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ME/CFS San Diego

@mecfssd.bsky.social
1.6K followers 52 following 920 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.

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ME/CFS San Diego @mecfssd.bsky.social · 26/09/2026
Research-informed Multiple Chemical Sensitivity (MCS) Resource: covering symptoms, proposed mechanisms, diagnosis, treatment, disability rights & support. mcsdisability.com
mcsdisability.com
Multiple Chemical Sensitivity (MCS) | Is It Real? YES — Medical Facts & Resources
Comprehensive, evidence-based information about Multiple Chemical Sensitivity (MCS). Symptoms, triggers, research, disability rights, and management strategies.
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ME/CFS San Diego @mecfssd.bsky.social · 26/09/2026
ISLC-PAIS 2026 Research Highlights: First of three planned @meresearchuk.bsky.social articles discusses findings from funded ME/CFS projects. www.meresearch.org.uk/islc-pais-20...
meresearch.org.uk
ISLC-PAIS 2026: Highlights from ME Research UK–funded projects
NB: When considering information concerning groups of people with ME/CFS and those with long COVID, it is important to remember that ME/CFS is a symptom-based clinical diagnosis not a mechanistic one....
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ME/CFS San Diego @mecfssd.bsky.social · 26/09/2026
AI In Medicine: AI could help clinicians access ME/CFS guidelines, but must be critically evaluated. www.nytimes.com/2026/09/25/o... (Gift Article)
nytimes.com
Opinion | Being a Doctor Will Never Be the Same After A.I. (Gift Article)
I’m confident in my mastery over what doctors do — and less confident about my continued mastery of an ever-evolving universe of facts.
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ME/CFS San Diego @mecfssd.bsky.social · 26/09/2026
AI & Medical Costs: Hospitals use AI to find billable conditions; insurers use AI to look at claims. Patients are caught in the middle. www.nytimes.com/2026/09/24/b... (Gift Article)
nytimes.com
Battle of Hospital A.I. vs. Insurer A.I. Is Pushing Medical Costs Higher (Gift Article)
The use of artificial intelligence by hospitals and health insurers is escalating their longstanding feud over paying for medical care.
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ME/CFS San Diego @mecfssd.bsky.social · 26/09/2026
@solveme.bsky.social 2026 Community Webinar: the state of ME/CFS and Long COVID research & advocacy, research funding & infrastructure, & Solve M.E.’s plans for the year ahead. 10/20, 1pm PT. Will be recorded. Live Captioned. us02web.zoom.us/webinar/regi...
us02web.zoom.us
Welcome! You are invited to join a webinar: The Solve M.E. 2026 Community Address: Shaping What Comes Next. After registering, you will receive a confirmation email about joining the webinar.
Join us for a webinar highlighting the state of research and advocacy in our field right now, and what comes next. President and CEO Emily Taylor, Chief Scientific Officer, Sadie Whittaker, PhD., Di...
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ME/CFS San Diego @mecfssd.bsky.social · 26/09/2026
NIH ME/CFS Exchange Webinar: Anthony Komaroff moderates & speaks on why post-acute infection symptoms persist. Oct. 8, 2026, 10am PT. rtiorg.zoom.us/webinar/regi...
us02web.zoom.us
Welcome! You are invited to join a webinar: The Solve M.E. 2026 Community Address: Shaping What Comes Next. After registering, you will receive a confirmation email about joining the webinar.
Join us for a webinar highlighting the state of research and advocacy in our field right now, and what comes next. President and CEO Emily Taylor, Chief Scientific Officer, Sadie Whittaker, PhD., Di...
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ME/CFS San Diego @mecfssd.bsky.social · 26/09/2026
@meassociation.org.uk Patient-Co-Produced Clinical Assessment Toolkit ME-CAT now available: free questionnaire downloads & research underpinning. May be more accessible for mild to moderate ME/CFS. meassociation.org.uk/2026/09/rese...
meassociation.org.uk
Research Update: MEA Clinical Assessment Toolkit (MEA‑CAT) – Stage II - The ME Association
Explore the MEA-CAT, a co-produced ME/CFS assessment toolkit with the ME Association. Learn more about stage II of the project.
