Rituximab 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 SjΓΆgrenβs disease.
18.08.2025 04:19 β π 3 π 0 π¬ 0 π 0
Novartis announces both ianalumab Phase III clinical trials met primary endpoint in patients with SjΓΆgrenβs disease
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...
18.08.2025 04:19 β π 5 π 0 π¬ 1 π 0
@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! π
23.05.2025 22:15 β π 7 π 4 π¬ 0 π 0
Please help us @latenightseth.bsky.social π
23.05.2025 22:18 β π 7 π 4 π¬ 0 π 0
Help us out @saquonbarkley.bsky.social! π #GoBirds
23.05.2025 22:16 β π 6 π 3 π¬ 0 π 0
Reminder: On May 12-13, the βInternational ME/CFS Conference 2025β 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
12.05.2025 01:18 β π 23 π 10 π¬ 0 π 2
Long COVID May Cause Long-Term Changes in the Heart and Lungs and May Lead to Cardiac and Pulmonary Diseases
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...
07.05.2025 07:10 β π 120 π 65 π¬ 7 π 1
Image of a woman running
Thousands demand withdrawal of review article recommending exercise therapy for chronic fatigue syndrome
The decision to abandon a process to re-evaluate a review recommending exercise therapy for chronic fatigue syndrome (ME/CFS) has reignited calls for the article to be withdrawn.
The 2019 version of the Cochrane Library review, βExercise therapy for chronic fatigue syndrome,β has accumulated 67 citations, according to Clarivateβs Web of Science.
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
04.05.2025 00:50 β π 49 π 17 π¬ 2 π 0
Rory Preston: Our analysis suggests Long COVID, inc. COVID-triggered ME/CFS, now ranks among the most burdensome diseases in the US β ahead of stroke, diabetes & COPD
Itβs a rough estimate, but the message is clear: this crisis canβt be ignored.
We need to scale research, funding & support
Rory Preston: Our analysis suggests Long COVID, inc. COVID-triggered ME/CFS, now ranks among the most burdensome diseases in the US β ahead of stroke, diabetes & COPD
Itβs a rough estimate, but the message is clear: this crisis canβt be ignored.
We need to scale research, funding & support
02.05.2025 08:33 β π 18 π 7 π¬ 0 π 1
Preprint: MedRxiv
Toward a Disease Module for ME/CFS: A Network-Based Gene Prioritization β Paolo Maccallini
"Enrichment analysis identified significant overlaps with sphingolipid metabolism and signaling, and energy-related pathways. Heme degradation, TP53-regulated metabolic genes, and thermogenesis were also identified as possibly contributing to the pathogenesis of ME/CFS."
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
24.04.2025 03:13 β π 9 π 4 π¬ 0 π 0
To the vaxx-and-relax crowd: youβre 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.
07.04.2025 16:28 β π 8 π 4 π¬ 0 π 0
βWe put men on the moon decades ago, but women are still dying from severe nausea and vomiting during pregnancy,β
05.04.2025 10:25 β π 10 π 2 π¬ 0 π 0
@lastweektonight.com @thedailyshow.com @weeklyshowpodcast.bsky.social π What would Jo(h)n do?
01.04.2025 19:54 β π 6 π 2 π¬ 0 π 0
A black background with neon purple and turquoise gaming-esque framing features photos of John Oliver and Jon Stewart facing off. White text reads, βThe Sick Times. The history of ME deserves a late-night spotlight. Thatβs why we started the #JohnVsJonVsME campaign. by Eliza Charley, Emily Fraser, Julie, Katie Klocksin, Melissa Mazur, MarΓa Richardson.β
White text inside a neon colored speech bubble reads, "Medical professionals donβt just neglect people with ME but often only offer them harmful treatments like cognitive behavioral therapy or graded exercise therapy. COVID-19 has added millions of new people with ME to the millions already sick, making coverage of this scandal imperative now more than ever." - #JohnVsJonVsME Core Planning Group:
Eliza Charley, Emily Fraser, Julie, Katie Klocksin, Melissa Mazur, and MarΓa Richardson
In a crisis-filled world, breaking through the noise requires creativity, strategy β and, occasionally, a really good meme. This is why the #JohnVsJonVsME campaign began. bit.ly/4hTwUxa
01.04.2025 19:00 β π 51 π 21 π¬ 2 π 3
UPDATE: RECOVER Long COVID pathobiology grants restored - The Sick Times
Long COVID research grants from the National Institutes of Healthβs RECOVER program will be restored following news stories about their abrupt cancellations and advocacy to restore the funding, accord...
π¨ 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...
