Pete Caruso
@petecaruso.bsky.social
Interested in research and awareness of invisible chronic illnesses: ME, Long COVID, Post Vaccine injury, POTS, Sjogrens, and Lyme. Pfp: A man wearing a green face mask Banner: Colorful MEmes from patient-led Long COVID and ME awareness
A Sjogrens trial of ianalumab (in Phase III) announced reaching primary endpoints. Ianalumab is a B-cell depletion and BAFF-R inhibition treatment. Ianalumab has the potential to become the first and only targeted treatment for Sjogrens, once its approved. www.novartis.com/news/media-r...
Novartis announces both ianalumab Phase III clinical trials met primary endpoint in patients with Sjögren’s disease
novartis.com
At the University of Washington and University of Victoria, researchers used DNA from 852 people to train a new AI model that distinguishes ME/CFS from Long COVID with 97% accuracy, offering a potential blood test for these misunderstood illnesses. www.biorxiv.org/content/10.1...
Mobius: Mixture-Of-Experts Transformer Model in Epigenetics of ME/CFS and Long COVID
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long COVID are chronic debilitating post-infectious illnesses that collectively affect up to 470 million individuals. Unlike illnesses o...
biorxiv.org
@davidfajgenbaum.bsky.social ME is exactly the type of challenge you are good at unraveling. Please help us fight #GreatestMEdicalScandal and find effective cures/treatments for #pwME! 🙏
@JohnVsJonVsME@johnvsjonvsme.bsky.social · last yr.We’re sending out a #DisabilitySOS to @DavidFajgenbaum.bsky.social! Will you help us raise awareness about #GreatestMEdicalScandal & bring #MillionsMissing back to safety? 🙏🛟 Learn more at johnvsjon.com #JohnVsJonVsME #MyalgicEncephalomyelitis #MEAwarenessMonth
The Sick Times: 'Colorado art exhibition showcases creative expressions of Long COVID, advocates for research and treatment' 'The gallery is both a stark witness to people’s lived truth with Long COVID and a bright space of creativity and community.' thesicktimes.org/2025/05/23/c...
Colorado art exhibition showcases creative expressions of Long COVID, advocates for research and treatment - The Sick Times
A new exhibition at the Artworks Center for Contemporary Art in Loveland, Colorado, showcases 24 pieces of visual art by 15 artists who live with or are impacted by Long COVID. Within a dynamic galler...
thesicktimes.org
Please help us @latenightseth.bsky.social 🙏
@JohnVsJonVsME@johnvsjonvsme.bsky.social · last yr.We’re sending out a #DisabilitySOS to @latenightseth.bsky.social! Will you help us raise awareness about #GreatestMEdicalScandal & bring #MillionsMissing back to safety (and life)? 🙏🛟 Learn more at johnvsjon.com #JohnVsJonVsME #MyalgicEncephalomyelitis #MEAwarenessMonth
NL Times: 'Muscles of long Covid patients respond differently to inactivity than healthy people' 'Researchers also saw issues when it came to energy production. This came as a result of malfunctioning mitochondria, which are the energy factories...' nltimes.nl/2025/05/23/m...
Muscles of long Covid patients respond differently to inactivity than healthy people
The muscles of people who suffer from long Covid or the chronic illness ME/CVS respond differently to a workout after a period of inactivity than the muscles of people with a clean bill of health, a s...
nltimes.nl
Help us out @saquonbarkley.bsky.social! 🙏 #GoBirds
@JohnVsJonVsME@johnvsjonvsme.bsky.social · last yr.We’re sending out a #DisabilitySOS to @saquonbarkley.bsky.social! Will you help us raise awareness about #GreatestMEdicalScandal & bring #MillionsMissing back to safety (and life)? 🙏🛟 Learn more at johnvsjon.com #JohnVsJonVsME #MyalgicEncephalomyelitis #MEAwarenessMonth #GoBirds
Health Rising: “Finding the Key? Could Unraveling T-cell Exhaustion Solve ME/CFS and Long COVID” www.healthrising.org/blog/2025/05...
