impact neurological & psychiatric diseases. Details: www.nationalacademies.org/event/45148_...

Sept 25 at 3PM ET: Join the #NotJustFatigue ME/CFS livestream briefing. 30 mins of research, lived experience & policy: featuring Dr. Lipkin, Ryan Prior, Elizabeth Ansell & more. Premieres video on Dr. Maureen Hanson's work. Register: www.notjustfatiguelivestream.org

Fall 2025 COVID-19 & Flu vaccines are here. This guide, created for the ME/CFS community, outlines current access issues: state rules, insurance basics, pharmacy limits, and key resources. www.reddit.com/r/mecfsSD/co...

Every U.S. state has a Protection & Advocacy (P&A) agency that defends the rights of people with disabilities: free, independent, and federally authorized. Find yours: acl.gov/programs/fin...

ME Research UK & ME Association have funded the next phase of a study at Brunel University exploring electrical differences in blood cells to develop a reliable, low-cost ME/CFS diagnostic test. Learn more: bit.ly/4pu2qXM

ProPublica’s deep dive into the SSA highlights decades of legacy systems, recent management upheaval, & ongoing modernization struggles, issues that affect disabled people who depend on timely and reliable benefits. www.propublica.org/article/inside-doge-social-security-takeover-leland-dudek

New study: fragments of Borrelia burgdorferi (Lyme bacteria) can linger in the liver for weeks, triggering immune and metabolic issues. May explain persistent symptoms after treatment (PTLDS). Similar mechanisms may apply to ME/CFS and Long COVID. www.the-scientist.com/fragments-of...

Starting Sept 30, 2025, the govt will stop mailing paper checks for Social Security, SSDI & SSI. ME/CFS patients must switch to direct deposit or Direct Express to keep benefits. Call SSA: 1-800-772-1213 or visit ssa.gov . Please share widely!

Extremely happy to see more ME/CFS awareness. In the 1980s, patients with debilitating fatigue were dismissed. Now, two new studies are bringing long-overdue credibility to ME/CFS. Published by @smithsonianmag.bsky.social: bit.ly/3UNqUNy

From Ron Davis: Stanford ME/CFS Collaborative Research Center Community Symposium on the Molecular Basis of ME/CFS Agenda September 5, 2025 8:00am - 2:30pm  Register: stanford.zoom.us/webinar/regi...

Big wins for ME/CFS in the Senate’s 2025 appropriations bills (via @solveme.bsky.social): * $5.4M for CDC ME/CFS program * NIH directed to implement ME/CFS Research Roadmap * Eligibility for $370M in CDMRP funding Next step: The House. Speak up: solvecfs.quorum.us/campaign/136...

The Community Symposium on the Molecular Basis of ME/CFS returns Sept 5, 8am–1pm PT on Zoom. Hosted by Ron Davis & Stanford Genome Technology Center. Virtual, free, open to the public. Register: stanford.zoom.us/webinar/regi...

Curious how scientists are reprogramming the immune system? Free virtual lecture on CAR-T therapies for cancer & autoimmune disease. Aug 20, 4 p.m. PT Speaker: Travis Young, PhD Not ME/CFS-specific, but relevant for those following immune research. Register: frontrow.scripps.edu/lectures/tra...

Mount Sinai’s Cohen Center has released a free clinical provider manual for diagnosing and managing conditions like Long COVID and ME/CFS. Get the IACI Provider Manual here: icahn.mssm.edu/research/coh...

The DecodeME study found significant genetic variations linked to ME/CFS but shows genes alone don’t cause it and doesn’t provide a diagnostic test or treatments. It offers important directions for future research and a valuable database. Preprint: www.research.ed.ac.uk/en/publicati...

The DecodeME study found significant genetic variations linked to ME/CFS but shows genes alone don’t cause it and doesn’t provide a diagnostic test or treatments. It offers important directions for future research and a valuable database. Preprint: www.research.ed.ac.uk/en/publicati...

