At the Harvard/MIT Martinos Center, Dr. Mario Murakami and the VanElzakker lab are using ultrahigh resolution 7T fMRI to understand how changes to cerebrospinal fluid (CSF) flow in people with Craniocervical Instability can produce a phenotype similar to that seen in ME/CFS and other neuroimmune conditions. The brain relies on cerebrospinal fluid to carry out metabolic waste that builds up during normal physiological processes, acting as a “garbage disposal,” as explained by Murakami. Changes to healthy CSF flow may result in the buildup of these metabolites in the brain. Said Murakami, “There is a compromised structure of CSF flow in CCI [patients] compared with healthy controls, which means that maybe this is part of the mechanisms which drive the symptoms—the brain fog, the pain, the fatigue, the autonomic dysfunction.”

I want to take a moment to explain the @HHSGov TOPx Sprint competition and why it matters so much for patients living with invisible illnesses: ME/CFS, Long COVID, POTS/orthostatic intolerance, EDS/HSD, MCAS and related disorders. Our collaborative research team has the possibility of securing $1 million to advance diagnostics and treatments for conditions that have been overlooked for far too long. When Dr. Mikki Tal learned of the competition, she reached out to a group of experts in the field with an idea: bring together a research "super team" that could combine our expertise, technologies, and programs to accelerate progress. And the MAESTRO Health Innovators team was born. Here's how the pieces came together. @MIT's MAESTRO, the largest clinical study in MIT's history, led by @MIT_TRG, focuses on collecting meaningful physiological and biological measurements from patients with complex chronic illnesses to better understand what's happening in their bodies and identify actionable biomarkers. Through this work, researchers began exploring the promise of nailfold capillaroscopy, a quick, noninvasive way to visualize the tiny blood vessels near our fingernails. Could this technology help reveal abnormalities in the microvasculature that might otherwise go undetected? Could these measurements help us better understand disease mechanisms and ultimately guide treatment? From this promising line of investigation, MIT CAPRIO was born, with the ambition of creating the largest nailfold capillaroscopy dataset and studying whether these measurements can help identify meaningful biological patterns across patients. At the same time, @CODA_research launched the CODA Vascular Initiative, to advance diagnostics and treatments focused on microvascular dysfunction (problems affecting the body's smallest blood vessels) and endothelial dysfunction (when the cells lining blood vessels fail to properly regulate blood flow, inflammation, and clotting). We also launched CODA's AI research program to help researchers analyze complex data, identify patterns across biological systems, and accelerate scientific discovery. And here's where bringing these programs and experts together gets really exciting. Our team developed Measure it to Cure it, an AI-powered platform designed to help answer some fundamental questions: What should we be measuring in patients? Which measurements can meaningfully distinguish illness from health? And how do we get promising diagnostic technologies into the hands of clinicians and patients who need them? The platform already connects 37 public data sources, bringing together information on disease burden, research evidence, clinical trials, healthcare facilities, and emerging measurement technologies. CAPRIO provides a real-world opportunity to test this approach, starting with nailfold capillaroscopy. The team plans to expand capillaroscopy into 20 additional clinics in November, creating opportunities to collect data, evaluate the technology, and help more patients access objective testing. And this approach can extend beyond capillaroscopy to other technologies that measure what's happening inside the body. For too long, patients have lived with debilitating symptoms while being told their tests look normal. We need better ways to measure the physiological and biological abnormalities that may be driving their illnesses. We want to make the invisible visible. That's what this competition represents . An opportunity to bring extraordinary researchers together, build on the science already underway, and accelerate the path toward meaningful answers and better treatments for patients. Voting will start soon and we hope you're support this collaborative effort! Our goal will be to include clinicians and other research organizations however possible. Patients can't wait. Neither will we. @ImmunoFever @mhornig @TomerTalVH @tylerdmyers @technopolymath Paige Hansen Colburn WATCH HERE: youtube.com/watch?v=53zp-OtN…

We’ve been blown away by the response to my interview with @BBCSport & @KatieFalkingham , thank you so much to everyone who has taken the time to read and engage with it ❤️ millions of views across multiple platforms really is immense. We have since written to @andyburnham , calling on the @UKLabour government to fund research into this horrific illness. I know there’s so much more we could say, but with limited capacity, we’ve tried to focus on the lack of funding, resources in the NHS and how much it’s actually costing the government. As you can see on the slides, it has been drastically underfunded compared to other illnesses and it is currently costing the UK Government far more than it would cost to fund research. ME is most often a post-viral illness. Therefore, since the start of the Covid pandemic, we’ve seen cases increase drastically and they will continue to increase. We need funding into research urgently. With estimates of people with ME being around 1.35 million, this is a lot of lives destroyed. I’ve had thousands of messages on multiple platforms since sharing my story so please bear with me ❤️ Thanks to @ThereForME_UK and @wecrunchme for the stats.

We have now raised $39K for @CODA_research, a research foundation focused on ME/CFS, Long Covid, and other complex chronic illnesses. I am utterly floored by the generosity of this community. Yes, many donations have come from friends & family who would've contributed regardless of the cause, but there have also been plenty of donations from complete strangers in the patient community. Thank you all from the bottom of my heart. The fundraiser will run for another 2 weeks. Please consider donating or sharing with your network. Keep fighting.

We have now raised $39K for @CODA_research, a research foundation focused on ME/CFS, Long Covid, and other complex chronic illnesses. I am utterly floored by the generosity of this community. Yes, many donations have come from friends & family who would've contributed regardless of the cause, but there have also been plenty of donations from complete strangers in the patient community. Thank you all from the bottom of my heart. The fundraiser will run for another 2 weeks. Please consider donating or sharing with your network. Keep fighting.