ME/CFS San Diego

@alexandrer81988 @opus__33 @tabler_tim @loscharlos reversinglongcovid.org for those talking about JAK inhibitors like Baricitinib: a major Phase 3 trial (REVERSE-LC) is now enrolling to study its impact on neuro-symptoms. If you have LC-triggered ME/CFS, there are 18 U.S. enrolling sites

@opus__33 @tabler_tim @MECFSSD @loscharlos Yes need more than that. Yes Andorra is very known for that and you sure about the price and the quality if drugs. It is like going to our pharmacies here you get the drugs from the big pharmaceutical companies.

Advanced brain imaging shows widespread white-matter neuroinflammation in ME/CFS, with tissue swelling, immune cell infiltration & nerve fiber reorganization across key brain pathways correlated with greater disability, even when standard MRIs look normal. onlinelibrary.wiley.com/doi/full/10.10…

@alexandrer81988 @opus__33 @tabler_tim @loscharlos Seeing 'nerve reorganization' is daunting, but it’s not permanent cell death. This study identifies active neuroinflammation, swelling and immune movement, which are treatable targets. These data help prioritize the clinical trials needed to prove safe, effective therapies.

💙 Help us raise awareness for ME/CFS this May! We’re preparing for May awareness month and May/12 & need individuals to help distribute ribbons + makers to create them. Groups and Organizations: Please partner with us to expand our reach. DM or email info@mecfssandiego.com 💙

@TWestphalia :(

@MECFSSD And no help for all these young people in utter daily hell. Suicides weekly. What a brutal world this is.

@PlzSolveCFS & @MEActNet Advocacy Week (Mar 23–26): Kickoff & strategy session; patient safety/regulatory outreach; federal social media day-contact Congress; state medical board & health leadership outreach. Participate as you’re able: docs.google.com/forms/d/e/1FAI…

@BatemanHorne Crash Survival: Prepping for a ME/CFS crash or caregiving for someone in one? Bateman Horne Center has resources: ME/CFS Crash Survival Guide, Health Information Sheets, Medication Sheets, and Communication Cards batemanhornecenter.org/education/mecf…

ME/CFS Science post on social media fake science: Be cautious with viral “science news” pages like It’s Science posting AI-generated content mixing real terms (e.g., Faecalibacterium prausnitzii, ME/CFS) with fabricated studies. facebook.com/permalink.php?…

@Squashedhedgi @LauraCayuela7 megenetics.org.uk/our-projects/s… Yes - they are working on getting more funding but currently only have seed funding.

@MECFSSD @LauraCayuela7 this is still without most of the funding it requires to proceed isn’t it?

A new £20 million global research initiative called Sequence ME & Long Covid has launched to perform long‑read, whole‑genome sequencing in people with ME/CFS and Long COVID to uncover genetic biomarkers and better understand disease mechanisms. actionforme.org.uk/sequence-me-lo…

For FY 2026, the U.S. Department of Defense’s Congressionally Directed Medical Research Programs (with a $370 million Peer Reviewed Medical Research Program) ME/CFS has been included, meaning researchers can apply for federal grants. congress.gov/crs-product/IF…

The @MEActNet, @Notjustfatigue , and @PlzSolveCFS sent a joint letter to the Senate Appropriations Subcommittees requesting at least $50 million to begin implementing the NIH’s ME/CFS Research Roadmap in the FY27 Labor HHS bill. meaction.net/post/meaction-…

@polybioRF new "Lab Visits" Series: First video in series has Michael VanElzakker, who discusses his research on drivers of neuroinflammation in Long COVID and ME/CFS using advanced dual PET-MRI imaging. youtube.com/watch?v=0aiCk2…

@MEActNet has sent a letter to Medicaid Directors in 42 states and Washington, D.C., urging them to recognize these illnesses as serious or complex medical conditions so patients can be exempt from new work requirements. ow.ly/YU8350YsAzg sign a letter too!

Immune signaling, in mouse models, during infection (especially IFN-γ) can induce persistent epigenetic changes in neurons that suppress synaptic genes and leave lasting synaptic dysfunction, even after inflammation resolves. cell.com/neuron/fulltex…

Norwegian controlled long-COVID study (~15 months post-infection) found no elevation in NfL, GFAP, TREM2, or inflammatory markers vs controls arguing against ongoing neuroinflammation or neuronal injury as driver. nature.com/articles/s4159…

rthm.com/resources/blog… A collaboration between Patient-Led Research and RTHM - Long COVID Treatment guide based on pubmed.ncbi.nlm.nih.gov/40627388/ Patient-reported treatment outcomes in ME/CFS and long COVID

REenergizeME (NCT07317401) at Aarhus University in Denmark, is studying intermittent hypoxia-hyperoxia therapy (IHHT). Eligibility: women aged 20–59 with mild-to-moderate ME/CFS who can participate in Aarhus, Denmark, 6-week treatment period clinicaltrials.gov/study/NCT07317…

@OpenMedF Resource Center: OMF provides educational resources for healthcare workers and the public to better understand ME/CFS. Explore materials here: #doctor" target="_blank" rel="nofollow noopener">omf.ngo/resource-cente…

Four Distinct ME/CFS clusters PREPRINT: researchsquare.com/article/rs-831… found that ME/CFS symptoms naturally group into four distinct clusters: Brain (cognitive, sleep, and sensory ), Gut (digestive), Immune (infection‑related ), and Vegetative (autonomic/dysautonomia).