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ME/CFS San Diego @mecfssd.bsky.social · 26/09/2026
ME/CFS Stanford 2026 Symposium Recording: Update on the molecular basis research www.youtube.com/playlist?lis...
youtube.com
2026 Community Symposium on the Molecular Basis of ME/CFS - YouTube
Community Symposium on the Molecular Basis of ME/CFS September 11, 2026, hosted by Stanford University and Ron Davis Opening Remarks: Ronald W. Davis, PhD, S...
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ME/CFS San Diego @mecfssd.bsky.social · 26/09/2026
Adolescent Mild-Moderate ME/CFS Small Study: slower processing speed, poorer sleep and quality of life, plus attention & working-memory difficulties. www.meresearch.org.uk/me-cfs-in-ad...
meresearch.org.uk
ME/CFS in Adolescence: Effects on cognition and wellbeing
Research has shown that ME/CFS commonly begins during adolescence (10–19 years) and adulthood (30–39 years), with the first peak coinciding with a crucial period of physical, emotional, cognitive and ...
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ME/CFS San Diego @mecfssd.bsky.social · 25/09/2026
Immunoids: Human stem-cell-derived organoids incorporating functional immune cells could improve modelling of immune-tissue interactions, disease and therapeutic responses. The field is still developing. www.sciencedirect.com/science/arti...
sciencedirect.com
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ME/CFS San Diego @mecfssd.bsky.social · 25/09/2026
PEM Infographic for family & caregivers: by Natasha Lee (AI assisted), covers delayed symptom worsening, unpredictable costs, crashes, loss of baseline, & why pacing matters. www.facebook.com/photo/?fbid=...
facebook.com
Facebook
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ME/CFS San Diego @mecfssd.bsky.social · 25/09/2026
I Would Be Here If I Could, UK Art Installation: Alison Larkman's travelling Mirrorbox carries messages from people with ME/CFS & LC to places they can no longer reach, inviting visitors to listen and write back. www.iwouldbehereificould.com
iwouldbehereificould.com
I Would Be Here If I Could... – Giving voice and presence to people with M.E. and Long Covid
The largest collaborative art project in the UK co-curated with people with M.E. and Long Covid, giving voice and presence to those who are now absent from the everyday.
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ME/CFS San Diego @mecfssd.bsky.social · 25/09/2026
U.S. ACA Coverage Cancellations: HHS canceled health insurance for 760,000 Healthcare.gov enrollees; CMS said enrollments were unauthorized. www.npr.org/2026/09/22/n...
healthcare.gov
Welcome to the Health Insurance Marketplace®
Welcome to the Health Insurance Marketplace®. Official government website.
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ME/CFS San Diego @mecfssd.bsky.social · 25/09/2026
Disability Rights Update: Court Removes HHS Rules Protecting Community-Based Care, Amid DOJ’s Reversal on Olmstead. dredf.org/texas-v-kenn...
dredf.org
National Disability Organizations Condemn the Federal Government’s Abandonment of Its Commitment to Community Integration for People with Disabilities, as Approved by the Court in Texas v. Kennedy - D...
Disability Rights Education & Defense Fund
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ME/CFS San Diego @mecfssd.bsky.social · 25/09/2026
Canadian Pharmacy Mail Orders: Oct. 22, new CBP rules may make routine U.S. shipments unworkable, pharmacy groups say. www.post-gazette.com/business/hea...
post-gazette.com
Millions of Americans get discount prescriptions from Canada. That back-door arrangement is about to close.
A back-door discount pharmacy arrangement that millions of Americans use to fill prescriptions in Canada and other international drugstores will close...
