ME/CFS San Diego SSDI Application for ME/CFS/LC: a brief guide for patients. Covers the application stages, why many claims reach hearings, documenting functional limitations, PEM and fluctuating capacity, CPET considerations, and resources. www.mecfssandiego.com/mecfs-resour...

NotJustFatigue Advocacy: looking for people with ME/CFS, or contacts, in ME, WV, WI, WA, ND, KS, CT, MA to support congressional meetings & media outreach. Contact: connect@notjustfatigue.org notjustfatigue.org

#NotJustFatigue - Home

Myalgic Encephalomyelitis, a disease commonly known as “Chronic Fatigue Syndrome” or “ME/CFS”, is a severely debilitating physiological illness. Of those suffering, 75% are unable to attend school or ...

notjustfatigue.org

Unbound 6-minutes: micro-movements filmed over 9 months during rare energy windows by 22 ME/CFS/LC participants (inc. director & producer). Dance representative of paced disability in some. Created for awareness and medical education with required screening toolkit. www.youtube.com/watch?v=mxK6...

Unbound: Illness is not the end of dance

YouTube video by Unfixed Community

youtube.com

@batemanhornecenter.bsky.social July Recaps: 7/7 batemanhornecenter.org/wp-content/u... 7/21 batemanhornecenter.org/wp-content/u... 7/8 "Coffee" w/ Clinician: Recording www.youtube.com/watch?v=5LmN... Slides batemanhornecenter.org/wp-content/u... Q&A Follow-Up batemanhornecenter.org/wp-content/u...

@quadraminstitute.bsky.social COMPASS-ME Study Recruitment: 40 women (England w/access to postal services), aged 18-45 w/ confirmed ME/CFS diagnosis for a fully remote study of microbes & possible infectious triggers. Incl. saliva, nasal, oral & vaginal swabs plus surveys. quadram.ac.uk/compass-me/

The COMPASS-ME Study - Quadram Institute

Are you a woman aged between 18 and 45? You may be eligible to take part in the COMPASS-ME Study. The COMPASS-ME Study is investigating potential microbes and infectious triggers associated with Myalg...

quadram.ac.uk

OMB Research Grant Review Rules: A U.S. Senate funding resolution would delay proposed OMB changes that would let political appointees influence federal research grant decisions, keeping the current peer review system in place through at least Dec. 11. www.yahoo.com/news/politic...

Senate funding resolution seeks to put OMB rule changes to research grants on hold

The U.S. Senate is emerging as a potential bulwark against proposed rule changes that would give government bureaucrats more control over scientific funding. A draft agreement to fund the government ...

yahoo.com

Medicaid Medical Exemptions: Nebraska has begun implementing Medicaid work requirements under new CMS rules that say serious or terminal diagnoses alone may not qualify people for exemptions. www.axios.com/2026/08/03/m...

Medicaid's work requirement crunch arrives

States are implementing new rules, and patients face the first real risk of losing coverage.

axios.com

Special Edition: Coffee w/ a Clinician: @batemanhornecenter.bsky.social @meactnet.bsky.social @openmedf.bsky.social @solveme.bsky.social and @pillowwriters.bsky.social discuss severe ME/CFS, lived experience, clinician education, research, & advocacy. 8/12, 10 am MDT givebutter.com/Coffeewithcl...

August 12th "Coffee" with a Clinician

Special Edition: "Coffee" with a Clinician in Recognition of Severe ME/CFS Awareness Month

givebutter.com

August @batemanhornecenter.bsky.social Support Groups: Aug. 4, 1:00 pm MDT: Caretaking While Chronically Ill. batemanhornecenter.zoom.us/meeting/regi... Aug. 18, 1:00 pm MDT: Dealing with the Harsh Inner Critic. batemanhornecenter.zoom.us/meeting/regi...

@actionforme.bsky.social Education Guide: New resource helps schools support pupils with ME/CFS by explaining PEM, fluctuating symptoms, pacing, and practical adjustments including flexible timetables, remote learning, rest breaks, and individual support plans. www.actionforme.org.uk/wp-content/u...