NOW AVAILABLE ON YOUTUBE: Free Virtual Event: Ruby Tam Q&A on ME/CFS Care, Insights & Answers. Watch here: www.youtube.com/watch?v=qetu...

Do you or someone you know have Long COVID, ME/CFS, or POTS? The MN Dept of Health wants your input to shape the state’s response. 📣 Join focus groups, design sessions & surveys. 🔗 Sign up here: forms.office.com/Pages/Respon...

🎙️ ME/CFS Expert VIRTUAL Q&A with ME/CFS expert Dr. Ruby Tam 🗓️ Tues, Aug 5 | 🕕 6PM PT / 9PM ET 💬Q&A: ME/CFS Care, Insights, and Answers 🔗 Register: us06web.zoom.us/meeting/regi... 📺 Recording: youtube.com/@MECFSSD

📅 August at Bateman Horne Center (virtual & free): Aug 12, 1PM MDT – Managing Physical Symptoms Aug 19, 1PM MDT – From Shame to Pride Aug 21, 11:30AM MDT – Energy-Limited Resources Details: batemanhornecenter.org/events/

New Nature study (2025) shows sleep loss disrupts mitochondrial structure and ATP levels in energy-sensing brain neurons. Findings parallel ME/CFS biology: * Mitochondrial fragmentation * ATP depletion * Reduced neuronal excitability 🔗 www.nature.com/articles/s41...

The 2025 Federal Budget Law will end enhanced ACA subsidies & tighten enrollment, risking millions losing coverage, including many with ME/CFS. Without action, premiums could rise 75%+ in 2026. Is your insurance is ACA: www.mecfssandiego.com/mecfs-resour... More info: www.kff.org/affordable-c...

Medicaid & Medicare cuts in the new federal budget put ME/CFS patients & caregivers at serious risk. Home care, therapies & coverage threatened, work requirements add barriers. Read more: www.nytimes.com/2025/07/21/w... thehill.com/policy/healt...

Mitochondria do more than make energy, they help fight infections. New research shows they detect bacterial lactate & trigger neutrophils to release NETs that trap pathogens. More @ConversationUS : theconversation.com/mitochondria...

New preprint from Ian Lipkin’s team shows ME/CFS patients have a heightened immune response to exercise. The study reveals shifts in complement proteins and carnitines, offering new insights into how immune and metabolic dysfunction may drive post-exertional malaise. www.medrxiv.org/content/10.1...

New study tests IV saline in ME/CFS with dysautonomia. Saline, often a placebo in trials, showed some symptom relief but no objective improvements. Important to know saline’s effects to interpret drug trial results. Full study: www.frontiersin.org/journals/neu...

Work requirements could jeopardize coverage for U.S. ME/CFS Medicaid patients: 75% can't work, 25% are homebound. Exemptions require complex paperwork. Learn more: www.investopedia.com/what-medicai... Medicaid Program Names: www.mecfssandiego.com/mecfs-resour...

Register now for the July 31 webinar at 12 PM PT / 3 PM ET hosted by Solve M.E., featuring Dr. Akiko Iwasaki discussing her study, “Probing Functional Autoantibodies in Patients with ME/CFS.” 👉 ow.ly/eVNv50VReaH

Whitney Dafoe’s powerful new post is a call to awareness, action, and compassion for people living—and dying—with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. 📝 Read: www.whitneydafoe.com/mecfs/?post=... 🎧 Audio version also available: www.whitneydafoe.com/mecfs/audio/...

🎶 On Aug 2, soul & funk band Odyssey plays Key West Bournemouth to raise funds for the Ramsay Research Fund supporting ME research. Organized by Steve Heald, who has lived with ME for 38 years. More info: www.bournemouthecho.co.uk/news/2530666...

In the Netherlands, the Central Appeals Tribunal (CRvB) ruled that the UWV benefits agency was wrong to tell several ME patients they could work much of the week or full-time. Read more: nos.nl/artikel/2575...