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ME/CFS San Diego @mecfssd.bsky.social · 25/09/2026
Healthcare Standards: @emergeaustralia.bsky.social calls for standards that address stigma, recognize PEM, and ensure people with ME/CFS/LC feel believed and safe. zurl.co/aisYP
zurl.co
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ME/CFS San Diego @mecfssd.bsky.social · 25/09/2026
@investinmeresearch.bsky.social MyGivingCircle Vote (Free): 428 votes needed to reach the Top 20 and share in $70,000. Voting closes Wednesday Sept 30 at 8pm BST. mygivingcircle.org/invest-in-me...
mygivingcircle.org
Vote for Invest in ME Research to share in £1,500,000
Each year MyGivingCircle gives £1,500,000 in grants and donations
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ME/CFS San Diego @mecfssd.bsky.social · 25/09/2026
Ireland Disability Support Grant: Budget 2027 will introduce a permanent disability support payment, replacing recent one-off payments. Amount and eligibility are still to be confirmed. www.irishtimes.com/your-money/2...
irishtimes.com
Budget 2027: Permanent disability support grant to be introduced
Payment seen in Department of Social Protection as ‘first step’ in acknowledging additional costs people with disabilities face
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ME/CFS San Diego @mecfssd.bsky.social · 24/09/2026
@openmedf.bsky.social PEM Survey & Webinar: Nearly 1,700 people shared post-exertional worsening experiences. OMF webinar will present results. us02web.zoom.us/webinar/regi...
us02web.zoom.us
Welcome! You are invited to join a webinar: CTN Lite: PEM Deep Dive Survey Results. After registering, you will receive a confirmation email about joining the webinar.
Welcome! You are invited to join a webinar: CTN Lite: PEM Deep Dive Survey Results. After registering, you will receive a confirmation email about joining the webinar.
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ME/CFS San Diego @mecfssd.bsky.social · 24/09/2026
Trigger Warning, Arnaud Denis: Person with severe ME/CFS died by euthanasia in Belgium on Sept. 22. ME Global Chronicle shares his account of healthcare and final message to fellow patients. meglobalchronicle.wordpress.com/2026/09/23/i...
meglobalchronicle.wordpress.com
I’m done with medical abuse
Arnaud Denis, a 43-year-old French director and actor, passed away in Belgium on September 22, 2026. A few years ago, following surgery, he developed a very severe case of ME/CFS. He chose to under…
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ME/CFS San Diego @mecfssd.bsky.social · 24/09/2026
@simmaronresearch.bsky.social NIH R01 Grant: New 5-year NIH funding will study mTOR dysfunction in ME/CFS, building on Simmaron’s rapamycin research; a placebo-controlled rapamycin trial and biomarker test are also planned www.simmaronresearch.com
simmaronresearch.com
Simmaron Research
Simmaron Research plays a key role in developing scientific research to improve diagnosis, treatment and medical understanding of ME/CFS and other neuroimmune diseases.
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ME/CFS San Diego @mecfssd.bsky.social · 24/09/2026
@emergeaustralia.bsky.social : $220K/year in government funding is at risk, could affect services for 600,000\+ Australians with ME/CFS/LC. emerge.org.au/news/bringin...
emerge.org.au
Bringing ME/CFS and long COVID sectors together around Recommendation 8  – Emerge Australia
Sick and Tired: Casting a long shadow long COVID Inquiry 2023
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ME/CFS San Diego @mecfssd.bsky.social · 24/09/2026
Dark Genome & Clonal Hematopoiesis: DNMT3A and TET2 mutations were linked to distinct inflammatory mechanisms, suggesting potential new biomarkers and treatment targets. medicalxpress.com/news/2026-09...
medicalxpress.com
'Dark genome' reveals different routes to inflammation in age-related condition
The study, published in GeroScience, investigated mutations in DNMT3A and TET2, the two most common mutations in clonal hematopoiesis, an age-related condition in which mutated blood stem cells expand...
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ME/CFS San Diego @mecfssd.bsky.social · 24/09/2026
Autonomic Movement Disorders & Misdiagnosis: Seizure-like movements may be misdiagnosed with PNES/FND when OI isn't considered; PNES/FND can be comorbid too. www.frontiersin.org/journals/neu...
frontiersin.org
Frontiers | Improved outcomes for patients with autonomic movement disorders originally evaluated for psychogenic non-epileptiform spells
BackgroundPatients experiencing autonomic storms related to dysautonomia may present with abnormal movements, including convulsions, tremors, and myoclonus. ...
