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ME/CFS San Diego

@mecfssd.bsky.social
1.6K followers 52 following 947 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 · 02/10/2026
OR Universal Healthcare Plan: draft plan, w/ final recommendations due 12/1 & legislative action possible 2027. CA, NY & WA also pursuing universal healthcare. kffhealthnews.org/elections/si...
kffhealthnews.org
Midterms Have Revived Universal Healthcare Debate. These States Are Ahead of Everyone. - KFF Health News
While Democratic congressional candidates are floating the restoration of federal Affordable Care Act subsidies and Medicaid funding, Oregon officials are crafting a more ambitious plan to implement u...
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ME/CFS San Diego @mecfssd.bsky.social · 02/10/2026
@theguardian.com Letters, Response To @georgemonbiot.bsky.social Column: ME/CFS specialist services limited, care & support gaps & delayed action on specialized severe ME service. www.theguardian.com/society/2026...
theguardian.com
Specialist services are vital to help people with ME/CFS | Letter
Letters: Readers respond to George Monbiot’s article about how those with myalgic encephalomyelitis, or chronic fatigue syndrome, have been failed by the health system
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ME/CFS San Diego @mecfssd.bsky.social · 02/10/2026
@scienceillustrated.bsky.social & @decodemestudy.bsky.social : Chris Ponting on 8 ME/CFS genetic signals (mislabeled as genetic cause) scienceillustrated.com/health/peopl...
scienceillustrated.com
People with chronic fatigue have been misunderstood for decades: reputable researcher offers surprising advice to those struggling with the illness
Chronic fatigue syndrome has often been overlooked by doctors and researchers. Geneticist Chris Ponting has revolutionised our understanding of the disease – and he has a remarkable message for those ...
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ME/CFS San Diego @mecfssd.bsky.social · 02/10/2026
CDC NHIS Redesign Public Comment due Oct 20: Proposed 2028 changes would remove questions on fatigue, cognition, hearing aids & mobility supports impacting representation. www.cdc.gov/nchs/nhis/ab...
cdc.gov
2028 NHIS Questionnaire Redesign
NHIS is updating the survey to modernize its data collection process
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ME/CFS San Diego @mecfssd.bsky.social · 02/10/2026
Fidji Simo, @forbes.com & ChronicleBio: AI startup for ME/CFS, POTS & LC aiming to identify subtypes & match patients to potential treatments. www.forbes.com/sites/amyfel... (paywalled)
forbes.com
Former OpenAI Exec Fidji Simo’s $20 Million Plan To Solve Her Chronic Disease And Others
Sufferers of complex, chronic diseases like POTS and long COVID often spend years searching for relief. The longtime tech exec started ChronicleBio to find treatments using AI and lots of biological d...
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ME/CFS San Diego @mecfssd.bsky.social · 02/10/2026
@renegaderesearch.bsky.social ​Mechanical Basis Preprint: Vote daily through 11/30 hypothesis proposing connective-tissue changes, CCI & brainstem dysfunction may contribute to ME/CFS/LC. www.preprints.org/activity/awa...
preprints.org
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ME/CFS San Diego @mecfssd.bsky.social · 02/10/2026
@massmecfs.bsky.social Annual Meeting: 10/18, 1–3 PM ET Zoom, Medicaid medical-frailty exemptions & Hidden Disabilities Sunflower. Recorded. form.jotform.com/262705926879...
form.jotform.com
Annual Meeting 2026: Being Seen, Sunday, October 18, 2026
Please click the link to complete this form.
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ME/CFS San Diego @mecfssd.bsky.social · 02/10/2026
NYT Medical Mystery: CSF leak evades initial imaging. (ME/CFS & Spontaneous CSF leaks correlated w/ connective tissue dysfunction) www.nytimes.com/2026/10/02/w... (Gift Article)
nytimes.com
The Headaches Disrupted Her Life
The woman’s severe pain seemed to ease only when she was lying down. What would cause such a thing?
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ME/CFS San Diego @mecfssd.bsky.social · 02/10/2026
My Submission: ME/CFS Invisibly life-changing Disability
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ME/CFS San Diego @mecfssd.bsky.social · 02/10/2026
KFF Health News Halloween Haiku Contest: Let's tell everyone how scary ME/CFS is. Submit a haiku by Oct. 19. kffhealthnews.org/news/hallowe...
kffhealthnews.org
Healthcare Is Scary. Channel Your Fears Into a Haiku. - KFF Health News
Think you can terrify us in 17 syllables? KFF Health News’ eighth annual Halloween haiku contest is now open. Send us your most haunting healthcare verses.
