Amy Rochlin
@amyrochlin
CEO @CODA_Research. Working to accelerate progress for patients living w/ complex multisystem disorders. Opinions are my own.
HBD Rory! Grateful for all you do for our community! #MECFS #LongCovid #IACCs #chronicillness
It is my birthday this week 🥳🎈 And I'm a running my bday fundraiser for @wecrunchme! If you appreciate our work *and* have the means, please consider chipping in a digital 🍺 If unable, retweets are v gratefully received too! TYSM, link below #MECFS #LongCovid
Chronic, complex disorders have long lacked the bold, patient-centered, collaborative scientific acumen they need. That’s finally changing. @ImmunoFever is at the center. The MAESTRO study is mapping #LongCOVID, #ChronicLyme & more thru real-time science. wsj.com/health/chronic…
Neuroinflammation doesn’t stay in one lane. This new Science review shows how immune activation drives damage in MS, stroke, Alzheimer’s, Parkinson’s—and echoes what we see in #LongCOVID #MECFS #MCAS #POTS Overlapping diseases. Shared drivers. 🧠 science.org/doi/10.1126/sc…
As a parent of an #NPDH patient, who has lived with a 24/7 headache for 12 years, I can say this is a brutal condition. She is never pain free. #Migraine #Headache #Research #Pain
New Daily Persistent Headache (#NDPH) pain may resemble #Migraine or tension-type headache. Watch Courtney Seebadri-White's FREE "Beginner’s Guide to #Headache Types" interview from the 2024 MWS: ow.ly/BtjA50WpeBz 👉 What has been your experience with NDPH? What helps? 🧠🧡
The massive #'s & enormous heterogeneity of our patient population requires a scaled innovative approach to research: patient-involved, data-driven, collaborative, AI-powered, and well-organized. This is not just one patient or one disorder. Join our alliance. @CODA_research
A new NIH RECOVER study followed hundreds of children under 6 and found that up to 15% met criteria for probable Long COVID—many with symptoms lasting over a year. Distinct symptom patterns were seen by age group. Poor appetite, chronic cough, sleep issues, and fatigue were…
Post-COVID-19 Femoral Head Osteonecrosis Exhibits Mast Cell Clusters, Fibrosis, and Vascular Thrombosis: Key Pathological Mechanisms in Long COVID-19 Bone Degeneration 🔥For many a new #LC presentation needing THR(Total Hip Replacement)😲 ➡️'Оsteonecrosis of the femoral head…
Love this. #omics
What are "omics"? A good schematic cell.com/neuron/fulltex… could add epigenomics, immunomics, microbiomics, glycomics, exposomics, etc
👏👏👏 Fascinating tweets from @VirusesImmunity about a new #LC/#MECFS Stanford study identifying sex specific differences in mt ROS/antioxidants (in ♀️) & change in lipid pathway (in ♂️.) 🤯 How much more will we learn as old studies done on mixed gender subjects r repeated?
A fascinating new study by Vishnu Shankar et al. @stanfordimmuno shows that oxidative stress is a shared characteristic of ME/CFS and Long COVID in lymphocytes due to inability to clear reactive oxygen species. This happens in sex-specific manner. (1/) pnas.org/doi/abs/10.107…
This paper surfaces important insights. We need to understand more for patients. Many are diagnosed with #CraniocervicalInstability or #AtlantoaxialInstability. What can be done to ease their symptoms? It’s time to find out. #MECFS #LongCovid #Migraine #Pain #POTS #IBS
Orthostatic intolerance isn’t just heart rate or blood pressure. It’s about cerebral blood flow. Up to 58% of people w/ ME/CFS or long COVID may be misdiagnosed bc CBF isn’t measured. We're launching a #CCI study to learn more. ahajournals.org/doi/full/10.11…
🌟 Exciting news! We just launched a brand-new webpage where you can explore U.S.-based clinical trials for #MECFS, #LongCovid, & related conditions. This is your chance to help drive discovery and bring us closer to answers. Click here to learn more: ow.ly/4Gcr50Wqhrn
Together, we can drive research to deliver understanding and answers for chronic, complex disorders. To learn more or donate visit complexdisorders.org #socialmediagivingday
The ADDRESS-LC #LongCovid clinical trial is still enrolling! The trial looks at bezisterim, an investigational anti-inflammatory drug that crosses the blood–brain barrier. 1/
The interconnectedness of these complex disorders needs to be studied AT SCALE - to deepen the understanding of hypotheses and findings of studies such as this one. It's the interplay of systems (vs. symptoms) that require our collective focus. #endometriosis #sibo #ibs #ibd
New research identifies a connection between #endometriosis and small intestine bacterial overgrowth (SIBO), conditions that often go undiagnosed for years. The Study The authors report this is the first case control study that found that 91.9% of women with endometriosis…
There’s enormous overlap and very real differences across this patient community. Research must be conducted across systems AT SCALE to address their complexity. #LongCovid #MCAS #EDS #MECFS #POTS #Dysautonomia #Migraine #Endometriosis #CRPS #IBS #Sjogrens #Fibromyalgia
Neuroscience and immunology are deeply connected. Disruptions in brain-immune signaling can trigger pain, fatigue, cognitive issues, and autonomic dysfunction, hallmarks of ME/CFS, Long COVID, MCAS, and related conditions. At CODA, we support research at this critical…
If you’re in the New York area and have #LongCOVID, please consider joining our low dose rapamycin clinical trial! The results are going to be crucial to help us understand how and when to prescribe this exciting drug target. 🙏🏻
Participate in research assessing the impact of sirolimus on symptom relief in Long COVID patients. For inquiries, contact [email protected].
Participate in a trial testing the effectiveness of Truvada and Miraviroc in reducing symptoms of Long COVID. For more information, contact [email protected].
"multiple regions of the brainstem, in particular the medulla oblongata, pons and midbrain, showed abnormalities consistent with a neuroinflammatory response." @tessfalor @ThosVarley #LongCOVID #MECFS neurosciencenews.com/brainstem-infl…
Read the latest from CEO @amyrochlin. This fight can’t wait. Patients deserve answers NOW—not someday. CODA's a research engine tackling the toughest questions in #MECS #LongCOVID #EDS #POTS & more. Join us. Fuel the science. Move progress forward. complexdisorders.org/ourceosblog/lu…
Why this fight can’t wait. Patients like my daughter Grace and @CODA_research's Alexandra deserve answers NOW—not someday. Join us. Fuel the science. Move progress forward. complexdisorders.org/ourceosblog/lu… #MECSF #LongCOVID, #EDS, #POTS #Migraine #EDS #MCAS #Endometriosis #MCAS #IBS