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mecfssd.bsky.social
ME/CFS San Diego
@mecfssd.bsky.social
1.5K followers 41 following 240 posts
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.
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Federal funding bill update:
Medicare telehealth extended until 1/31/2026
NIH & health agencies funded at last year's levels
Community Health Centers & workforce programs funded

Missing:
No permanent telehealth reform
No new ME/CFS research funding
ACA tax credits not included
Federal Funding Bill UPDATE Some ME/CFS Impacts
November 14, 2025 at 11:53 PM
mecfssd.bsky.social
Important SNAP Update for ME/CFS – Nov 2025:
USDA ordered states to undo full SNAP payments. Partial benefits are valid; full payments may be disputed. The ME/CFS community urgently needs stable SNAP, affordable ACA coverage, and reliable telehealth. Contact legislators: www.usa.gov/elected-offi...
SNAP Program Cover Image
November 9, 2025 at 10:53 PM
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ME/CFS virus study: www.medrxiv.org/content/10.1...
. Varicella-Zoster Virus (VZV) found in 6 of 17 patients, none in controls. Limitations: only plasma and DNA tested, small sample size, may miss latent/reactivating viruses.
Figure 2. Virus sequences detected in each clinical sample. This figure presents a heatmap of those molecular probes which are significantly enriched. The rows correspond to individual probes. The right labels present the virus name. The columns correspond to the individual clinical samples. The top color bar indicates the group (blue, negative controls [water reacted with the probe ensemble; no DNA present]; pink, ME/CFS patients; green, healthy controls.) The bottom labels give the identification of each clinical sample. Cell colors indicate the presence or absence of the molecular probe in the sample (red, presence; white, absence).
November 9, 2025 at 10:01 PM
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@BatemanHorne's November Support Groups offer safe, understanding spaces for people with ME/CFS, IACCs, & loved ones.
Nov 11: Denial, Resistance & Gaslighting: batemanhornecenter.zoom.us/meeting/regi...
Nov 18: Acquainted with Grief: batemanhornecenter.zoom.us/meeting/regi...
Bateman Horne Center Research | Clinical Care | Education November 2025 Support Group Events
November 6, 2025 at 12:53 AM
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Attention #UCSD students! Enter the 2nd Annual ME/CFS Essay Contest hosted by @MECFSSanDiego! Share your ideas about a future where people with ME/CFS can truly thrive. Prizes, publication opportunities & more! Deadline: 12/31/25

Details & entry: bit.ly/mecfsSDessay
ME/CFS San Diego's 2025-2026 UCSD Essay Contest DEADLINE FOR SUBMISSION DECEMBER 31, 2025 Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) is a complex, multi-systemic, and disabling disease. Despite affecting millions of people, ME/CFS remains severely under- diagnosed, underfunded, and widely misunderstood. Cash Prizes of up to $500 with the winning essay published in leading ME/CFS newsletters sites, and blogs For more information, please visit ME/CFS San Diego Essay Contest https://bit.ly/mecfsSDessay OPEN TO ALL CURRENT UCSD STUDENTS
October 22, 2025 at 9:08 PM
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DePaul University is running a second survey to help develop a tool to assess Post-Exertional Malaise (PEM) in ME/CFS.
Open to adults 18+ globally both those with PEM AND healthy controls.
Takes ~10–15 mins. www.dsqpem2.com
DePaul University is running a second survey to help develop a tool to assess Post-Exertional Malaise (PEM) in ME/CFS. Open to adults 18+ globally both those with PEM AND healthy controls. Takes ~10–15 mins. www.dsqpem2.com
October 8, 2025 at 7:59 PM
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Researchers at UEA & Oxford BioDynamics have developed a potential blood test for #MECFS with 96% diagnostic accuracy (92% sensitivity, 98% specificity). Early days, but could be a breakthrough. More validation needed.
www.uea.ac.uk/about/news/a...
New study by University of East Anglia (UEA), in collaboration with Oxford BioDynamics announces potential blood test for ME/CFS
October 8, 2025 at 7:04 PM
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October Support Groups @batemanhornecenter.bsky.social for ME/CFS, Long COVID, and related conditions

Oct 14 1pm MDT Navigating the Complex Healthcare Industry
batemanhornecenter.zoom.us/meeting/regi...

