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ME/CFS San Diego @mecfssd.bsky.social · 20h

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

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ME/CFS San Diego @mecfssd.bsky.social · 21h

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

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ME/CFS San Diego @mecfssd.bsky.social · 2d

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

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ME/CFS San Diego @mecfssd.bsky.social · 2d

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.

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ME/CFS San Diego @mecfssd.bsky.social · 4d

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

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ME/CFS San Diego @mecfssd.bsky.social · 6d

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

ME/CFS San Diego @mecfssd.bsky.social · 20d

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)

ME/CFS San Diego @mecfssd.bsky.social · 22d

Dr. Alain Moreau study, with Montreal, Uppsala & @openmedf.bsky.social computational biology team, finds haptoglobin (Hp) drops after exertion in ME/CFS, linked to worse PEM & cognitive issues. Genetic Hp variants influence symptom severity. translational-medicine.biomedcentral.com/articles/10....

Haptoglobin phenotypes and structural variants associate with post-exertional malaise and cognitive dysfunction in myalgic encephalomyelitis - Journal of Translational Medicine

Background Myalgic encephalomyelitis (ME) is a chronic, multisystem illness characterized by post-exertional malaise (PEM) and cognitive dysfunction, yet the molecular mechanisms driving these hallmar...

translational-medicine.biomedcentral.com

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ME/CFS San Diego @mecfssd.bsky.social · 22d

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!

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ME/CFS San Diego @mecfssd.bsky.social · 22d

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

ME/CFS San Diego @mecfssd.bsky.social · 22d

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)

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ME/CFS San Diego @mecfssd.bsky.social · 27d

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.

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ME/CFS San Diego @mecfssd.bsky.social · 27d

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...

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ME/CFS San Diego @mecfssd.bsky.social · 28d

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...

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ME/CFS San Diego @mecfssd.bsky.social · 28d

ME Research UK & ME Association have funded the next phase of a study at Brunel University exploring electrical differences in blood cells to develop a reliable, low-cost ME/CFS diagnostic test. Learn more: bit.ly/4pu2qXM

New funding to advance the development of a diagnostic test for ME/CFS

ME Research UK and the ME Association are excited to build on our October 2023 partnership, when we jointly funded a 12-month study exploring electrical differences in blood cells from people with ME/...

bit.ly

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ME/CFS San Diego @mecfssd.bsky.social · 28d

ProPublica’s deep dive into the SSA highlights decades of legacy systems, recent management upheaval, & ongoing modernization struggles, issues that affect disabled people who depend on timely and reliable benefits. www.propublica.org/article/inside-doge-social-security-takeover-leland-dudek

The Untold Saga of What Happened When DOGE Stormed Social Security

DOGE has ignored urgently needed reforms and upgrades at the Social Security Administration, according to dozens of insiders and 15 hours of candid interviews with the former acting chief of the agenc...

www.propublica.org

ME/CFS San Diego @mecfssd.bsky.social · 28d

New study: fragments of Borrelia burgdorferi (Lyme bacteria) can linger in the liver for weeks, triggering immune and metabolic issues.

May explain persistent symptoms after treatment (PTLDS).

Similar mechanisms may apply to ME/CFS and Long COVID.

www.the-scientist.com/fragments-of...

Fragments of Lyme Disease Bacteria Linked to Liver Dysfunction

Cell wall components from Borrelia burgdorferi lingered in the mouse liver for weeks, suggesting new therapeutic avenues for this chronic disease.

www.the-scientist.com

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ME/CFS San Diego @mecfssd.bsky.social · Sep 2

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 ssa.gov
. Please share widely!

ssa.gov

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ME/CFS San Diego @mecfssd.bsky.social · Aug 28

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.bsky.social: bit.ly/3UNqUNy

Scientists Find Links to Chronic Fatigue Syndrome in Genes and in the Gut Microbiome

Two studies present new data on ME/CFS, offering "credibility and validity" to the experiences of patients struggling with symptoms

bit.ly

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ME/CFS San Diego @mecfssd.bsky.social · Aug 27

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

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ME/CFS San Diego @mecfssd.bsky.social · Aug 27

Big wins for ME/CFS in the Senate’s 2025 appropriations bills (via @solveme.bsky.social):
* $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. Speak up: solvecfs.quorum.us/campaign/136...

Urge Congress to Keep ME/CFS Language in Final FY26 Appropriations

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 mea...

solvecfs.quorum.us

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ME/CFS San Diego @mecfssd.bsky.social · Aug 15

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/webinar/regi...

Welcome! You are invited to join a webinar: Community Symposium on the Molecular Basis of ME/CFS. After registering, you will receive a confirmation email about joining the webinar.

The Stanford Genome Technology Center will be hosting a virtual Community Symposium on Friday, September 5th from 8:00am-1:00pm (PST)! You will have the opportunity to hear from speakers who will pres...

stanford.zoom.us

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ME/CFS San Diego @mecfssd.bsky.social · Aug 15

Curious how scientists are reprogramming the immune system?
Free 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/lectures/tra...

Reprogramming the immune system: A new era of precision immunotherapy for cancer and autoimmune disease - Travis Young, PhD - Scripps Research

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 tis...

frontrow.scripps.edu

ME/CFS San Diego @mecfssd.bsky.social · Aug 15

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/research/coh...

Resources at Cohen Center for Recovery from Complex Chronic Illness | Icahn School of Medicine

Learn about resources at the Cohen Center for Recovery from Complex Chronic Illness. Stay updated on research and treatment options for chronic illnesses.

icahn.mssm.edu

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ME/CFS San Diego @mecfssd.bsky.social · Aug 14

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

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