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ME/CFS San Diego @mecfssd.bsky.social · 24/09/2026
TLR Immune Signaling, Boston Children’s Study: TLRs can keep triggering inflammation after their signaling complex detaches; blocking it reduced inflammation in cells and mice. medicalxpress.com/news/2026-09...
medicalxpress.com
Newly discovered inflammatory cell signaling could open the door to autoimmune disease treatments
Our understanding of how cells interact with each other has been driven for decades by the central concept of receptor-mediated signal transduction. Now, researchers from Boston Children's Hospital ar...
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ME/CFS San Diego @mecfssd.bsky.social · 24/09/2026
Medicaid Work Requirements Interview: Journalist seeking rural residents willing to discuss how they are affected. wildmimosatrees@proton.me for details.
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ME/CFS San Diego @mecfssd.bsky.social · 24/09/2026
ME/CFS Care Crisis: @georgemonbiot.bsky.social examines patients’ reports of abandonment, inappropriate treatment and outdated approaches despite updated guidance. www.theguardian.com/commentisfre...
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
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ME/CFS San Diego @mecfssd.bsky.social · 23/09/2026
Germany Patient Organization @nichtgenesen.bsky.social Letter To Springer Nature: Letter criticizes Chapter 91, "Chronisches Fatigue-Syndrom," in the 2026 Verhaltenstherapiemanual – Erwachsene for stigmatizing and scientifically problematic content. drive.google.com/file/d/1_9Tt...
drive.google.com
NichtGenesen_Kapitel91_Beanstandung.pdf
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ME/CFS San Diego @mecfssd.bsky.social · 23/09/2026
PRIME International ME/CFS Research Symposium (Free Hybrid), Edinburgh: Sept. 28–29, with online attendance. Includes launch of the International Genetic Epidemiology of ME/CFS Consortium and presentations from early-career researchers and PPI Hub. www.tickettailor.com/events/unive...
tickettailor.com
Register here – PRIME International Symposium Edinburgh, Scotland - A Hybrid Event – John McIntyre Conference Centre
PRIME International Symposium Edinburgh, Scotland - A Hybrid Event – John McIntyre Conference Centre, Mon 28 Sep 2026 - Tue 29 Sep 2026 - A 2-day hybrid meeting designed to bring together cross-disci...
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ME/CFS San Diego @mecfssd.bsky.social · 23/09/2026
ME Support NZ ME/CFS Genetics Event (will be recorded): Sept/24, 7–8PM NZT. Prof. Chris Ponting discusses @decodemestudy.bsky.social genetics, biomarker research & updates on Sequence ME/Long COVID, incl. prospects for diagnostic blood test. meet.google.com/mdq-sjcc-kyf
meet.google.com
Meet
Real-time meetings by Google. Using your browser, share your video, desktop, and presentations with teammates and customers.
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ME/CFS San Diego @mecfssd.bsky.social · 23/09/2026
Sleep Dysfunction In ME/CFS: @meresearchuk.bsky.social research & patient experiences www.meresearch.org.uk/sleep-dysfun...; short survey on sleep with ME/CFS. www.meresearch.org.uk/sleep-dysfun...
meresearch.org.uk
Sleep dysfunction in ME/CFS
Sleep is essential for restoring and repairing the whole body, including the brain, and for processing memories. The vast majority of people with ME/CFS report having sleep difficulties, and research suggests that poor sleep quality is often associated with reduced quality of life. As sleep disturbances can exacerbate already challenging symptoms of ME/CFS – such…
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ME/CFS San Diego @mecfssd.bsky.social · 23/09/2026
Trump Drug Pricing Deals With Pfizer & Eli Lilly: Newly released contracts reveal tariff protections, broad confidentiality provisions & Lilly carve-out for GLP-1; heavy redactions leave key terms unknown. www.citizen.org/article/foia...
citizen.org
FOIA Documents: Trump-Pharma MFN Drug Pricing Deals - Public Citizen
The Trump administration has signed dozens of “most favored nation” (MFN) agreements with pharmaceutical companies, claiming to provide Americans with…
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ME/CFS San Diego @mecfssd.bsky.social · 23/09/2026
ProPublica App Rx Inspector: Find where your generic drug was made by entering information from your prescription label projects.propublica.org/rx-inspector/
projects.propublica.org
Where Was My Generic Prescription Drug Made? - Rx Inspector - ProPublica
The FDA won’t tell Americans where their generic drugs are made, so ProPublica did it instead. Use information on your prescription label to locate the factory and see inspection reports.
