Pete Caruso @petecaruso.bsky.social · 18/08/2025Rituximab and Ianalumab develop B cell depletion differently: Rituximab is a first line choice for CD20-driven diseases like non-Hodgkin lymphoma or RA, while Ianalumab shows promise in broader B-cell depletion and BAFF-R inhibition, such as SLE or Sjögren’s disease. 030
Pete Caruso @petecaruso.bsky.social · 18/08/2025A 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.comNovartis announces both ianalumab Phase III clinical trials met primary endpoint in patients with Sjögren’s disease 150
Reposted by Pete CarusoJon Douglas @atranscendedman.bsky.social · 28/05/2025At 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...biorxiv.orgMobius: Mixture-Of-Experts Transformer Model in Epigenetics of ME/CFS and Long COVIDMyalgic 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... 073
Reposted by Pete CarusoPhillyPhile215 @phillyphile215.bsky.social · 23/05/2025@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! 🙏 074
Reposted by Pete CarusoBilly Hanlon @bhanlon15.bsky.social · 23/05/2025The 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...thesicktimes.orgColorado art exhibition showcases creative expressions of Long COVID, advocates for research and treatment - The Sick TimesA 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... 0196
Reposted by Pete CarusoPhillyPhile215 @phillyphile215.bsky.social · 23/05/2025Please help us @latenightseth.bsky.social 🙏 074
Reposted by Pete CarusoBilly Hanlon @bhanlon15.bsky.social · 23/05/2025NL 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...nltimes.nlMuscles of long Covid patients respond differently to inactivity than healthy peopleThe 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... 04415
Reposted by Pete CarusoPhillyPhile215 @phillyphile215.bsky.social · 23/05/2025Help us out @saquonbarkley.bsky.social! 🙏 #GoBirds 063
Reposted by Pete CarusoBilly Hanlon @bhanlon15.bsky.social · 16/05/2025Health Rising: “Finding the Key? Could Unraveling T-cell Exhaustion Solve ME/CFS and Long COVID” www.healthrising.org/blog/2025/05...healthrising.orgFinding the Key? Could Unraveling T-cell Exhaustion Solve ME/CFS and Long COVID - Health RisingResearchers assessing T-cell exhaustion in ME/CFS and long COVID could ultimately identify what caused these diseases. 22813
Reposted by Pete CarusoBilly Hanlon @bhanlon15.bsky.social · 13/05/2025The Sick Times: ““Millions Missing” protest at the Capitol demands myalgic encephalomyelitis funding, social support thesicktimes.org/2025/05/12/m...thesicktimes.org“Millions Missing” protest at the Capitol demands myalgic encephalomyelitis funding, social support - The Sick TimesMyalgic 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... 12510
Reposted by Pete CarusoKatharina 🦋🍋🍀 @katha1970.bsky.social · 12/05/2025Reminder: 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/eventsevents.mecfs-research.orgME/CFS Research FoundationME/CFS Research Foundation is a non-profit organization dedicated to advancing research and understanding of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. 02310
Reposted by Pete CarusoPutrino Lab @putrinolab.bsky.social · 07/05/2025Great 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...mountsinai.orgLong COVID May Cause Long-Term Changes in the Heart and Lungs and May Lead to Cardiac and Pulmonary Diseases 711964
Reposted by Pete CarusoTom Kindlon @tomkindlon.bsky.social · 04/05/2025Thousands 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 24917
Reposted by Pete CarusoSus Scrofa @susscrofa.bsky.social · 02/05/2025Rory 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 0187
Reposted by Pete CarusoDr. Carla, neuropsychiater, post-COVID researcher @carlarus.bsky.social · 05/04/2025One 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...doi.orgFrontiers | Disruptions in serotonin- and kynurenine pathway metabolism in post-COVID: biomarkers and treatmentThis opinion article attempts to connect knowledge about post-Covid syndrome (PCS) gained in neuropsychiatry and immunology. It discusses some misunderstandi... 083
Reposted by Pete CarusoTom Kindlon @tomkindlon.bsky.social · 24/04/2025Toward 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 0104
