ME/CFS San Diego

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.

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ME/CFS San Diego
@mecfssd.bsky.social

Medicaid for SSDI: ACA expansion covered 120,300 people awaiting Medicare in 2023. New work rules could jeopardize coverage. www.kff.org/medicaid/wha...

kff.orgWhat Could Medicaid Work Requirements Mean for People with Disabilities Waiting for Medicare Coverage? | KFFThis analysis finds that Medicaid through the expansion pathway covered over 1 in 4 SSDI applicants and beneficiaries waiting to become eligible for Medicare (120,300 people out of a total 415,300 in ...
ME/CFS San Diego
@mecfssd.bsky.social

Medicaid for SSDI: ACA expansion covered 120,300 people awaiting Medicare in 2023. New work rules could jeopardize coverage. www.kff.org/medicaid/wha...

kff.orgWhat Could Medicaid Work Requirements Mean for People with Disabilities Waiting for Medicare Coverage? | KFFThis analysis finds that Medicaid through the expansion pathway covered over 1 in 4 SSDI applicants and beneficiaries waiting to become eligible for Medicare (120,300 people out of a total 415,300 in ...
ME/CFS San Diego
@mecfssd.bsky.social

Dutch ME/CFS Article with Rob Wüst: Why minor exertion can trigger prolonged symptom worsening, why fixed-increment exercise plans can backfire, and how muscle abnormalities in ME/CFS differ from bed-rest deconditioning. www.menshealth.nl/nieuws/wat-i...

menshealth.nlBij deze ziekte kan zelfs een gesprek je dagenlang zieker makenSprintster Beth Dobbin ligt door ME vrijwel de hele dag in bed. Rob Wüst legt uit wat de ziekte met je doet en waarom harder trainen niet de oplossing is.
ME/CFS San Diego
@mecfssd.bsky.social

Dormant Viruses & Long COVID: NPR explores how stress and immune changes may reactivate dormant viruses, using research on astronauts to investigate possible links to LC. www.npr.org/2026/10/23/n...

npr.orgThe dormant viruses in all of us may help explain long COVID : Short WaveVirtually every human on Earth has a slew of different types of dormant viruses in our bodies. They are remnants of past infections and are—generally—harmless. Unless they wake up, which can be trigge...
ME/CFS San Diego
@mecfssd.bsky.social

Medical Record Stigma: US survey: 1 in 6 reported judgmental language in records or care. Chronic pain linked to 3.25x adjusted odds of reporting disrespectful language. jamanetwork.com/journals/jam...

jamanetwork.comPatient Experiences of Disrespectful or Judgmental Language in Medical RecordsThis survey study evaluates the frequency of participant-reported disrespectful or judgmental language in medical records, characterizes patient-anticipated consequences, and examines factors associat...
ME/CFS San Diego
@mecfssd.bsky.social

DHSC Response to @bethdobbin.bsky.social Letter: offered familiar assurances about research and its ME plan, but Dobbin challenges the claims, highlighting inadequate funding & a £15.3m shortfall for Sequence ME. x.com/BethDobbin/s...

x.comBeth Dobbin (@BethDobbin) on XBBC Sport approached @number10gov for a response to my letter to @andyburnham . The @DHSCgovuk responded and unfortunately this statement isn’t anything we didn’t already know. There are also fundamen...
ME/CFS San Diego
@mecfssd.bsky.social

Cellular Energy & Chronic Disease: @sciam.bsky.social explores how mitochondrial dysfunction may contribute to aging & disease. Much is relevant to ME/CFS, yet not mentioned. Incl. exercise advice problematic for ME/CFS. www.scientificamerican.com/article/the-...

scientificamerican.comA provocative new theory of mitochondria could explain aging and diseaseCould disruptions in the flow of energy through mitochondria cause everything from type 2 diabetes to Alzheimer’s?
ME/CFS San Diego
@mecfssd.bsky.social

LC Mouse Preprint: Blocking TLR7 prevented brain inflammation & memory problems in mice. ME/CFS research has also suggested a possible TLR7 link. www.biorxiv.org/content/10.1...

biorxiv.orgMechanisms of sex differences in acute and long COVID sequelae in miceMales suffer more severe outcomes during acute COVID-19 and a greater proportion of females develop post-acute sequalae of COVID-19 (PASC). To identify mechanisms of PASC, mice were infected with SARS...
ME/CFS San Diego
@mecfssd.bsky.social

NIH Vaccinology & Immunology Center Update: Research to investigate serious post-vaccination health problems & persistent symptoms after infections, incl. LC but ME/CFS eligibility not clear. www.nih.gov/about-nih/ni...

nih.govStatement from NIH Director Jay Bhattacharya and NIAID Acting Director John H. Powers III on the New NIH Vaccinology and Immunology CenterThe center will bring together patients, physician-scientists, and laboratory researchers to investigate health problems following vaccination and infections, and turn discoveries into better care and...
ME/CFS San Diego
@mecfssd.bsky.social