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ME/CFS San Diego @mecfssd.bsky.social · 02/10/2026
Disabled Workers & Telework: Third Circuit ruling says employers cannot declare in-person work essential; individual review required. news.bloomberglaw.com/legal-exchan...
news.bloomberglaw.com
Employers With Blanket Return-to-Office Policies Risk Litigation
Opinion: A recent Third Circuit decision exposes the flimsy justification behind nearly every blanket return-to-office mandate issued since the Covid-19 pandemic ended, and it should terrify any emplo...
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ME/CFS San Diego @mecfssd.bsky.social · 02/10/2026
@wired.com LC Misinformation Update: A patient-led campaign uses the article to seek accountability & broader reform in chronic illness journalism scotthugo.substack.com/p/from-the-p.... (Recap: www.mecfssandiego.com/mecfs-advoca...)
scotthugo.substack.com
From “The Painful Truth” to a Professional Reckoning
How One Controversy Can Catalyze Reform in Chronic Illness Journalism
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ME/CFS San Diego @mecfssd.bsky.social · 02/10/2026
U.S. Hospital Charity Care: Patients may qualify for financial assistance and don't know. kffhealthnews.org/health-care-...
kffhealthnews.org
Hospitals Have a Little-Known Tool To Prevent Medical Debt. Here’s How It Works. - KFF Health News
Getting financial assistance from hospitals often involves filling out cumbersome forms. Some states now require hospitals to identify and automatically enroll patients eligible for charity care.
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ME/CFS San Diego @mecfssd.bsky.social · 02/10/2026
Medicare Advantage 2027: CMS’s 16% premium drop obscures insurers cutting plans, reducing competition. Average MA premiums are up 1% excluding SNPs; max out-of-pocket costs rise 10%. www.healthcaredive.com/news/medicar...
healthcaredive.com
Here’s how much insurers are cutting Medicare Advantage plans for 2027
Newly released CMS data shows that insurers continue to adapt to pressure in the privatized Medicare program by culling plans. A press release stressing “stability” didn’t soften the blow.
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ME/CFS San Diego @mecfssd.bsky.social · 02/10/2026
NHS ME/CFS Training Petition: Calls for mandatory education covering all severities. FOI found 547 completed the introductory module & 51 the severe ME/CFS module. www.change.org/p/make-the-m...
change.org
Sign the Petition
Make the ME/CFS (Myalgic Encephalomyelitis) learning mandatory for NHS staff
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ME/CFS San Diego @mecfssd.bsky.social · 02/10/2026
@batemanhornecenter.bsky.social Support Groups 1pm MDT: 10/6, Chronic Illness batemanhornecenter.zoom.us/meeting/regi...; 10/20, Relationships While Chronically Ill batemanhornecenter.zoom.us/meeting/regi...
batemanhornecenter.zoom.us
Welcome! You are invited to join a meeting: Support Group: Managing Common Chronic Illness Symptoms. After registering, you will receive a confirmation email about joining the meeting.
Welcome! You are invited to join a meeting: Support Group: Managing Common Chronic Illness Symptoms. After registering, you will receive a confirmation email about joining the meeting.
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ME/CFS San Diego @mecfssd.bsky.social · 02/10/2026
@batemanhornecenter.bsky.social Coffee with a Clinician Zoom: 10/14, 9 am PT. Assessment & management of cognitive impairment. Free Recorded givebutter.com/Coffeewithcl...
givebutter.com
October 14th "Coffee" with a Clinician
Chapter 6: Cognitive Impairment
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ME/CFS San Diego @mecfssd.bsky.social · 02/10/2026
Planning for next chapter, @massmecfs.bsky.social Survey: Community input wanted. Please complete survey by 10/12 www.surveymonkey.com/r/K8R5D3B
surveymonkey.com
MassME Newsletter Survey 2026Your voice matters. Your responses will help us support you better and to plan for the future of MassME.
Take this survey powered by surveymonkey.com. Create your own surveys for free.