Oct 21 1pm MDT Parenting with Chronic Illness
batemanhornecenter.zoom.us/meeting/regi...
Bateman Horne Center Research | Clinical Care | Education Support Group Events
October 7, 2025 at 2:59 AM
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Coffee with a Clinician: new free series from Bateman Horne Center
Next session: Navigating Clinical Uncertainty
Oct 8, 10 AM MDT
For ME/CFS, Long COVID, IACCs
Register: batemanhornecenter.zoom.us/meeting/regi...

Will be recorded
Knowledge Shared LIVES CHANGED Medical Education. Research. Clinical Expertise. "Coffee" with a Clinician A Free BHC Community Event NEW MONTHLY SERIES Bateman Horne Center is excited to launch Coffee with a Clinician, a new BHC series designed to share practical, evidence-informed guidance on ME/CFS, Long COVID, and other infection- associated chronic conditions (IACCS) that you can share with your medical provider.
October 7, 2025 at 2:45 AM
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Today’s the LAST DAY of ME/CFS San Diego’s Days of Giving 2025 💙

We fundraise once a year to power awareness, education & advocacy for ME/CFS.

Every share or dollar helps.

Give: www.mecfssandiego.com/support-mecf...

Watch: youtube.com/@mecfssd
ME/CFS SAN DIEGO DAYS OF GIVING 2025 4 Days of Fuel for Awareness and Hope ME/CFS San Diego's goal is to raise awareness of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), educate, and advocate for access and services. We would love it if you would choose to donate to ME/CFS San Diego this year. When: October 2-5 2025 Time: All day How: Type in the link below: https://www.mecfssandiego.com or scan the QR code
October 5, 2025 at 3:49 PM
mecfssd.bsky.social
This year has been especially hard for our ME/CFS San Diego team. Like many in our community, I’ve had worsening symptoms and limited capacity. So we’re keeping our annual fundraiser simple.
If you’re able, please support: www.mecfssandiego.com/support-mecf...
MILLIONS are MISSING Myalgic Encephalomyelitis San Diego ME/CFS This is ME #Change ME/CFS SAN DIEGO DAYS OF GIVING 2025 3 Days of Fuel for Awareness and Hope ME/CFS San Diego ME/CFS San Diego's goal is to raise awareness of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), educate, and advocate for access and services. We would love it if you would choose to donate to ME/CFS San Diego this year. When: October 2-5 2025 Time: All day How: Type in the link below: https://www.mecfssandiego.com or scan the QR code
October 2, 2025 at 6:15 PM
mecfssd.bsky.social
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...
Contact representatives now to: * Extend ACA premium subsidies. * Support ME/CFS research and PRMRP budget. * Oppose Medicaid cuts. (Image of Congress Building)
September 18, 2025 at 8:42 PM
mecfssd.bsky.social
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...
GLOBAL SURVEY: Can we reach consensus on an ME research case definition? ME/CFS Patients, Families, Healthcare Providers, and Researchers are welcome!
September 16, 2025 at 9:15 PM
mecfssd.bsky.social
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...
Wednesday, September 17, 2025 4:00 p.m. PT | 7:00 p.m. ET Benjamin Cravatt, PhD Professor, Norton B. Gilula Chair in Biology and Chemistry, Department of Chemistry Scripps Research Front Row lecture series Expanding the drug target universe
September 16, 2025 at 8:50 PM
mecfssd.bsky.social
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_...
National Academies Science Engineering Medicine Understanding Brain-Body Interactions to Advance Brain Health: A Workshop (October 22-23, 2025 | 11 am to 3 pm ET)
September 16, 2025 at 8:39 PM
mecfssd.bsky.social
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