Spooky Season Readings @meactnet.bsky.social List: Join CoRy Oct 30 at 7pm PT on Twitch for a live dramatic reading of H.G. Wells' The Invisible Man. OR hear Steven Molony's spooky readings anytime, like Poe's The Tell-Tale Heart: www.meaction.net/post/hallowe...

meaction.netHalloween Activities to Enjoy from Home!Happy Halloween! Are you into the spooky season? More of a cozy vibe person? Love it all? Then we have some treats for you! We know it can be hard to join in when living with ME or when a lot of your ...
ME/CFS San Diego
@mecfssd.bsky.social

7T fMRI of CSF Flow and Brainstem Dysfunction in ME/CFS/LC: @polybiorf.bsky.social funded research at the Martinos Center investigating CSF flow, brainstem and craniocervical abnormalities, cerebral blood flow and autonomic dysfunction. polybio.org/projects/cas... polybio.org/2026-spring-...

polybio.orgUltrahigh resolution 7-Tesla imaging of structural abnormalities, cerebrospinal fluid flow, and other symptom mechanisms in patients with infection-associated chronic disease - PolyBio Research Founda...Project summary:A carefully conceptualized series of MRI brain scans using ultrahigh resolution 7-Tesla imaging in patients with infection-associated chronic disease (eg:...
ME/CFS San Diego
@mecfssd.bsky.social

Iceland Health Directorate Report on ME/CFS/LC, POTS & Environmental Illness: minister-requested group calls for better care, social support, research & training, & an end to harmful rehabilitation. mefelag.is/report-direc...

mefelag.isNew Report from the Icelandic Directorate of Health - The ME Society of Iceland demands improvements and calls on the government to take actionThe Board of the ME Society of Iceland welcomes and endorses the recommendations presented in the newly published report of the Directorate of Health's working group concerning the provision of health...
ME/CFS San Diego
@mecfssd.bsky.social

@physicsgirl.bsky.social Long COVID/ME/CFS Article: Dianna Cowern describes severe illness and partial gains with experimental treatments. www.kpbs.org/news/arts-cu...

kpbs.org'Nobody knows what to do': How Long COVID left Physics Girl searching for answersSan Diego's Dianna Cowern, also known as Physics Girl, was one of the internet's most popular science communicators.  Long COVID left her bedbound and facing a medical mystery with life-and-death stak...
ME/CFS San Diego
@mecfssd.bsky.social

Wallersee ME/CFS Charity Hike: 1,250 Austrian students raised funds for WE&ME Foundation research into ME/CFS and post-viral illness, while raising awareness salzburg.orf.at/stories/3376...

salzburg.orf.atWallersee-Spendenwanderung für ME/CFS-Patienten80.000 Menschen sind österreichweit an Myalgischer Enzephalomyelitis (ME/CFS) erkrankt, mehr als 4.000 davon in Salzburg. Um für die Erforschung der auch als „Chronisches Fatigue-Syndrom“ bekannten Kr...
ME/CFS San Diego
@mecfssd.bsky.social

No Surprises Act Arbitration Profits: The law protects patients from surprise out-of-network bills, but created a lucrative industry of paid arbitrators & billing middlemen. The fees & inflated provider payouts add to healthcare costs. www.cbsnews.com/news/no-surp...

cbsnews.comNo Surprises Act shielded patients from big medical bills. Now its arbitration system may be raising costs.Healthcare providers and middlemen are exploiting a loophole in a 2020 law designed to shield consumers from surprise medical bills.
ME/CFS San Diego
@mecfssd.bsky.social

CAR-T & Autoimmune Disease Safety: A patient died during a MS CAR-T study previous trials were paused after fatal immune complications. Experts are questioning the risk-benefit balance of CAR-T for nonfatal diseases. www.biospace.com/drug-develop...

biospace.comBMS reveals death from septic pneumonia of multiple sclerosis patient in CAR T trialThe disclosure—which came ahead of a presentation of data from the Phase 1 Breakfree-2 study at the ACTRIMS-ECTRIMS meeting—follows Bristol Myers Squibb’s late summer revelation that it had paused cer...
ME/CFS San Diego
@mecfssd.bsky.social

Take Action NIH Research Censorship: Urge Congress to restore terminated grants & stop political interference in research, including studies of chronic diseases. action.aclu.org/send-message...

action.aclu.orgStop Censorship and Termination of Scientific ResearchThe Trump administration is unlawfully censoring medical research - cutting off funding for studies on Alzheimer's, cancer, HIV, and other serious conditions to censor views it disagrees with. Science...
ME/CFS San Diego
@mecfssd.bsky.social

Humanized Mouse SARS-CoV-2 Persistence Model: In mice, human immune cells increased viral RNA across organs; T cells dampened antiviral responses. Viral RNA persisted 8 weeks. www.frontiersin.org/journals/imm...

frontiersin.orgFrontiers | A novel model demonstrating that human immune cells promote multiorgan SARS-CoV-2 dissemination and human T cells limit anti-viral innate immunityIntroductionDespite extensive studies, many questions remain regarding the pathology and mechanisms behind Coronavirus disease 2019 (COVID-19), and particula...
ME/CFS San Diego
@mecfssd.bsky.social