EV miRNA biomarkers in ME/CFS: Tiny study found extracellular vesicle miRNA signatures that distinguished ME/CFS from idiopathic chronic fatigue and depression. Findings are preliminary: only 6 ME/CFS participants, no independent validation yet. link.springer.com/article/10.1...

Circulating extracellular vesicles-microRNAs as potential biomarkers for the identification of ME/CFS: differentiating fatigue-related conditions - Journal of Translational Medicine

Background Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating, multi-systemic condition that has gained renewed global attention due to its clinical overlap with the growing...

link.springer.com

@batemanhornecenter.bsky.social List of Patient Resources: t-sml.mtrbio.com/public/smart... includes so many amazing options from downloadable pdfs (great to share) to youtube videos!

t-sml.mtrbio.com

@polybiorf.bsky.social funded Persistent virus-specific T cells LC Study: found persistent SARS-CoV-2-, EBV-, & CMV-specific cytolytic CD8+ T cells in Long COVID, supporting ongoing antiviral immune activation. Cohort: symptomatic LC ≥3 months. pubmed.ncbi.nlm.nih.gov/42526441/

Persistent cytolytic CD8+ T cells recognize SARS-CoV-2 and herpesvirus epitopes in long COVID - PubMed

Viral-specific CD8⁺ T cells play roles in protective immunity and immunopathology including during COVID-19. Leveraging combinatorial tetramers, we profiled CD8⁺ T cells specific...

pubmed.ncbi.nlm.nih.gov

PIONEER ME/CFS Trial (Charité Germany): randomized inebilizumab (CD19 B-cell depletion) in selected subset of ME/CFS patients w/ elevated β2-adrenergic receptor antibodies who previously showed a temporary response to immunoadsorption. clinicaltrials.gov/study/NCT077... @scheibenbogen.bsky.social

@sciam.bsky.social article: FcRn-blocking therapies reduce IgG antibodies by preventing their recycling. www.scientificamerican.com/custom-media... @scheibenbogen.bsky.social Team ME/CFS study w/ mention: www.tandfonline.com/doi/full/10....)

A long hunt pays off for targeted autoimmune disease treatments

Precision therapies reduce harmful antibodies by disrupting a key cellular recycling pathway

scientificamerican.com

Spanish hospital study: 3–5% long COVID reflects administrative tracking rather than true prevalence. Cases were limited to official occupational health logs, and one hospital relied on extended sick leave records without available clinical validation. link.springer.com/article/10.1...

Sex and occupational differences in long COVID prevalence among healthcare workers: a multicentre registry-based study in three Spanish hospitals - BMC Public Health

Aims To estimate the prevalence of long COVID identified through hospital registry data and examine associated occupational and demographic factors among healthcare workers (HCWs) in Spain. Methods A ...

link.springer.com

CDC Study on Invasive Mold Infections: examined serious infections by certain mold species in medically high-risk patients, prompted by concerns about mold-related illness after disasters & found them to be underrecognized, . apnews.com/article/mold...

Study suggests the threat of mold-associated illnesses may be underappreciated

A new U.S. study suggests invasive mold infections may be an underappreciated threat. Researchers found about 450 cases in Atlanta-area hospitals over five years, with a third of patients dying in the...

apnews.com

@batemanhornecenter.bsky.social Survey CLOSING SOON: 125+ patients shared what resources they need most, including appointment tools, provider guidance, daily living support, MCAS/immune system information, research updates, & treatment discussions. batemanhornecenter.jotform.com/261734834427...

July Campaign Survey

Please click the link to complete this form.

batemanhornecenter.jotform.com

Federal Research Grant Rule Contact Your Reps!: @solveme.bsky.social urges you to ask Reps www.congress.gov/members/find... to oppose a proposed OMB rule allowing political appointees to override scientific peer review, cancel active grants, & more. ow.ly/3bHM50ZtzUs

@meactnet.bsky.social ER Survey: MEAction will be CLOSING 10 am PT 7/30. If you have diagnosed ME/CFS/LC & have been to emergency room in the past 10 years for your symptoms, take the Emergency Department survey: ow.ly/QlUt50ZtCoN

Social Security Advisory Board Calls for Easier SSI Reporting: Report urges SSA to simplify SSI reporting with better online tools, a recipient record view, & more automation to reduce payment errors & make reporting easier for people with disabilities. www.ssab.gov/research/sup...

