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mecfssd.bsky.social
ME/CFS San Diego
@mecfssd.bsky.social
1.5K followers 41 following 260 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.
Posts Replies Media Videos
mecfssd.bsky.social
As U.S. healthcare is debated, a simplified, cost‑controlling national framework could cut $450B+ annually, expand access/care continuity, support earlier diagnosis & evidence-based care for ME/CFS patients. Contact your congress members to champion reforms: www.congress.gov/members/find...
How a Simplified Healthcare Framework Helps ME/CFS Patients Expanded Medical Access Reduced Reliance on Emergency Care Evidence-Based Clinical Guidelines Earlier Diagnosis Continuity of Care Multidisciplinary Symptom Management Reduced Financial Stress
December 12, 2025 at 2:19 AM
mecfssd.bsky.social
@solveme.bsky.social "What’s New in ME CFS" features Dr Peter Rowe discussing replicated findings on hypermobility & restricted motion, clinical TOS observations, gentle PT to avoid PEM, Long COVIDs research boost, LDN&GLP 1 interest & rapamycin, & the need for cromolyn trials. youtu.be/zA3YV-D0NZk
What's New in ME/CFS? Interview with Dr. Peter Rowe
YouTube video by SolveME
youtu.be
December 11, 2025 at 7:14 PM
mecfssd.bsky.social
75% of people with ME/CFS are unable to work, an 80-hour/month requirement is impossible and dangerous. @meactnet.bsky.social is urging HHS to protect our community by recognizing us as “medically frail.”
Sign the letter: actionnetwork.org/petitions/fr...
Protect Medicaid for People with ME/CFS and Long COVID
New Medicaid work rules will take effect at the end of 2026. Our care and support systems have long been rigged against disabled people, and these new paperwork rules will push even more sick people o...
actionnetwork.org
December 9, 2025 at 6:32 PM
mecfssd.bsky.social
Expecting someone with ME/CFS to minimize illness, saying 'I’m healing' instead of 'I’m sick', erases reality, victim blames, and makes it harder for others to understand and support us. But the catch-22 is, it’s hard to speak up when we’re chronically ill and energy-deficient.
An image of a chronically ill patient holding a drink with a blanket around their shoulders in a dark room with a piece of paper on a table with medications, a pill bottle, a glass of water. The piece of paper has "ME/CFS is hard." written on it.
December 9, 2025 at 12:21 AM
mecfssd.bsky.social
@solveme.bsky.social launches its new “What’s New in ME/CFS” video series with first guest Prof. Chris Ponting. He shares why DecodeME is a major step forward—and why much more science is still to come. Watch here: www.youtube.com/watch?v=26Eg...
What's New in ME/CFS? Interview with Dr. Chris Ponting
YouTube video by SolveME
www.youtube.com
December 8, 2025 at 9:07 PM
mecfssd.bsky.social
Congratulations to Kieran Gharti, winner of the @actionforme.bsky.social 2025 Medical Student Essay Competition! Kieran, a third-year MBChB Medicine student at @UoMMedicine, highlighted the urgent need for more research into ME/CFS in his winning essay.
A photo of Kieran Gharti, a third-year MBChB Medicine student at the University of Manchester, standing in a casual setting with a bookshelf in the background. Kieran is wearing a grey medical scrub and smiling at the camera. The image includes graphics and text that read "The winner of our Medical Student Essay Competition is… Kieran Gharti!" and information about his current studies. The bottom of the image features the slogan “Improving lives and accelerating understanding” with the Action for M.E. logo.
December 5, 2025 at 7:40 AM
mecfssd.bsky.social
UC San Diego students (undergraduate through post-doc): The ME/CFS Essay Contest deadline is 12/31/2025. Submit your ideas on how to create a future where people with ME/CFS can truly thrive. Prizes up to $500!
Learn more and submit: bit.ly/mecfsSDessay
A flyer for “ME/CFS San Diego’s 2025–2026 UCSD Essay Contest.” The headline reads: “Design a Future Where People with ME/CFS Can Truly Thrive.” The deadline for submissions is December 31, 2025. A description explains that Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is a complex, disabling, and under-recognized disease. A hand holds a pencil next to a word bubble that says: “Let’s reimagine life with ME/CFS… my ideas, their future. A more accessible life for ME/CFS patients.” The flyer includes a QR code linking to more information, notes that cash prizes are up to $500 and winning essays may be published, and shows the ME/CFS San Diego logo. Text at the bottom states the contest is open to all current UCSD students.
December 5, 2025 at 6:19 AM
mecfssd.bsky.social
Chronic absenteeism and behavioral changes can look like anxiety or depression, but may signal undiagnosed ME/CFS or other Infection-Associated Chronic Conditions (IACCs). Recognizing this possibility is key: www.psychologytoday.com/us/blog/expr...