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ME/CFS San Diego @mecfssd.bsky.social · 30/09/2026
NIH Disability Health Research Prizes due 1/15/27: $1.3M in two competitions: up to 20 $50K awards for disability inclusion in clinical research, plus up to three $100K investigator prizes. www.nih.gov/challenges
nih.gov
NIH Challenges and Prize Competitions
NIH uses challenges, also known as prize competitions, to spark new ways of thinking, solve tough problems, stimulate innovation, and advance its core mission of turning discovery into health.
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ME/CFS San Diego @mecfssd.bsky.social · 30/09/2026
@georgemonbiot.bsky.social ME/CFS LBC Interview: Natasha Devon's LBC show 9-minute interview covering key points from his recent Guardian article on ME/CFS. youtu.be/H2rRf_f2hJs
youtu.be
LBC | Natasha Devon interview with George Monbiot
YouTube video by Broken Battery
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ME/CFS San Diego @mecfssd.bsky.social · 30/09/2026
HERITAGE Study: UK Residents with lived experience of ME/CFS/LC sought for 5 questionnaires over 12 months to help develop a framework for future care and support. heritage.leeds.ac.uk/join/
heritage.leeds.ac.uk
Join The HERITAGE Study | Heritage: Health Effects fRom Infection sequelae: Tailoring services and Advancing GuidancE
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ME/CFS San Diego @mecfssd.bsky.social · 30/09/2026
Section 504 Disability Rights: Settlement removes language supporting integrated settings. Laws remain; advocates warn of weaker community protections. www.disabilityscoop.com/2026/09/28/t...
disabilityscoop.com
Trump Administration Gets OK To Scale Back Disability Protections
The government will do away with rules requiring that people with disabilities be served in the community under a settlement with a handful of states that advocates say sidesteps decades of precedent.
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ME/CFS San Diego @mecfssd.bsky.social · 30/09/2026
Caregiver Wisdom Support Group: Oct 4, 12–1 p.m. PDT. Free online group for caregivers of people with ME/CFS, LC and related illnesses. To join, email or sign up for the newsletter. Topic: Micro-Acts of Joy. newsletter.caregiverwisdom.net
newsletter.caregiverwisdom.net
Subscribe to our newsletter
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ME/CFS San Diego @mecfssd.bsky.social · 30/09/2026
ME/CFS/LC Medicaid Medical Frailty Update: PA (Tier 1) & NC Medicaid leaders confirmed ME/CFS/LC may qualify for medical frailty. @meactnet.bsky.social is also engaging officials in CA, WI and CO. meaction.net/post/making-...
meaction.net
Making Progress for ME/CFS and Long COVID
State Medicaid leaders are listening. Here’s what we’ve won so far, and what comes next.
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ME/CFS San Diego @mecfssd.bsky.social · 30/09/2026
Ireland Disability Act Review Deadline Oct 9 5pm: Read MEAI's submission or submit your thoughts using MEAI's short or ultra-short templates. meadvocatesireland.blogspot.com/2026/09/me-a...
meadvocatesireland.blogspot.com
ME Advocates Ireland's Submission to the Public Consultation on the Review of the Disability Act 2005
ME advocates Ireland
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ME/CFS San Diego @mecfssd.bsky.social · 30/09/2026
@weandme.bsky.social Charity Gala at Kittsee Castle: Around 210 guests raised €191,659 for ME/CFS research, with every euro going to WE&ME Projects. www.weandmecfs.org/charity-gala...
weandmecfs.org
Charity Gala in Kittsee: A Look Back at an Evening for ME/CFS
A look back at the charity gala at Kittsee Castle: the guests, the auction and €191,659 raised for ME/CFS research by the WE&ME Foundation.
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ME/CFS San Diego @mecfssd.bsky.social · 30/09/2026
Updates: me-global-chronicle.email-provider.eu/web/lgs5yo8z... Quarterly ME Global Chronicle Articles & News emerge.org.au/researchdige... @emergeaustralia.bsky.social Research Digest
me-global-chronicle.email-provider.eu
ME Global Chronicle #58
ME Global Chronicle #58
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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
And I am very sorry for your loss. We have 3 adult kids with ME/CFS and I think of you and your family often.
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ME/CFS San Diego @mecfssd.bsky.social · 24/09/2026
I think Monbiot’s article shows that the updated guidance is not complete or adequate, and that the gaps in care for severe/very severe ME tragically remain. (My reading is terrible so I may be misunderstanding - I have severe/very severe ME/CFS)
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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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