uniting patients, researchers & clinicians to advocate & research 30+ neuroinflammation-linked conditions with overlapping symptoms, causes & responses.
Joined June 2023
- Tweets3.6K
- Following75
- Followers9K
- Likes1.3K
Brain Inflammation Collaborative retweeted
1/ What’s even worse is that I had Sjogren’s symptoms since my teens but it took decades, and becoming bed bound, before I was diagnosed.
I had to figure out my own diagnosis because I didn’t fit the traditional picture which we now know is misguided.
Brain Inflammation Collaborative retweeted
Join us on 9/22 for a free webinar w/ panelists from the @BrainInflCollab who will discuss using the unhide® real-world data platform to recognize health patterns & trends to support conversations w/ healthcare providers.
Sign up:
ow.ly/wLB150ZyLEb
#MECFS #MEAwarenessHour
ALT Headshots of six panelists promoting a Solve M.E. webinar on the Brain Inflammation Collaborative unhide health platform, September 22. Pictured is a QR code to register.
Brain Inflammation Collaborative retweeted
Join us on 9/22 for a free webinar with panelists from the @BrainInflCollab who will discuss using the unhide® real-world data platform to recognize health patterns and trends to support conversations with healthcare providers.
Sign up:
ow.ly/wLB150ZyLEb
#MECFS #LongCovid
ALT Flyer for a Brain Inflammation Collaborative event on Sept 22 about using Unhide to visualize health trends with expert speakers.
Brain Inflammation Collaborative retweeted
In this study, people diagnosed with ME/CFS and Long Covid borrow devices, shipped free, for 3 months. While borrowing, they contribute data through the @BrainInflCollab unhide® SolveTogether platform.
Brain Inflammation Collaborative retweeted
Register for a webinar hosted by @BrainInflCollab "#LongCovid Research Updates & Hispanic Community Impact," feat. Solve Ramsay Research Grant winner & co-director of @StanfordHealth #MECFS & Long Covid Clinics, Dr. Hector Bonilla. 6/25 @ 12 pm PT.
zoom.us/webinar/register/WN_…
Brain Inflammation Collaborative retweeted
Highly recommend!
🧠 Join us Jan 22 @ 3pm ET for Untangling Brain Fog with Mara Kuvaldina, PhD (Columbia). Learn how neuroinflammation shapes cognition & what new neuromodulation research means for chronic illness. 🔬✨ Sign up for free: tinyurl.com/bic122
Brain Inflammation Collaborative retweeted
Register for our free Oct. 14 webinar, “The Unified Platform: Advancing Research Across #MECFS, #LongCovid, & Other Chronic Conditions" w/ @CJagdfeld (@BrainInflCollab), Megan L Fitzgerald, PhD, & Chris Nowak, and learn how you can get involved.
Sign up: ow.ly/luTT50WGMXV
Brain Inflammation Collaborative retweeted
Register for our free Oct. 14 webinar, “The Unified Platform: Advancing Research Across #MECFS, #LongCovid, & Other Chronic Conditions" w/ @CJagdfeld (@BrainInflCollab), Megan L Fitzgerald, PhD, & Chris Nowak, and learn how you can get involved.
Sign up: ow.ly/luTT50WGMXV
Brain Inflammation Collaborative retweeted
Vital 🧵on biomedical research, the bottlenecks, and what’s being done about it 👇
Infection-associated chronic conditions and illnesses (IACCIs) affect tens of millions of U.S. citizens (1).
This includes (but is not limited to):
- Chronic Lyme
- Long COVID
- ME/CFS
- MCAS
- POTS
- PANS
Yet there are no cures.
This is why science moves slowly and how to supercharge it...🧵
ALT ID: Decorative image of a researcher pointing to a anomaly on a brain scan.
Brain Inflammation Collaborative retweeted
💥Solve M.E., @BrainInflCollab, ChronicleBio, @CODA_research & @careevolution launch a historic partnership to accelerate ME/CFS, Long Covid & IACCI research!
More data, faster breakthroughs.
Learn more: ow.ly/cVih50VJT2f
#ChronicIllness #LongCovid #MECFS #Research
ALT A white graphic with blue circles in the top right and bottom left corners includes the headline, "Together, We Accelerate Hope." Listed beneath the headline are organizational logos for Solve M.E., the Brain Inflammation Collaborative, Chronicle Bio, Care Evolution, and the Complex Disorders Alliance.
Brain Inflammation Collaborative retweeted
when i saw a neurologist early on into having LC, i mentioned dysautonomia and was so excited to start figuring out what to do about it. then she said “i mean, they can’t treat any of that dysautonomia, so why would you want to do the testing for it?”
67% of 2,314 Long COVID patients surveyed reported symptoms of a dysregulated autonomic nervous system such as:
- A drop in blood pressure when standing
- Brain fog or cognitive disturbances
- Dizziness or light-headedness
- Heartbeat irregularities
- Gastrointestinal issues
- Tingling or numbness
- Bladder dysfunction
- Shortness of breath
- Sleep disturbances
- Chest pain
- Fatigue
This translates to 38 million Americans with Long COVID dysautonomia.
But there is a problem...🧵
ALT ID: Illustration of a person with the central and peripheral nervous system visible throughout the body.
Brain Inflammation Collaborative retweeted
Neuroinflammation mediated by microglia is considered the primary cause and pathological process of anxiety.
Brain Inflammation Collaborative retweeted
Epstein-Barr Virus (EBV) is associated with increased risk of developing:
- Rheumatoid arthritis
- Multiple sclerosis
- Type 1 diabetes
- Celiac disease
- ME/CFS
- Lupus
A new EBV study in multiple sclerosis (MS) reveals an important clue that might explain this association...🧵
Brain Inflammation Collaborative retweeted
Thank you very much @BrainInflCollab
Good summary of our review article on pituitary damage in patients with #MEcfs, #longCOVID and post-vaccine syndromes.
👇🏼👇🏼
Brain Inflammation Collaborative retweeted
I’m so greatful for everything you share here. I’ve experienced mostly all of these due to Long Covid and your shares help me through the harder times reminding myself it’s all down to inflammation and look at them as symptoms. I hope you will succeed reaching your goal soon❤️
Brain Inflammation Collaborative retweeted
#Pans #Pandas #UK #Ireland #strep #doctors #paediatrics too many similar frightening stories, too many families not listened to.
Brain Inflammation Collaborative retweeted
Please share this brave & informative tweet/video far & wide. 🙏🏻💚
There needs to be more awareness, research & effective treatment pathways for #Pans #Pandas inflammation of the brain & body triggered by an infection #Strep or a Virus #Covid, #Ebv etc
#PansPandasHour
Brain Inflammation Collaborative retweeted
Immunopsychiatry has so much potential for #autism disorder breakthroughs. #SevereAutism #Nonverbal #ProfoundAutism
We envision a world where mental health professionals rule in the possibility that underlying chronic inflammation is impacting (a subset of) their patient's mental health conditions.
Join our mental health mission by sharing this content!
Quote source: medium.com/inspire-the-mind/…
Brain Inflammation Collaborative retweeted
Many patients with psychiatric diagnoses in my practice have neuropsychiatric manifestations of systemic disease. Treat the underlying systemic disease, and the neuropsychiatric manifestations get better. #NeuroTwitter
Brain Inflammation Collaborative retweeted
It’s so important to understand the associations and implications that are increasingly being recognized in research. It may lead to new paradigms of treatment.