Finding the Key? Could Unraveling T-cell Exhaustion Solve ME/CFS and Long COVID - Health Rising
Researchers assessing T-cell exhaustion in ME/CFS and long COVID could ultimately identify what caused these diseases.
healthrising.org
The Sick Times: ““Millions Missing” protest at the Capitol demands myalgic encephalomyelitis funding, social support thesicktimes.org/2025/05/12/m...
“Millions Missing” protest at the Capitol demands myalgic encephalomyelitis funding, social support - The Sick Times
Myalgic encephalomyelitis (ME), Long COVID, and other chronic disease advocates demonstrated outside the Capitol Building in Washington, D.C., this afternoon. Organized by the advocacy group #MEAction...
thesicktimes.org
Reminder: On May 12-13, the “International ME/CFS Conference 2025” will take place. Speakers include Carmen Scheibenbogen, David Putrino, Michael Peluso, Michael Stingl, Klaus Wirth and many more. Registration for the livestream is still possible at events.mecfs-research.org/de/events
ME/CFS Research Foundation
ME/CFS Research Foundation is a non-profit organization dedicated to advancing research and understanding of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome.
events.mecfs-research.org
Carmen Scheibenbogen@scheibenbogen.bsky.social · last yr.Tomorrow the 3rd International ME/CFS Research Conference of Charité will take place in Berlin. You can still register for free. Thank you Cort Johnson for the announcement. www.healthrising.org/blog/2025/05...
Great to see this paper out, showing persistent heart and lung inflammation in people with #LongCOVID, but also highlighting once again that SARS-CoV-2 is a virus that profoundly affects vascular health and that every new infection can do damage. www.mountsinai.org/about/newsro...
Long COVID May Cause Long-Term Changes in the Heart and Lungs and May Lead to Cardiac and Pulmonary Diseases
mountsinai.org
Thousands demand withdrawal of review article recommending exercise therapy for chronic fatigue syndrome Links in image: www.cochranelibrary.com/cdsr/doi/10.... retractionwatch.com/2025/01/23/t... Screenshot from the AMMES May email newsletter #MEcfs #CFS
Rory Preston: Our analysis suggests Long COVID, inc. COVID-triggered ME/CFS, now ranks among the most burdensome diseases in the US — ahead of stroke, diabetes & COPD It’s a rough estimate, but the message is clear: this crisis can’t be ignored. We need to scale research, funding & support
One of my recent articles published in Frontiers in Neurology just reached a new impact milestone. Here is the link if you would like to read our study Mijn Laatste artikel over post COVID bereikte een mijlpaal! doi.org/10.3389/fneu...
Frontiers | Disruptions in serotonin- and kynurenine pathway metabolism in post-COVID: biomarkers and treatment
This opinion article attempts to connect knowledge about post-Covid syndrome (PCS) gained in neuropsychiatry and immunology. It discusses some misunderstandi...
doi.org
Toward a Disease Module for ME/CFS: A Network-Based Gene Prioritization www.medrxiv.org/content/10.1... Screenshot is from the latest Science for ME weekly update #MEcfs #CFS
To the vaxx-and-relax crowd: you’re not out of the woods. There are 200+ symptoms of Long Covid. Vaccines help reduce some risks but not neurological or vascular damage. A paper on this was published in January and It was buried.
Riemerville@riemerville.bsky.social · 2y agoPaper published a few months ago: academic.oup.com/braincomms/a...
“We put men on the moon decades ago, but women are still dying from severe nausea and vomiting during pregnancy,”
Dr Kate Womersley@katewomersley.com · 2y ago@drfejzo.bsky.social is studying whether metformin can prevent hyperemesis gravidarum by desensitising women to rising GDF15 levels during pregnancy. Each step towards treatment gives hope to so many women www.aaas.org/news/genetic....