Reposted by Pete CarusoRiemerville @riemerville.bsky.social · 07/04/2025To 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. 084
Reposted by Pete CarusoRiemerville @riemerville.bsky.social · 05/04/2025“We put men on the moon decades ago, but women are still dying from severe nausea and vomiting during pregnancy,” 0102
Reposted by Pete CarusoPhillyPhile215 @phillyphile215.bsky.social · 01/04/2025@lastweektonight.com @thedailyshow.com @weeklyshowpodcast.bsky.social 👀 What would Jo(h)n do? 0123
Reposted by Pete CarusoThe Sick Times @thesicktimes.org · 01/04/2025In 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 26727
Reposted by Pete CarusoBilly Hanlon @bhanlon15.bsky.social · 29/03/2025Yahoo 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...ca.news.yahoo.comThe pandemic didn't end for this P.E.I. woman, who wants more support for those with long COVIDJust 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... 0111
Reposted by Pete CarusoMiles W. Griffis @mileswgriffis.bsky.social · 28/03/2025🚨 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...thesicktimes.orgUPDATE: RECOVER Long COVID pathobiology grants restored - The Sick TimesLong 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... 562045606
Pete Caruso @petecaruso.bsky.social · 28/03/2025NIH RECOVER cuts have started. There’s still time to contact Congress and ask them to stop the Long COVID Recover cuts. See easy toolkit by Long COVID Campaign to send a message. #NotLongCOVIDcuts bsky.app/profile/lcca...bit.lyNew/Mode | Make your voice impossible to ignore 031
Pete Caruso @petecaruso.bsky.social · 28/03/2025“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. 151
Pete Caruso @petecaruso.bsky.social · 23/03/2025Nipocalimab (mAb) Phase 3 Clinical Trial is now recruiting for Sjogren's Disease in USA, UK, Japan, and Taiwan For cities/locations, see the clinical trials link. www.clinicaltrials.gov/study/NCT067...clinicaltrials.govClinicalTrials.gov 020
Pete Caruso @petecaruso.bsky.social · 23/03/2025Sjogren'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...jnj.comNipocalimab, 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... 173
Reposted by Pete CarusoRiemerville @riemerville.bsky.social · 16/03/2025What 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 13211
Reposted by Pete CarusoRiemerville @riemerville.bsky.social · 15/03/2025Post-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. #LongCovidAwarenessDaymedia.tenor.coma 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 !! 1267
Reposted by Pete CarusoThe Sick Times @thesicktimes.org · 04/03/2025Join 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 314256
Reposted by Pete CarusoBilly Hanlon @bhanlon15.bsky.social · 10/03/2025New York Times: “30 Charts That Show How Everything Changed…in March 2020” “The number of people reporting a disability soared. Many Americans struggled with long Covid and reported cognitive issues like “brain fog” www.nytimes.com/interactive/... 1122384
Pete Caruso @petecaruso.bsky.social · 09/02/2025Calling on chronic illness friends to join the #JohnVsJonVsME #ValentinesDay edition! Which Jo(h)n will be the first to win our hearts & cover the #GreatestMEdicalScandal? Keep a lookout for a @johnvsjonvsme.bsky.social toolkit shared soon w/ ways to join the LoveFest depending on 🥄 level. 131
Reposted by Pete CarusoBilly Hanlon @bhanlon15.bsky.social · 08/02/2025ScienceAlert: COVID-19 May Be Linked With Higher Alzheimer's Risk, Study Finds Aside from the potential curse of long COVID, people who've had SARS-CoV-2 may be more likely to develop high levels of biomarkers for brain proteins linked to Alzheimer's.. www.sciencealert.com/covid-19-may...sciencealert.comCOVID-19 May Be Linked With Higher Alzheimer's Risk, Study FindsAside from the potential curse of long COVID, people who've had the SARS-CoV-2 virus may be more likely to develop high levels of biomarkers for brain proteins linked to Alzheimer's disease, scientist... 26819