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ME/CFS San Diego @mecfssd.bsky.social · 23/09/2026
@solveme.bsky.social Advocacy Update: Congress Delayed OMB Grant Rule Implementation Until 12/11. Urge Congress to withdraw the rule and protect merit-based NIH grantmaking. Editable email template provided. solvecfs.quorum.us
solvecfs.quorum.us
Advocacy Action Center
Share to social media
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ME/CFS San Diego @mecfssd.bsky.social · 23/09/2026
U.S. Adults 18+ With Diagnosed ME/CFS or PTLD: @polybiorf.bsky.social / Mount Sinai open-label lumbrokinase trial, with treatment sent to participants' homes & symptom questionnaires. polybio.org/projects/lum...
polybio.org
Lumbrokinase LongCOVID & ME/CFS clinical trial - PolyBio Research Foundation
Project Summary:A clinical trial to test if the fibrinolytic enzyme Lumbrokinase improves symptoms and mitigates blood clotting issues or platelet hyperactivation in...
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ME/CFS San Diego @mecfssd.bsky.social · 21/09/2026
George Monbiot ME/CFS Column: Following a massive patient response, Monbiot says he has stopped accepting emails and hopes to do the issue justice, describing the accounts as a grim picture of ongoing neglect and abuse.
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ME/CFS San Diego @mecfssd.bsky.social · 21/09/2026
Congratulations to @anilvanderzee.bsky.social : awarded Knight in the Order of Orange-Nassau for his years of advocacy for people with ME and other PAIS. virology.ws/2026/09/02/t...
virology.ws
Trial By Error: Patient Advocate Anil van der Zee Receives Dutch Royal Distinction | Virology Blog
By David Tuller, DrPHLast month, I was delighted to hear that my friend Anil van der Zee, who has been bed bound with ME/CFS for years, had been selected to ...
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ME/CFS San Diego @mecfssd.bsky.social · 21/09/2026
KFF Analysis of 2025 Prior Authorization Data: Insurers denied 12% of standard requests in Medicare Advantage, 14% in Medicaid managed care and 18% in ACA Marketplace plans. www.kff.org/patient-cons...
kff.org
Prior Authorization Metrics Provide New Insights into Insurer Practices, but Gaps Remain | KFF
This analysis of available 2025 prior authorization data finds insurers denied at least 1 in 8 standard requests for prior authorization across three insurance markets: Medicare Advantage, Medicaid ma...
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ME/CFS San Diego @mecfssd.bsky.social · 21/09/2026
Medicaid Work Requirements: Georgetown researchers examine data used to support work reporting requirements, finding major problems with estimates of how many adults would be affected. ccf.georgetown.edu/2026/09/09/r...
ccf.georgetown.edu
Right Wing “Data” Arguing for Medicaid Work Reporting Requirements is Fatally Flawed
We don’t usually write a blog like this that dissects the flawed methodology of the Foundation for Government Accountability (FGA) – a right-wing group that is well known for promoting work reporting ...
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ME/CFS San Diego @mecfssd.bsky.social · 21/09/2026
Chronically Ill Life Explainer: Account includes invisible symptoms, limited energy, medical dismissal and the full-time work of managing health. www.publicsource.org/pots-long-co...
publicsource.org
I look fine, but dealing with chronic illness is my full-time job
Jennifer McCalla doesn't look sick, but living with long COVID and POTS is a full-time job. She writes about invisible illness and the fight to be believed.
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ME/CFS San Diego @mecfssd.bsky.social · 21/09/2026
ME/CFS and Affective Injustice: New paper examines how disbelief can harm patients through pressure to suppress emotions, appear sufficiently ill, conform to the good patient role & manage others’ reactions. link.springer.com/article/10.1...
link.springer.com
ME/CFS and the emotional toll of persistent disbelief: from epistemic to affective injustice - Medicine, Health Care and Philosophy
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a debilitating chronic illness whose sufferers are frequently met with disbelief, stigmatization, and psychologization in both clinical a...