28.03.2025 19:36 β π 2071 π 611 π¬ 57 π 65
#NotLongCOVIDCuts
28.03.2025 19:08 β π 0 π 0 π¬ 0 π 0
NIH RECOVER cuts have started. Thereβs 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...
28.03.2025 16:21 β π 3 π 1 π¬ 0 π 1
βWe 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 diseaseβ¦more and more people are suffering from these diseasesβ - RFK Jr.
Chris Cuomo didn't ask about the Long COVID Recover cuts announced this week.
28.03.2025 16:21 β π 5 π 1 π¬ 1 π 0
β€οΈ
24.03.2025 18:19 β π 3 π 0 π¬ 0 π 0
ClinicalTrials.gov
Nipocalimab (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...
23.03.2025 06:47 β π 2 π 0 π¬ 0 π 0
#LongCovidMadness
19.03.2025 16:11 β π 0 π 0 π¬ 0 π 0
What if something as simple as walking across the room became impossible? Thatβs was reality for years. Once healthy& active,Iβm now housebound, struggling with fatigue, brain fog, pain, heart palpitations, and breathlessness. We need research & awareness. #LongCovidAwarenessDay
16.03.2025 02:44 β π 32 π 11 π¬ 1 π 1
Behavioral health scientist specializing in tech & infrastructure in international dev/aid. CEO of mWater & Solstice, the world's largest platform for managing water, sanitation, & health.
mwater.co
solsticeinstitute.com
Mom of 3, partner of @jfeighery
Kiwi/New Zealander π³πΏ with #LongCovid (since 01/06/2022). Former Ophthalmic Technician π¨ββοΈ.
Here to keep up with LC advocacy, LC news, and LC research updates. π°π·ππ©»β€οΈβπ©Ήπ¬π₯Ό
Community powered online fundraisers. #waveofchange2025
https://linktr.ee/waveofchange.global
Hacker and open sourcerer, π¨π¦ settler south of the medicine line, exhausted tech worker (SWE @ Apple). Tea aficionado π΅ Amateur botanist, naturalist, and radio operator. Fighting severe ME/CFS. βΏ https://hashman.ca/
Χ¨Χ’ΧΧ‘ΧΧ ΧΧΧΧΧ©?
I am both a doctor and a patient (other chronic illness than post-COVID). So I know both sides of the bed. Very educational.
Long Covid/MECFS patient, quilter and gardener when able to be active.
Equitable, accessible & affordable treatment for all. The Long COVID Campaign advocates for accelerated research & expanded support programs in U.S. & globally.
#PhD in #FoodPolitics #SocialMovements #FeministTheory #SocialMedia #Food
Joy: #UltraTrail #Running #Yoga #Dog #Cooking #Bike
Life: #MaskUp #CovidAware #DisabilityJustice #Sjogrens #ScentFree
Thunder Honey Snow Studio:
https://thunderhoneysnowstudio.ca/
Disabled USMC Vet | Widow | Living with DDD & #MS | Joomla Dev | Grave Digger | Beekeeper | Sarcastic AF (blame the MS)
MS Sucks: A snarky journal to track your MS bullshit & snarky MS apparel
mssucks.co/links
Using social media to try to find ways to heal from long COVID. And learning things in general.
Wife, Mom, Former Executive, now #disabled by #LongCOVID.
When I feel up to it, I try to use #ArtTherapy π¨ to express what life is like as a LC patient πΌοΈ & raise awareness. I also paint flowers ππΊπ» to bring a little joy.
Chronic disease research and advocacy | CEO at timelessbiosciences.com | Creator of spooniverse.directory | Newsletter: nitajain.com
Professor of literacy education. PhD. Mom: 2 great kids, 2 great rescue pups. Lifelong public school educator. Cajun born, Texas resident. β€οΈFiction & Podcastsβ€οΈCurrently living life at a slower pace with Long COVID.
πUK Registered Charity: 1205685
πLong COVID doesnβt stop the care - neither do we.
πJoin our 2025 Campaign: #SafeAir4All
Born 324 ppm. small spoons & sensory spaces. π₯π§
#ADHD #hEDS #LongCovid #MCAS #pwME #Migraine #POTS #PsoriaticArthritis #Tinnitus #Disability #Adoptee #Climate
ko-fi.com/ladylonghaul
LongCovidKids
Awareness Banner
5 years since Long Covid Changed Lives
π’ EncΓ©phalomyΓ©lite myalgique
#mecfs #emsfc
Handie ππ½π©π½βπ¦Ό
Science journalist covering all fields. Formerly an editor at New Scientist and Nature. Particular fan of health, mushrooms, amphibians, marine life and nature π§ͺπΈ π
Selection of articles here: https://www.newscientist.com/author/chris-simms/