ME/CFS San Diego
@MECFSSD
Followers
266
Following
558
Media
125
Statuses
932
ME/CFS San Diego are patients and/or caregivers sharing information, support for each other, and education about Myalgic Encephalitis/ Chronic Fatigue Syndrome
San Diego, CA
Joined July 2020
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 Please share widely!.
ssa.gov
Official website of the U.S. Social Security Administration.
0
0
0
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:
smithsonianmag.com
Two studies present new data on ME/CFS, offering "credibility and validity" to the experiences of patients struggling with symptoms
0
2
4
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:
0
8
27
Big wins for ME/CFS in the Senate’s 2025 appropriations bills - Thank you @Solve_CFS:.* $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. Contact your Rep:
solvecfs.quorum.us
The Senate included critical ME/CFS and Long COVID provisions in its FY26 spending bills—now we need the House to keep them. Call your Representative and urge their support for these life-changing...
3
5
22
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
The Stanford Genome Technology Center will be hosting a virtual Community Symposium on Friday, September 5th from 8:00am-2:30pm (PST)! You will have the opportunity to hear from speakers who will...
2
8
23
Free Scripps Research Front Row Series 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
Your immune system is your body’s natural defense, capable of identifying what belongs and what doesn’t. But when it falters, it can let cancer grow unchecked or mistakenly attack your own healthy...
0
0
0
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
Learn about resources at the Cohen Center for Recovery from Complex Chronic Illness. Stay updated on research and treatment options for chronic illnesses.
1
0
1
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:
research.ed.ac.uk
0
0
2
NOW AVAILABLE ON YOUTUBE: Free Virtual Event: Ruby Tam Q&A on ME/CFS Care, Insights & Answers. Watch here:
0
1
2
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:
0
0
0
🎙️ 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: 📺 Recording:
0
3
7
📅 August at @BatemanHorne (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:
0
0
1
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. 🔗
nature.com
Nature - Research on Drosophila neurons shows links between the need to sleep and aerobic metabolism, indicating that the pressure to sleep may have a mitochondrial origin.
2
9
33
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: More info:
kff.org
Enhanced premium subsidies were first made available under the American Rescue Plan Act and extended until the end of 2025 under the Inflation Reduction Act. This analysis shows the impact that...
0
0
0
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:.
thehill.com
Medicaid cuts under President Trump’s sweeping tax and spending package will harm family caregivers, experts warn, by reducing access to health care for themselves and the people they care for…
1
1
3
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
Not only do mitochondria serve as the engine of the cell – they also act as watchtowers for the immune system.
0
5
14
New preprint from Ian Lipkin’s team: ME/CFS patients have a heightened immune response to exercise. The study reveals shifts in complement proteins & carnitines, offering insights into how immune & metabolic dysfunction may drive post-exertional malaise.
1
14
25
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:
frontiersin.org
PurposeMyalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a debilitating condition with no single, uniformly effective pharmacologic therapy. Dys...
0
0
0
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:.Medicaid Program Names:
mecfssandiego.com
July 24, 2025 Understanding Medicaid, Medicare, and CHIP Why this matters: Many people in the U.S. living with ME/CFS are on, or eligible for, Medicare, Medicaid or CHIP. Medicare is the same in...
1
13
26