ME/CFS San Diego
@mecfssd.bsky.social
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.
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...
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...
November 9, 2025 at 10:53 PM
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...
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...
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.
. 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).](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:2j3foc3c2paae6txvbec2pff/bafkreibqg6qrbsnov5qkyoxnyuvc45pbnuagcgrw4jgxuw4cl2gpfywgwy@jpeg)
November 9, 2025 at 10:01 PM
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.
. 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.
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...
* 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
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...
* 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...
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...
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
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...
www.facebook.com/whitneydafoe...
@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...
Nov 11: Denial, Resistance & Gaslighting: batemanhornecenter.zoom.us/meeting/regi...
Nov 18: Acquainted with Grief: batemanhornecenter.zoom.us/meeting/regi...
November 6, 2025 at 12:53 AM
@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...
Nov 11: Denial, Resistance & Gaslighting: batemanhornecenter.zoom.us/meeting/regi...
Nov 18: Acquainted with Grief: batemanhornecenter.zoom.us/meeting/regi...
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...
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
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...
Register: batemanhornecenter.zoom.us/meeting/regi...
Part 1 Recording: www.youtube.com/watch?v=3D8E...
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
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/
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
Details & entry: bit.ly/mecfsSDessay
October 22, 2025 at 9:08 PM
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
Details & entry: bit.ly/mecfsSDessay
The 2025 Stanford Community Symposium on the Molecular Basis of ME/CFS is now available on YouTube.
Researchers from Stanford, Harvard, DecodeME & more share new findings on metabolism, imaging, treatment, and immunity.
📺 Watch here: www.youtube.com/playlist?lis...
Researchers from Stanford, Harvard, DecodeME & more share new findings on metabolism, imaging, treatment, and immunity.
📺 Watch here: www.youtube.com/playlist?lis...
Community Symposium on the Molecular Basis of ME/CFS 2025 - YouTube
Community Symposium on the Molecular Basis of ME/CFS September 5, 2025, hosted by Stanford University and Ron Davis
www.youtube.com
October 17, 2025 at 9:38 PM
The 2025 Stanford Community Symposium on the Molecular Basis of ME/CFS is now available on YouTube.
Researchers from Stanford, Harvard, DecodeME & more share new findings on metabolism, imaging, treatment, and immunity.
📺 Watch here: www.youtube.com/playlist?lis...
Researchers from Stanford, Harvard, DecodeME & more share new findings on metabolism, imaging, treatment, and immunity.
📺 Watch here: www.youtube.com/playlist?lis...
New from Nature: Scientists are learning to fix faulty mitochondrial DNA, offering hope for rare genetic diseases.
While not specific to #MECFS, it's a big step for understanding energy metabolism, something long suspected to play a role in ME/CFS.
🔗 www.nature.com/articles/d41...
While not specific to #MECFS, it's a big step for understanding energy metabolism, something long suspected to play a role in ME/CFS.
🔗 www.nature.com/articles/d41...
Faulty mitochondria cause deadly diseases: fixing them is about to get a lot easier
CRISPR-based tools can’t easily access the DNA in these organelles, but researchers are finding other ways in.
www.nature.com
October 16, 2025 at 12:32 AM
New from Nature: Scientists are learning to fix faulty mitochondrial DNA, offering hope for rare genetic diseases.
While not specific to #MECFS, it's a big step for understanding energy metabolism, something long suspected to play a role in ME/CFS.
🔗 www.nature.com/articles/d41...
While not specific to #MECFS, it's a big step for understanding energy metabolism, something long suspected to play a role in ME/CFS.
🔗 www.nature.com/articles/d41...
Two big RTHM updates that could help ME/CFS & long COVID care:
Their AI platform is now live and free: www.rthm.com
Selected for Mayo Clinic’s Platform_Accelerate, a program helping startups validate and scale AI health tools
Launch event: us06web.zoom.us/webinar/regi...
Their AI platform is now live and free: www.rthm.com
Selected for Mayo Clinic’s Platform_Accelerate, a program helping startups validate and scale AI health tools
Launch event: us06web.zoom.us/webinar/regi...
RTHM - Expert Virtual Care for Long COVID, ME/CFS, POTS, and MCAS
Get accessible, evidence-based virtual care for Long COVID, ME/CFS, POTS, and MCAS. Expert clinicians, personalized treatment plans, and free health tracking tools.
www.rthm.com
October 15, 2025 at 7:31 PM
Two big RTHM updates that could help ME/CFS & long COVID care:
Their AI platform is now live and free: www.rthm.com
Selected for Mayo Clinic’s Platform_Accelerate, a program helping startups validate and scale AI health tools
Launch event: us06web.zoom.us/webinar/regi...
Their AI platform is now live and free: www.rthm.com
Selected for Mayo Clinic’s Platform_Accelerate, a program helping startups validate and scale AI health tools
Launch event: us06web.zoom.us/webinar/regi...
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
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
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
Open to adults 18+ globally both those with PEM AND healthy controls.
Takes ~10–15 mins. www.dsqpem2.com
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...
www.uea.ac.uk/about/news/a...
October 8, 2025 at 7:04 PM
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...
www.uea.ac.uk/about/news/a...
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...
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...
October 7, 2025 at 2:59 AM
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...
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...
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
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
October 7, 2025 at 2:45 AM
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
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
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
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
October 5, 2025 at 3:49 PM
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
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
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...
If you’re able, please support: www.mecfssandiego.com/support-mecf...
October 2, 2025 at 6:15 PM
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...
If you’re able, please support: www.mecfssandiego.com/support-mecf...
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...
Find your reps: www.congress.gov/members/find...
September 18, 2025 at 8:42 PM
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...
Find your reps: www.congress.gov/members/find...
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
September 17, 2025 at 7:09 AM
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....
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...
Survey: redcap.is.depaul.edu/surveys/?s=P...
September 16, 2025 at 9:15 PM
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...
Survey: redcap.is.depaul.edu/surveys/?s=P...
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...
4PM PT | 7PM ET
frontrow.scripps.edu/lectures/ben...
September 16, 2025 at 8:50 PM
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...
4PM PT | 7PM ET
frontrow.scripps.edu/lectures/ben...
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_...
September 16, 2025 at 8:39 PM
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_...
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
Register: www.notjustfatiguelivestream.org
September 12, 2025 at 3:05 AM
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
Register: www.notjustfatiguelivestream.org
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...
www.reddit.com/r/mecfsSD/co...
September 12, 2025 at 1:21 AM
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...
www.reddit.com/r/mecfsSD/co...
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...
September 10, 2025 at 7:46 PM
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...