GLP-1 and GLP-2 in Gut Injury: In mice, both hormones helped limit T-cell-induced intestinal damage, highlighting their potential to reduce inflammation and restore mucosal integrity. www.cell.com/cell-reports...

cell.comGut-derived glucagon-like peptides attenuate T cell-induced intestinal injuryKoehler et al. demonstrate distinct physiological roles for GLP-1R and GLP-2R signaling in protecting the intestine from αCD3-induced enteropathy. Conversely, GLP-1R/GLP-2R agonists, administered sepa...
ME/CFS San Diego
@mecfssd.bsky.social

CMS Medicare/Medicaid Exclusions: Expanded authority to bar healthcare organizations could raise hospitals’ legal and administrative costs, while leaving unclear how providers can challenge decisions. kffhealthnews.org/morning-brea...

kffhealthnews.orgCMS' Authority To Kick Providers Out Of Medicare And Medicaid May Cost Hospitals - KFF Health NewsHospitals could be saddled with higher administrative and legal costs as CMS expands its fraud oversight authority without clearly detailing how providers could challenge any decisions, Modern Healthc...
ME/CFS San Diego
@mecfssd.bsky.social

ME/CFS Research Roadmap: Neurologist Ilene Ruhoy urges Congress to fund it with $50 million, saying promising research is stalled by lack of funding. www.painnewsnetwork.org/stories/2026...

painnewsnetwork.orgCongress Needs to Fund Solutions to America's Most Neglected Disease — Pain News NetworkBy Dr. Ilene Ruhoy  Twelve years ago, I got sick — and no one believed me. Doctor after doctor dismissed my symptoms, writing them off as everything from chronic sinus infections to perimenopaus...
ME/CFS San Diego
@mecfssd.bsky.social

James Strazza’s Book, Lowcountry: His posthumous book brings together poetry, reflections on severe ME/CFS, and his final diary. @galen2.bsky.social has repurposed James’s treatment GoFundMe to fund publication. See the latest update for details: www.gofundme.com/f/treatment-...

gofundme.comDonate to Treatment for James, organized by Galen WardenJames Strazza has very severe ME/CFS and has been 100% bed bound and unable to care for himself since… Galen Warden needs your support for Treatment for James
ME/CFS San Diego
@mecfssd.bsky.social

Australia DSP Q&A Nov 10 2pm AEDT: @emergeaustralia.bsky.social is hosting a live session for people with ME/CFS/LC applying for the Disability Support Pension. Free self-paced module, recorded video and doctor’s letter template also available. emerge.org.au/disability-s...

emerge.org.auDisability Support Pension - Emerge AustraliaThe Disability Support Pension (DSP) is a Centrelink payment providing financial support if you have a physical, intellectual or psychiatric condition that stops you from working. Click here to access
ME/CFS San Diego
@mecfssd.bsky.social

Disability Voting Rights Week Resources: Two weeks until Election Day! @meactnet.bsky.social shares nonpartisan resources to help people with ME/CFS prepare to vote, understand their rights and navigate voting access. docs.google.com/document/d/1...

docs.google.comDisability Voting Rights Week 20206Disability Voting Rights Week 2026 Voter Resources We have compiled a list of voting resources to support our community’s access to vote. Plain language guide: https://autisticadvocacy.org/policy/t...
ME/CFS San Diego
@mecfssd.bsky.social

Svetlana Blitshteyn Responds to Applegate’s MS Misdiagnosis: A neurologist specializing in autonomic disorders, notes that some patients diagnosed with MS instead have small fiber neuropathy, dysautonomia or autoimmunity, conditions also seen in ME/CFS. x.com/dysclinic/st...

x.comS Blitshteyn MD, FAAN, FANA, Dysautonomia Clinic (@dysclinic) on XPeople may not know this, but I started my neurology career at a large practice dedicated to #multiplesclerosis. As a young neurologist at the time, freshly out of my Mayo Clinic neurology training, I...
ME/CFS San Diego
@mecfssd.bsky.social

Misdiagnosis and Undiagnosed Illness: Christina Applegate learned she doesn't have MS, but her disabling symptoms remain unexplained. Her experience highlights the toll of losing a diagnosis without getting answers. variety.com/2026/tv/news...

variety.comChristina Applegate Reveals She Was Misdiagnosed With MS: ‘I’m Back at Square One’ and It’s a ‘Mindf—’Christina Applegate returned to her podcast, "MeSsy," on Tuesday with some shocking news: She was misdiagnosed with MS.
ME/CFS San Diego
@mecfssd.bsky.social

@thephysicsgirl.bsky.social and ME/CFS/LC Podcast: Dianna Cowern's post-COVID illness, diagnostic failures, partial treatment response, and ongoing research. www.kpbs.org/podcasts/the... (Transcript available)

kpbs.orgPhysics Girl spent her life explaining science. Then science couldn't explain her illnessPhysics Girl spent years explaining the mysteries of the universe. Then she became the mystery herself. Dianna Cowern and her husband, Kyle Kitzmiller, share what happened when a devastating illness c...