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ME/CFS San Diego @mecfssd.bsky.social · 21/09/2026
George Monbiot ME/CFS Question for Upcoming Column: Asks patients whether they’re still being offered inappropriate treatments such as psych approaches or GET. Email george@monbiot.info
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ME/CFS San Diego @mecfssd.bsky.social · 21/09/2026
NIH Research Funding: WH drafting executive order that could shift NIH grants from scientific peer review to a committee able to veto awards that don’t conform to the administration’s political agenda. www.nytimes.com/2026/09/20/s... (gift article)
nytimes.com
White House Moves to Take Control of N.I.H. Grants (Gift Article)
Federal officials are drafting an executive order that would place grants under review by an outside panel, the latest effort to redirect billions of dollars in research spending.
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ME/CFS San Diego @mecfssd.bsky.social · 21/09/2026
Best Practice by Oscar-Winning Film-maker: Danish short film about forced removal of a very severe ME patient, confronting stigma, institutional power & human consequences of coercive care. vimeo.com/1129923232
vimeo.com
BEST PRACTICE Trailer
Trailer for "Best Practice" the new short film by ©Oscar-winner Martin Strange-Hansen
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ME/CFS San Diego @mecfssd.bsky.social · 19/09/2026
Seven ME/CFS Genetic Associations: Edinburgh preprint reports 7 associations replicated across UK Biobank/All of Us, including CLYBL. None overlapped with DecodeME, and the effective sample size was small. www.medrxiv.org/content/10.6...
medrxiv.org
Seven replicated genomic associations of myalgic encephalomyelitis/chronic fatigue syndrome: a biobank study
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a debilitating female-biased disease with neither diagnostic biomarkers nor effective treatment nor well-understood aetiology. To investi...
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ME/CFS San Diego @mecfssd.bsky.social · 19/09/2026
6/1/2026 BBC ME/CFS Explainer: A useful overview highlights PEM, cognitive symptoms, unrefreshing sleep and post-viral links, while noting diagnosis remains clinical and treatment is symptom management. www.bbc.com/articles/c3d...
bbc.com
Myalgic Encephalomyelitis (ME) support
Myalgic Encephalomyelitis (ME) support
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ME/CFS San Diego @mecfssd.bsky.social · 19/09/2026
German Severe ME Registry: helps researchers identify and contact people with severe/very severe ME for potential studies, including home-visit research in Germany, Austria & Switzerland. linktr.ee/severe_me_re...
linktr.ee
ME_Registry Official: Instagram, X | Linktree
Linktree. Make your link do more.
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ME/CFS San Diego @mecfssd.bsky.social · 19/09/2026
What Doesn’t Kill You Documentary: People with ME or LC can still submit their stories for consideration in the documentary and wider advocacy work. whatdoesntkillyou.movie/interview
whatdoesntkillyou.movie
Share Your Story | What Doesn't Kill You
We're collecting stories from as many people with ME/CFS and Long COVID as possible for the documentary. Share yours.
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ME/CFS San Diego @mecfssd.bsky.social · 19/09/2026
Ireland (Health Service Executive) HSE ME Page: including details of Lived Experience Groups still recruiting people with ME and those who support them. (shared by @tomkindlon.bsky.social ) healthservice.hse.ie/staff/inform...
healthservice.hse.ie
Myalgic Encephalomyelitis (ME)
Myalgic Encephalomyelitis (ME) is a serious, long-term complex disease that affects multiple body systems and can greatly reduce a person’s health and quality of life.
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ME/CFS San Diego @mecfssd.bsky.social · 19/09/2026
Medicaid Work Requirement Litigation: States challenge federal Medicaid work/community-engagement rules, including documentation requiring patients to prove a condition impairs work or volunteering. Hearing on summary judgment is Oct. 20. litigationtracker.law.georgetown.edu/litigation/c...
litigationtracker.law.georgetown.edu
Commonwealth of Massachusetts et al. v. Oz et al. - Health Care Litigation Tracker
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