Is Your Child's Behavior Actually a Sign of Neuroinflammation?
When the immune system attacks the brain, behavior is a symptom, not defiance. Kids with neuroimmune disease are falling through the cracks while parents beg to be heard.
www.psychologytoday.com
December 4, 2025 at 11:25 PM
mecfssd.bsky.social
@batemanhornecenter.bsky.social virtual support: Tues, Dec 9, Managing Holidays with Chronic Illness, moderator Meredith Mehner, LCSW batemanhornecenter.zoom.us/meeting/regi... & Tues, Dec 16, Freedom from Thinking Traps, moderator Timothy Weymann, LCSW batemanhornecenter.zoom.us/meeting/regi...
Bateman Horne Center Support Group Events (Bateman Horne Graphics)
December 4, 2025 at 9:25 PM
mecfssd.bsky.social
Bateman Horne Center December “Coffee” with a Clinician: Pacing for Holidays and Special Events. Wednesday, December 10 at 10:00 am MST (9 am PT / 11 am CT / 12 pm ET). Amy Mooney, MS OTR/L, Melinda Maxwell, PT, moderated by Clayton Powers, DPT. Register: batemanhornecenter.zoom.us/meeting/regi...
Bateman Horne "Coffee with a Clinician" free virtual event series
December 4, 2025 at 9:15 PM
mecfssd.bsky.social
New DecodeME/PrecisionLife preprint finds 22k genetic signatures + 259 core genes in ME, implicating neuro, immune, stress-response & Ca²⁺ pathways, overlap to long COVID. Strong evidence for a polygenic, heterogeneous disease. Early but important.
medrxiv.org/content/10.64898/2025.12.01.25341362v2
Figure 3. Analytical pipeline for Discovery and Refinement of disease signatures and Testing of signature count score for ME. The Discovery and Refinement datasets are illustrated in Figure 1. These processes are described further in the Supplementary Methods section.
December 4, 2025 at 7:45 PM
mecfssd.bsky.social
ME/CFS makes every symptom a puzzle. A rough MCAS flare + weird insulin resistance (T1D) turned out to be from Smart Balance quietly adding pea protein isolate. If you’re suddenly reacting to trusted foods, check for ingredient changes. Hope this helps someone.
MCAS Heads up! Unfortunately changed ingredients lists are not always well-advertised (includes an old and new ingredient list for Smart Balance Original Spread)
December 3, 2025 at 8:36 PM
mecfssd.bsky.social
A psychology student at the University of Hull is recruiting English-speaking ME/CFS patients for a study on the psychological impact and lived experience of ME/CFS. Not a BPS causation study. Anonymous 20-min survey: run.pavlovia.org/pavlovia/sur...
A recruitment poster from the University of Hull titled “Participants needed.” The poster states that the study involves completing an online survey that takes less than 20 minutes and includes questions about CFS symptoms, self-perception, and current mood. Eligible participants are adults (18+) who are diagnosed with, or awaiting diagnosis of, Chronic Fatigue Syndrome and can read and write English. To take part, individuals are instructed to click the link provided in the accompanying post to access the information sheet and survey. The poster notes that all information is anonymous. Contact details listed are the researcher’s email, e.mark-2022@hull.ac.uk , and the dissertation supervisor’s email, Rachel.Anderson@hull.ac.uk . The University of Hull logo appears at the bottom.
December 2, 2025 at 9:52 PM
mecfssd.bsky.social
New study finds LC patients who meet ME/CFS criteria show two distinct patterns. The small cohort means these differences could reflect sex or ME/CFS subtypes. Study suggests LC+ME/CFS is not biologically uniform and future trials may need stratification. www.sciencedirect.com/science/arti...
Integrated immune, hormonal, and transcriptomic profiling reveals sex-specific dysregulation in long COVID patients with ME/CFS
Long COVID (LC) manifests with sex-specific differences, particularly in those with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Our s…
www.sciencedirect.com
November 23, 2025 at 6:49 PM
mecfssd.bsky.social
A new brain imaging study shows that chronic energy metabolism and neuroinflammatory abnormalities are detectable in GWI patients only with short echo time MRS. Future ME/CFS research may need short echo time MRS to reveal brain energy abnormalities. www.nature.com/articles/s41...
Acquisition of spectra from a Gulf War veteran with LC Model to estimate concentrations of N-acetylaspartate (NAA), total creatine (tCr) and choline (Cho). (A) Spectroscopy voxel positioning in the right basal ganglia. (B) A 3T 1H-MR spectrum (TE = 30 ms) of the left basal ganglia of a representative subject processed using LC Model. Metabolites detected with acceptable reliability are shown in bold font in the table on the right.
