A few things come to mind. One of the most important lessons from modern medicine is that progress follows biology. Patients with diabetes aren't asked to prove their illness through symptom questionnaires alone. We measure glucose metabolism. No one diagnoses a heart attack based solely on fatigue and chest discomfort. We measure biomarkers, blood flow, and tissue injury. We don't debate whether skin cancer exists because a patient reports a suspicious mole. We examine the tissue, study the biology, and make a diagnosis. The path to treatment has always been the same: understand the biology. That is why I find the comparison in this paper between complex disorders and multiple sclerosis compelling. The transformation of multiple sclerosis did not occur because people became more sympathetic to patients. It happened because researchers developed tools that allowed them to see the disease. MRI revealed lesions. Immune profiling uncovered underlying mechanisms. Biomarkers provided objective measures of disease activity. Biology changed everything. Complex disorders are in the midst of the same scientific ambition. The future is not asking physicians, researchers, policymakers, or society to simply believe patients more. The future is generating a level of biological understanding that makes these diseases impossible to ignore. In this paper there are excellent highlights for deeper testing and I agree, we should be investing aggressively in: • 7T MRI to visualize the brainstem and autonomic control networks• • PET imaging to understand neuroimmune activity and neuroinflammation • Advanced immune profiling to characterize the cellular and molecular drivers of disease • Cerebral blood flow measurements to quantify physiologic dysfunction • Longitudinal studies that connect biological changes to patient outcomes (oh how we need these). • I'd also add AI-driven research to add speed and depth These technologies and approaches give us the opportunity to move beyond broad symptom categories and begin identifying the biological pathways that drive illness. Medicine advances because better biology leads to better diagnostics. Better diagnostics lead to better clinical trials. Better clinical trials lead to better treatments. Better treatments lead to health. That is how we transformed diseases like multiple sclerosis. That is how we transformed cancer. That is how we transformed cardiovascular disease. And that is how we will transform and treat complex neuroimmune disorders. When patients ask me why research matters, when all they need is better care: This is why. Better science drives better care. And the exciting part is that we can do this now. We have technologies that previous generations of researchers could only dream of. We have advanced imaging. We have immune profiling. We have AI. We have wearable devices. We have large clinical datasets. We have unprecedented computing power. The challenge is bringing the data, technologies, researchers, clinicians, and patients together in ways that allow us to see the biology more clearly. That is why expert collaboration matters. No single lab, institution, specialty, or dataset will solve these conditions alone. Progress will come from connecting expertise across neuroscience, immunology, autonomics, imaging, computational biology, and clinical medicine. The opportunity is here. @CODA_research is following a specific path: finding answers for patients. CODA CCD unites 8 experts in the field and then will go out to 50 more experts on the best ways to evaluate and treat craniocervical dysfunction. Immune studies (Anktiva and Inspiritol) are based on specific exploration of biomarkers, subgroups. Vagus nerve modulation shows huge promise for RA - how do we bring it to our diseases. AI data specialists - both internal and our partners - are using multiomics and clinical data to subtype and get a clearer picture of underlying biology. This is just a small amount of where we're going with our partners. And we partner with as many leading scientists and other foundations - we believe we are stronger together. One of the greatest moments we had this year, was coming together with @actionforme Schmidt Initiative for Long COVID, @PlzSolveCFS @weandmecfs to get a massive @DecodeMEstudy long-read genomics study launched - with an amazing ￡4.5 invested by th UK govt because of this partnership. That wasn't my idea - it was @SonyaChowdhury and team's brilliant idea and we were glad to be a part of it. I have a child in this space and I talk to patients every single day who are suffering beyond measure. I know patients can't wait for better care. The more we work together, the more experts engage, the better we can use science to accelerate real progress and the more people we can help. Quickly. Thank you @dysclinic et. al. for the paper. And @BrainInflCollab for calling it out for me this morning. buff.ly/HqR7NKH

Six years since the height of the pandemic, the scientific community remains baffled by long Covid. But there might finally be a way forward for long Covid treatment—if only you were allowed to talk about it. wired.com/story/the-painful-…

La realidad de este país es una homofobia y transfobia absoluta. Miedo a las diferencias. Terror ante lo que no comprenden. Odio, matanzas.

La FLACSO México lamenta el sensible fallecimiento del Dr. Raúl Pacheco-Vega entrañable profesor-investigador, colega, amigo y miembro muy querido de nuestra comunidad académica. Expresamos nuestras más sentidas condolencias a sus familiares, amistades, colegas, estudiantado y a las comunidades académicas de las que formó parte.

This has practical implications for patients, very damaging ones. It discourages investment in real treatments and real research. It encourages doctors and friends/family to treat our illness as “in our heads” and something be visualized away

Ugh. The link to my old thread failed to post and search isn’t working - here’s the YouTube link to the video though, start at the 17 minute mark for the section where he says all the complex illness patients have BPD and not to provide ER care: youtu.be/E7d6ZrqWOWM?si=7ytZ…

Have you read all the sources you ever cited? During my PhD we, along with dozens of other papers, cited a paper that I later found did not contain the result for which it was commonly cited. I should be banned I guess.