In a crisis-filled world, breaking through the noise requires creativity, strategy — and, occasionally, a really good meme. This is why the #JohnVsJonVsME campaign began. bit.ly/4hTwUxa
Yahoo News Canada: 'The pandemic didn't end for this P.E.I. woman, who wants more support for those with long COVID' "It's like you're a battery that doesn't charge all the way," the Summerside resident said. ca.news.yahoo.com/pandemic-did...
The pandemic didn't end for this P.E.I. woman, who wants more support for those with long COVID
Just over two years ago, Nikkie Gallant never would have imagined that simply sitting up in bed would be an exhausting task for her. That's been the P.E.I. musician's reality since the fall of 2022, w...
ca.news.yahoo.com
🚨 BREAKING: Long COVID research grants rescinded earlier this week have been restored, according to researchers & patient reps. Advocates organized quickly yesterday in response to the news, helping reverse the decision. Exclusive in @thesicktimes.bsky.social thesicktimes.org/2025/03/28/u...
UPDATE: RECOVER Long COVID pathobiology grants restored - The Sick Times
Long COVID research grants from the National Institutes of Health’s RECOVER program will be restored following news stories about their abrupt cancellations and advocacy to restore the funding, accord...
thesicktimes.org
“We already have a division at NIH devoted to study Long COVID and figure out cures...creating a CDC agency for vaccine injuries and also Lyme disease…more and more people are suffering from these diseases” - RFK Jr. Chris Cuomo didn't ask about the Long COVID Recover cuts announced this week.
Sjogren's Disease News: Nipocalimab investigational treatment has been granted FDA breakthrough therapy designation and Fast Track designation. Nipocalimab is a fully human mAb that targets the neonatal crystallizable fragment receptor (FcRn). #Sjogrens www.jnj.com/media-center...
Nipocalimab, the first and only investigational treatment to be granted U.S. FDA Breakthrough Therapy designation for the treatment of adults with moderate-to-severe Sjögren’s disease, has now receive...
Sjögren’s disease (SjD) is a prevalent, debilitating autoantibody disease with no FDA-approved advanced treatments The Company is actively enrolling patients in the Phase 3 DAFFODIL study This marks t...
jnj.com
Riemerville@riemerville.bsky.social · 2y ago📣It’s time for the Long Covid Madness Bracket Bash!🏀💙 No basketball knowledge? No problem! This is all about fun, community, and Long Covid awareness. Anything goes! Everyone’s welcome! #LongCovidMadness Hosted by @samnorpel.bsky.social, @justkim.bsky.social, and me.
What if something as simple as walking across the room became impossible? That’s was reality for years. Once healthy& active,I’m now housebound, struggling with fatigue, brain fog, pain, heart palpitations, and breathlessness. We need research & awareness. #LongCovidAwarenessDay
Post-viral illness is real. Long COVID isn’t just “taking longer to recover”-it can permanently disable people. Ask around- how many people do you know experiencing a “mysterious illness”? We need research, treatments & support. #LongCovidAwarenessDay
a scooby doo cartoon with the caption looks like we got ourselves a mystery !!
ALT: a scooby doo cartoon with the caption looks like we got ourselves a mystery !!
media.tenor.com
Join The Sick Times editors @betsyladyzhets.bsky.social and @heatherhogan.bsky.social for an evening commemorating Long COVID Awareness Day 2025 and the five-year anniversary of the COVID-19 pandemic landing in New York City. RSVP in-person: bit.ly/43nVjHO RSVP virtual: bit.ly/4kqYqVu
Come hang out with us! 😷
The Sick Times@thesicktimes.org · 2y agoJoin The Sick Times editors @betsyladyzhets.bsky.social and @heatherhogan.bsky.social for an evening commemorating Long COVID Awareness Day 2025 and the five-year anniversary of the COVID-19 pandemic landing in New York City. RSVP in-person: bit.ly/43nVjHO RSVP virtual: bit.ly/4kqYqVu