Supplemental Security Income and Reporting Requirements | SSAB

ssab.gov

Deakin University (Geelong, AU) in-person (5 Visits) Long COVID FMT Trial: Researchers are testing whether fecal microbiome transplantation (FMT) could improve LC symptoms. 18–65 w/ moderate to severe LC symptoms Contact: CTUClinicalTrialsUnit@barwonhealth.org.au | (03) 4215 3078

@solveme.bsky.social Funded: Early-access manuscript from Rob Wüst’s team finds that, in the ME/CFS/LC participants studied, inactivity alone did not explain reduced exercise capacity & skeletal muscle abnormalities compared w/ healthy people after 60 days of bed rest. www.nature.com/articles/s41...

In Their Words Series @batemanhornecenter.bsky.social : Share your Severe ME/CFS story for Awareness Day through a short written reflection, audio, or video. Submissions are due Wed., Aug. 5. bit.ly/4ftJXq5

Clone of This is ME:

Please click the link to complete this form.

bit.ly

Medicare Drug Premium Subsidies Ending: Millions of Medicare beneficiaries could pay higher drug plan premiums in 2027 after the administration announced it will end a temporary subsidy program. (Gift Article) www.nytimes.com/2026/07/28/b...

Trump Will End Subsidies for Medicare Drug Premiums (Gift Article)

Millions of older Americans could pay more for their prescription drug coverage next year.

nytimes.com

NCNED Australian ME/CFS Registry Study: Analysis of 2,873 people w/ ME/CFS & 797 healthy controls from Australia's largest ME/CFS registry found substantially reduced quality of life & identified symptom clusters that may help define clinical subtypes. link.springer.com/article/10.1...

Australian registry reports poor health and wellbeing in people living with ME/CFS - Journal of Translational Medicine

Introduction Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a debilitating condition hallmarked by post-exertional malaise accompanied by an array of multisystemic symptoms. Consequent...

link.springer.com

Incorrect link on NCNED ME/CFS/LC MRI study: Advanced MRI found distinct brain tissue microstructure changes in ME/CFS and long COVID compared w/ healthy controls which suggest altered white matter may contribute to symptoms inc. fatigue & brain fog. Correct link: www.frontiersin.org/journals/med...

Frontiers | Microstructural alterations in brain tissue of ME/CFS and long COVID using diffusion tensor imaging and diffusion kurtosis imaging

IntroductionMyalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and long COVID have overlapping symptoms, such as profound fatigue, cognitive impairm...

frontiersin.org

2024 Tufts CSDD study: finding enough participants is still one of the biggest barriers to successful clinical trials. Slow patient enrollment delays research, increases costs, and slows access to potential new treatments. link.springer.com/article/10.1...

Benchmarking Site Activation and Patient Enrollment - Therapeutic Innovation & Regulatory Science

Clinical trial conduct poses numerous challenges, many pertaining to patient recruitment. The primary objectives of this study were to update benchmarks on site activation and patient enrollment gathe...

link.springer.com

@sierraclub.org article on Wildfire Smoke including ME/CFS/LC Patient-Advocate lived experience: looks at why the tiny particles in wildfire smoke can worsen symptoms in people w/ underlying condition www.sierraclub.org/sierra/how-p...

How Particulate Matter From Wildfire Smoke Impacts Our Health

People with health issues say it worsened their symptoms or forced them to stay inside

sierraclub.org

ADDitude ADHD Comorbidities Survey: studying the connections between ADHD and conditions including ME/CFS, MCAS, hypermobility, autonomic dysfunction, pain/fatigue syndromes, & autoimmune issues. us.list-manage.com/OWZbipsBXIQ?...

ADHD & Inflammation

Take this survey powered by surveymonkey.com. Create your own surveys for free.

us.list-manage.com