(A screenshot from the event page: with a banner with the text "On the Human and Economic Burden of ME/CFS, the NIH Research Roadmap," #NotJustFatigueLivestream, This event is scheduled for September 25 - with a background of a scientist looking at a test tube.) This first-of-its-kind livestream briefing puts policymakers face-to-face with the lived reality of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)—a complex, disabling disease that has too often been overlooked by federal institutions. While many people with ME/CFS are too sick to travel to Washington or participate in traditional advocacy, this virtual event bridges that gap—featuring direct testimony from leading researchers, award-winning journalists, and patients themselves. In just 30 minutes, attendees will gain a clear, personal, and scientific understanding of what’s happening in the field, why the NIH’s ME/CFS Research Roadmap matters, and how Congress can help accelerate meaningful progress.
September 12, 2025 at 3:05 AM
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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...
Vaccine syringe drawing clear fluid
September 12, 2025 at 1:21 AM
mecfssd.bsky.social
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...
P&A Protection & Advocacy Logo
September 10, 2025 at 7:46 PM
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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...
8:00am Ronald W. Davis, Stanford – Opening Remarks Moderator: Vanessa Velasco, Stanford 8:15am Joshua Dibble, Edinburgh – TBA 8:45am Robert Phair, Integrative Bioinformatics – DecodeME GWAS findings; Itaconate Shunt in ME/CFS 9:15am Randall Peterson, Utah – Zebrafish models of metabolic fatigue 9:45am Baldomero Olivera, Utah – Drug discovery strategies for ME/CFS 10:15am Robert Naviaux, San Diego – Mitochondrial signals, salugenesis, ME/CFS 10:45–11:00am Break 11:00am Brayden Yellman, Bateman Horne – Co-morbidities in ME/CFS 11:30am David Systrom, Harvard – Repurposed drugs for ME/CFS and Long COVID 12:00pm Wenzhong Xiao, Harvard – ME/CFS and Long COVID treatment survey 12:30pm Vanessa Velasco, Stanford – Neutrophils in ME/CFS 1:00pm Michelle James, Stanford – Inflammation, mitochondrial dysfunction via PET/MR imaging 1:30pm Speaker Panel – Closing Discussion 2:15pm Ronald W. Davis – Closing Remarks Ends 2:30pm
August 27, 2025 at 6:39 PM
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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...
DecodeME Manhattan Plot of Identified SNPs
August 14, 2025 at 11:45 PM
mecfssd.bsky.social
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...
DecodeME Manhattan Plot of Identified SNPs
August 14, 2025 at 11:44 PM
mecfssd.bsky.social
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...
Virtual Myalgic Encephalomyelitis & Chronic Fatigue (ME/CFS) Group ME/CFS Expert Event Ruby Tam ME/CFS Clinician Founder, MN ME/CFS Clinic Perrin Technique Practitioner Video Talk now available at QR Code or at https://www.youtube.com/watch?v=qetuPjkA7PI Theme of Talk: Q&A: ME/CFS Care, Insights, & Answers https://www.youtube.com/@MECFSSD/videos for other ME/CFS Expert Events
August 6, 2025 at 11:25 PM
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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...
MN Department of Health Do You or Someone You Know Want to Help Shape MN’s Response to Post-Viral Chronic Conditions such as Long COVID and ME/CFS. (with a yellow sillouette of MN in the background)
August 6, 2025 at 6:39 AM
mecfssd.bsky.social
🎙️ 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
ME/CFS Expert VIRTUAL Zoom Event Reminder: Ruby Tam Q&A: ME/CFS Care, Insights, and Answers Date: Tuesday, August 5, 2025 Start Time: 6:00 PM PT / 8:00 PM CT / 9:00 PM ET / 1:00 AM GMT (Wednesday, August 6) Dr. Ruby Tam, DO Board-Certified Family Medicine Physician Certified Perrin Technique Practitioner Founder, ME/CFS Clinic MN Recording of this event (along with past talks) will be available at: https://www.youtube.com/@MECFSSD
August 5, 2025 at 7:13 PM
mecfssd.bsky.social
📅 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/
August Events at Bateman Horne Center This month’s support groups and peer-led gathering offer space for connection, insight, and community. Support Groups: * Tuesday, Aug 12, 1:00 PM MDT Managing Physical Symptoms: Cognitive Issues, Sleep Disturbance, Chronic Pain, Fatigue, and Disability * Tuesday, Aug 19, 1:00 PM MDT Moving from Humiliation and Shame to Humility and Pride Peer Perspectives & Connections Thursday, Aug 21, 11:30 AM MDT Resources for When Energy is Limited
August 2, 2025 at 4:37 AM