ME/CFS San Diego

The word "Banned" in red with a red border

Our Reddit ME/CFS communities have been taken offline again by Reddit automated enforcement (no rules, broken no feedback).
This is the 5th disruption in the past year.
Repeated instability makes it very difficult to build safe, continuous support spaces.

💙ME/CFS San Diego

Illustration of three pillars labeled “Best Research Evidence,” “Clinical Expertise,” and “Patient & Lived Experience” supporting the concept of Evidence-Based Medicine, with the subtitle “Integrating Science, Skill, Patient Needs for Optimal Care.” This emphasizes that optimal medical care requires balancing scientific research, clinical skill, and patients’ lived experiences.

After reading about evidence-based versus eminence-based medicine on @tomkindlon.bsky.social , I found this article by Dr. Ruth D. Williams. It explains why combining research, clinical expertise, and patient experience is essential. It resonates for ME/CFS.
www.aao.org/eyenet/artic...

An infographic titled 'The TSH Blind Spot' featuring two clipboards and an ME/CFS San Diego awareness ribbon. The left clipboard lists what TSH measures: brain signals, the brain-thyroid loop, and blood levels. The right clipboard lists what it misses: Hashimoto antibodies, T4 to Reverse T3 conversion, cellular uptake, and low iron. The bottom caption reads: 'A normal TSH only tells part of the story.'

TSH only shows the brain’s signal to the thyroid. For ME/CFS, a full panel, Free T4, Free T3, Reverse T3, thyroid antibodies, ferritin, is better to see production, conversion, autoimmunity, and cellular function.

House Appropriations Committee releases three-bill minibus with funding for key health programs | AHA News The House Appropriations Committee Jan. 20 released text of a three-bill minibus for fiscal year 2026 that includes funding for key health programs and other bipartisan health care provisions and exte...

House FY26 minibus funds NIH $48.7B & CDC $9.1B (flat funding). Telehealth extended 2 yrs, incl. audio-only visits. Hospital-at-home 5 yrs. ME/CFS supporters who are able can ask Senate for report language to direct NIH to prioritize ME/CFS before the 1/30 deadline. www.aha.org/news/headlin...

TAKE ACTION FOR ME/CFS | #MEAction #MEAction is dedicated to taking action in places that affect people with ME, Long COVID, and other chronic illnesses. Join us!

Medicare at-home telehealth access for ME/CFS is set to change on 1/30 unless legislators act. Let them know this issue affects constituents. Take action: www.meaction.net/take-action

Identification of Novel Reproducible Combinatorial Genetic Risk Factors for Myalgic Encephalomyelitis in the DecodeME Patient Cohort and Commonalities with Long COVID Background Myalgic encephalomyelitis (also known as ME/CFS or simply ME) has severely impacted the lives of tens of millions of people globally, but the disease currently has no accurate diagnostic to...

Recent DecodeME study reveals the genetic roots of ME/CFS & its link to Long COVID. Thousands of small DNA variations influence risk, involving 2,311 genes. 76 genes overlap with Long COVID. Preprint: www.medrxiv.org/content/10.6...

BATEMAN HORNE CENTER RESEARCH OPPORTUNITIES OUR STUDIES Our research department is conducting studies to better understand chronic health conditions. Complete survey to express interest and be contacted about current or future studies. QUESTIONS? CONTACT OUR RESEARCH TEAM 801-532-8311 research@batemanhornecenter.org

Help advance research on chronic health conditions! The @batemanhornecenter.bsky.social is inviting you to complete a short interest survey to hear about potential research opportunities.

Take the survey: bit.ly/49y4bfs

Questions? research@batemanhornecenter.org or 801-532-8311

A photo of NIH NINDS Director 2015-2025 Walter Koroshetz

NIH NINDS Director Walter Koroshetz is stepping down after his reappointment was denied. As Chair of the Trans-NIH Working Group and NIH Co-lead for the ME/CFS Research Roadmap, he was a vital partner. His exit creates a leadership vacuum that threatens to stall progress.

An announcement flyer for the "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 flyer features a blue ribbon, a hand drawing a lightbulb idea, and details about cash prizes of up to $500. It states the contest is open to all current UCSD students with a submission deadline of December 31, 2025.

Submissions NEEDED: UCSD students (all levels), now’s a great chance to share your vision for a future that better supports people with ME/CFS in the 2nd Annual ME/CFS San Diego Essay Contest. Submit by Dec 31 → www.mecfssandiego.com/MECFSSD-UCSD...

Mapping the complexity of ME/CFS: Evidence for abnormal energy metabolism, altered immune profile, and vascular dysfunction Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex disorder with undefined mechanisms, no diagnostic tools and treatments. To in…

ME/CFS cells struggle to make ATP, immune cells can’t “dock” to fully mature, and blood vessels fail to open when needed, feeding a vicious cycle. A new study identifies specific markers and targets for diagnosis and treatment. www.sciencedirect.com/science/arti...

Long COVID involves activation of proinflammatory and immune exhaustion pathways - Nature Immunology Long COVID (LC) involves a spectrum of chronic symptoms after resolution of acute severe acute respiratory syndrome coronavirus 2 infection. Barouch and colleagues show that LC is characterized by per...

New Long COVID research highlights persistent inflammation, immune exhaustion, and metabolic disruptions, key factors shared by both conditions. Targeting immune pathways like JAK-STAT may lead to potential treatments for ME/CFS. www.nature.com/articles/s41...

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

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...

YouTube video by SolveME What's New in ME/CFS? Interview with Dr. Peter Rowe

@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

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...

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...

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.

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.

YouTube video by SolveME What's New in ME/CFS? Interview with Dr. Chris Ponting

@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...

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.

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 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.

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

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.

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...

Bateman Horne Center Support Group Events (Bateman Horne Graphics)

@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 "Coffee with a Clinician" free virtual event series

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...

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.

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

MCAS Heads up! Unfortunately changed ingredients lists are not always well-advertised (includes an old and new ingredient list for Smart Balance Original Spread)

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.

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.

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...

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…

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...

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.

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...

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.

Join the LC-REVITALIZE Long COVID Study!

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

clinicaltrials.gov/study/NCT069...

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/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.

Federal Funding Bill UPDATE Some ME/CFS Impacts

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

SNAP Program Cover Image

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...