November 22, 2025 at 8:32 PM
mecfssd.bsky.social
Join the LC-REVITALIZE Long COVID Study!

Adults 18–65 with persistent Long COVID can participate in San Diego ([email protected]
| 619-324-8677) or 7 other global sites. 6 months, 8 visits, FDA-approved drugs tested. Reimbursement provided.

clinicaltrials.gov/study/NCT069...
Long COVID Clinical Research Treatment Study at Family Health Centers of San Diego. Researchers are recruiting adults diagnosed with or experiencing signs of Long COVID to participate in the LC-Revitalize study. The study tests FDA-approved drugs upadacitinib and pirfenidone to determine their safety and effectiveness. Participation lasts six months and includes eight visits with physical assessments, blood draws, questionnaires, and evaluation of cardiovascular and pulmonary health. Participants will be reimbursed for completed visits. Eligible participants must be 18 to 65 years old, able to provide consent in English or Spanish, and have had COVID-19 within the past four years, confirmed by PCR, antigen test, or probable infection with epidemiologic link. Participants must have persistent or new Long COVID symptoms for at least three months, lasting two months or more with no other explanation. Participants must experience at least one symptom cluster: fatigue, breathing difficulties, circulation problems, memory, thinking, or communication issues, or muscle and joint pain. Interested individuals should contact the FHCSD study team via email at longcovid@fhcsd.org or phone/text at 619-324-8677. IRB number IRB-25-0209, approval date October 7, 2025.
November 21, 2025 at 8:50 PM
mecfssd.bsky.social
www.nature.com/articles/s41... maps 8 Long COVID subgroups over 15 months in 3,659 US adults (RECOVER cohort):
* 5% persistently high symptoms
* 12% relapsing/remitting
* 14% worsen after 3 months
Among those with Long COVID at 3 months: 46% stayed ill, 35% fluctuated, 19% improved.
Long COVID trajectories in the prospectively followed RECOVER-Adult US cohort - Nature Communications
Long COVID has heterogeneous presentation and clinical trajectories are not well defined. Here, the authors define trajectories using data from a prospective cohort study in the United States involvin...
www.nature.com
November 21, 2025 at 8:17 PM
mecfssd.bsky.social
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
mecfssd.bsky.social
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
mecfssd.bsky.social
COVID vaccination may cut the risk of long COVID in teens by over a third.
* 36% lower risk in vaccinated 12–17 year-olds
* Severe symptoms also reduced
Even if infection occurs, recent vaccination offers protection.
www.cidrap.umn.edu/covid-19/cov...
COVID vaccination cuts risk of long-term symptoms in teens by over a third, data suggest
www.cidrap.umn.edu
November 6, 2025 at 1:27 AM
mecfssd.bsky.social
ME/CFS is awful—but our community is kind of amazing. Our researchers, clinicians & advocates work together like no other, wearing many hats & fighting fiercely to improve patients’ lives. 💙
www.facebook.com/whitneydafoe...
Whitney Dafoe
One Thing ☝️ Did you know that all the best ME/CFS researchers in the world - for example, every single researcher at Ron’s recent Working Group Meeting - every researcher there said they don’t care....
www.facebook.com
November 6, 2025 at 1:04 AM
mecfssd.bsky.social
@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
mecfssd.bsky.social
Join @batemanhornecenter.bsky.social’s Coffee with a Clinician Nov 12 for Part 2 of “Navigating Clinical Uncertainty.”
Register: batemanhornecenter.zoom.us/meeting/regi...

Part 1 Recording: www.youtube.com/watch?v=3D8E...
Welcome! You are invited to join a meeting: Coffee with a Clinician: Part 2 Navigating Clinical Uncertainty. After registering, you will receive a confirmation email about joining the meeting.
Welcome! You are invited to join a meeting: Coffee with a Clinician: Part 2 Navigating Clinical Uncertainty. After registering, you will receive a confirmation email about joining the meeting.
batemanhornecenter.zoom.us
November 6, 2025 at 12:48 AM
mecfssd.bsky.social
Scripps Research is enrolling participants in a remote long COVID trial testing tirzepatide. Must be 18 or older, live in the US, and have medical documentation of long COVID. Info and webinar registration: longcovid.scripps.edu/locitt-t/
LoCITT-T - Long COVID Treatment Trial
The Long COVID Treatment Trial-Tirzepatide (LoCITT-T) is investigating the efficacy of repurposing this drug to treat Long COVID.
longcovid.scripps.edu
November 3, 2025 at 10:47 PM