Reposted by Pete CarusoBilly Hanlon @bhanlon15.bsky.social · 05/02/2025Economic Times: “Long COVID costs countries billions of dollars” Long COVID is costing countries billions of dollars in lost productivity and increased health and social welfare costs, economists say. m.economictimes.com/news/interna...m.economictimes.comLong COVID costs countries billions of dollarsLong COVID is causing significant economic damage, with estimates suggesting that millions globally face persistent health issues impacting productivity and increasing healthcare costs. Countries like... 47334
Reposted by Pete Carusosibylle dahrendorf @sibylledahrendorf.bsky.social · 29/01/2025#SaveTheDate 25. Februar 2025 - 22.40 Uhr, ARTE TV, Dokumentation, 90 Minuten #ChronischKrank #ChronischIgnoriert #ME #MEcfs #LongCovid #LongLyme #CCI #POTS #SmallFiber #MCAS #CCI #FQToxicity #PostVac #LongList www.prisma.de/tv-programm/...prisma.deChronisch krank, chronisch ignoriert - arte - TV-ProgrammObwohl die Myalgische Enzephalomyelitis, das Chronisches Fatigue-Syndrom (ME/CFS), seit Jahrzehnten als neurologische Erkrankung anerkannt ist, wird sie dennoch von weiten Teilen der Ärzteschaft nach ... 38937
Pete Caruso @petecaruso.bsky.social · 03/02/2025A good mask protects you from catching airborne viruses. #wearamask 120
Reposted by Pete CarusoRor Preston @rorpreston.bsky.social · 01/02/2025This visual shows UK gov funding levels for different diseases over time - analysis by @mediumwhite.bsky.social 💸 It shows how paltry funding for ME has been, especially considering that data from the US suggests the ME disease burden is larger than for the other 3 *combined* 😅 #MECFS #LongCovid 34323
Reposted by Pete CarusoDr. Bel @drbelkr.bsky.social · 29/01/202590s ME/CFS cognitive behavioural hypothesis: patients falsely believe they're sick = activity avoidance = deconditioning = symptoms CBT & graded exercise therapy: fix false belief & return to activity = reconditioning = recovery BUT they don't work ME/CFS patients ARE sick #MECFS #organicillnessfrontiersin.orgFrontiers | CBT and graded exercise therapy studies have proven that ME/CFS and long COVID are physical diseases, yet no one is aware of thatThe cognitive behavioral model (CBmodel) (1,2) has dominated the world of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) since the 1990s. Accord... 0307
Reposted by Pete CarusoThelonevirologist @thelonevirologist.bsky.social · 28/01/2025SARS-CoV-2 S-protein expression drives syncytia formation in endothelial cells www.nature.com/articles/s41...nature.comSARS-CoV-2 S-protein expression drives syncytia formation in endothelial cells - Scientific ReportsScientific Reports - SARS-CoV-2 S-protein expression drives syncytia formation in endothelial cells 063
Pete Caruso @petecaruso.bsky.social · 29/01/2025The @wecrunchme report "The Future is a Policy Choice" shows that #LongCOVID and #MECFS are significantly underfunded, compared to other major diseases. This information needs to be shared to inform policy makers. 182
Pete Caruso @petecaruso.bsky.social · 29/01/2025The @wecrunchme report shows that #LongCovid has the same disease burden of Type I and Type II diabetes, yet it's considerably underfunded. Download and share "The Future is a Policy Choice" in the drive.google.com/file/d/17fgU... 32412
Pete Caruso @petecaruso.bsky.social · 27/01/2025“Intensity of the CD45-PET signal correlates robustly with the severity of disease in models of inflammatory lung and bowel diseases” 020
Reposted by Pete CarusoMaría Richardson @diatoma.bsky.social · 25/01/2025Anybody in the #ME tech/app field looking for an ME and #LongCovid informed (though not #pwME themselves ) full stack web developer to join the team? @rorpreston.bsky.social 0105
Pete Caruso @petecaruso.bsky.social · 20/01/2025SF Bay area recruiting controls that have recovered from at least one Covid infection. Help researchers understand controls Vs. Long COVID. 081
Reposted by Pete CarusoRebecca Pompano @pompanolab.bsky.social · 15/01/2025My whole team is excited to share our preprint with you, on an #OrganOnChip model of T cell-B cell interactions in the human lymph node! This is a model of antibody production starting from naive T cells and B cells, in a 3D microenvironment. #immunoengineering www.biorxiv.org/content/10.1... 26011