Webinar Tomorrow! 🚨 Join solveME on July 22 @ 3PM PT / 6PM ET for a deep dive into the ADDRESS-LC trial studying bezisterim’s impact on brain fog & fatigue in Long Covid. Hear from experts & learn how to participate! 🔗 Sign up: ow.ly/lhSa50WiKu0

Long COVID clinics closing in the UK & US means fewer specialists trained in post-viral illnesses like ME/CFS, less access to care, and greater strain on general doctors. This risks leaving many patients without the support and treatment they urgently need. More here: www.reddit.com/r/mecfsSD/co...

Calling all artists! Submit your work for ME Advocates Ireland’s online art exhibition for Severe ME Day (Aug 8). Show your experience or support for the ME/CFS community. Deadline July 25. Details & submissions: [email protected]

New survey from a Eastern Washington U Researcher: Share your housing challenges if you have chemical sensitivities (MCS/TILT). Just 26 quick questions to help identify housing needs & support safer, accessible solutions. 📝 Take it here: www.surveymonkey.com/r/housingmcs

New ME/CFS biomarker: A large study finds SMPDL3B, a gene involved in immune-regulating lipid metabolism, is altered in ME/CFS patients (Canada & Norway). Blood-based, it could aid diagnosis & treatment. More research needed, but promising. 📄 translational-medicine.biomedcentral.com/articles/10....

Nature: Study finds ME/CFS alters brain chemistry & metabolism, especially after exercise triggers post-exertional malaise. Changes in energy use, cell repair, folate, & brain lipids help explain symptom worsening. Read more: www.nature.com/articles/s41...

The CureME team at the ME/CFS Biobank is hosting a webinar on July 21 at 2 pm BST. Dr. Luis Nacul will discuss a clinical trial of naltrexone for ME/CFS. A recording will be available after the event. Register here: tinyurl.com/9857pbue

New review preprint links T cell exhaustion to ME/CFS & Long COVID. Chronic immune dysfunction, marked by exhausted T cells, viral persistence & neuroimmune disruption, may drive symptoms like fatigue & brain fog. Read: www.qeios.com/read/YDRIR2

Just published (preprint posted earlier) in PNAS: @openmedf.bsky.social ’s patient-led study on ME/CFS & Long COVID treatments! 🔬3,900+ patients 💊 150+ treatments analyzed 📊 Real-world outcomes from the TREATME survey 🧠 Data-driven insights for future research 🔗 www.pnas.org/doi/abs/10.1...

Updated ME/CFS & School resources from @mecfssd.bsky.social K–12: www.mecfssandiego.com/mecfs-and-sc... College+: www.mecfssandiego.com/mecfs-and-sc... More: www.mecfssandiego.com/mecfs-and-sc...

Join us July 31 @ 12 PM PT / 3 PM ET for a webinar with Dr. Akiko Iwasaki on her ME/CFS study revealing functional autoantibodies that may drive symptoms like fatigue & brain fog. 🔗 Register: ow.ly/eVNv50VReaH 📖 Study: pubmed.ncbi.nlm.nih.gov/40373264/

New study shows distinct brain white matter differences in ME/CFS subtypes! 🔹 Post-infectious ME/CFS: higher axial diffusivity linked to worse physical health 🔸 Gradual onset ME/CFS: lower axial diffusivity linked to worse mental health Full open access 👉 www.nature.com/articles/s41...

New antibody (BiTS) calms harmful immune cells without broad immunosuppression. Tested in mice with type 1 diabetes, autoimmune hepatitis & MS. May help ME/CFS patients with immune overactivity and inflammation. Read more: medicalxpress.com/news/2025-06...

New article by Dr. Andrew Monteith reveals mitochondria in immune cells can sense bacteria and trigger “immune traps” (NETs). This discovery links metabolism & immunity, important for ME/CFS research. Read more 👇 theconversation.com/mitochondria...

🏆 Nominate ME/CFS heroes for the 2026 @ResearchAmerica Advocacy Awards! Clinicians, researchers, advocates & more, help us honor those making a difference. Deadline: July 31, 2025 🔗 www.researchamerica.org/advocacy-awa...