Making ME/CFS, Long Covid & associated conditions widely understood, diagnosable, & treatable. #SolveME #MECFS #LongCovid Donate @ ow.ly/jQji50Srbuv

Joined August 2009
3,182 Photos and videos
With your support, Solve can fund studies that bridge the gap between research & clinical trials, and help scientists move closer to testing new therapies in people with #MECFS and #LongCovid. All gifts made through June 30 will be DOUBLED up to $200,000! solvecfs.org/donate/
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📢A proposed federal rule could let the government cancel active #MECFS research mid-study when political priorities change. The public comment window closes July 13. Take action: ow.ly/i1QA50ZcpSL How to submit a public comment: ow.ly/es5K50ZcpSK #MEAwarenessHour
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Solve ME/CFS Initiative retweeted
“I was unable to leave the house for two years because I simply wasn’t strong enough to walk to the car.” Laura Hillenbrand author of Seabiscuit and Unbroken speaking about living with #MECFS in 2014.
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Watch now! View the recording of our webinar "Sequence ME & #LongCovid: The Search for #MECFS and Long Covid Biomarkers and Subtypes," featuring the @DecodeMEstudy Management Team (@SonyaChowdhury, Prof. Chris Ponting, Andy Devereux-Cooke) youtu.be/v6VQ2593m-8
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1/ A proposed federal rule could let the government cancel active ME/CFS research mid-study when political priorities change. The public comment window closes July 13. Here's what you can do đź§µ
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4/ 2 things you can do right now from home: 📞✉️ Call & email Congress: solvecfs.quorum.us/campaign/… 📝 Submit a public comment (10 min, we wrote a guide): solvecfs.org/how-to-submit-a…
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5/ Deadline: July 13. You don't need to be an expert, just honest and, in this case, not hyperbolic Please share. Most people have no idea this is happening, but it will impact so many of us. #MEcfs #LongCovid #ProtectScience
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Solve ME/CFS Initiative retweeted
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
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Join us for a webinar this Wednesday w/ panelists from @DecodeMEstudy & @actionforme to discuss their Catalyst Award-winning study on Sequence ME and #LongCovid and how it could impact the search for #MECFS & LC biomarkers & subtypes. ow.ly/mOKJ50YZ86t
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In celebration of Equal Research Day on Wednesday, June 10, the Society for Women’s Health Research (@SWHR) is hosting the webinar, "Advancing Women’s Participation in Clinical Trials: Barriers, Innovations, and Actionable Solutions." Register here: swhr.org/event/advancing-wom…
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Solve ME/CFS Initiative retweeted
A recent review proposes integrating POTS, ME/CFS, and Long COVID into the neuroimmunology subspecialty. Here is their compelling case. \ Overlapping Drivers of Disease: The authors outline several major overlapping pathophysiological mechanisms shared by POTS, ME/CFS, and Long COVID. This includes: 1. Autonomic Dysfunction (Dysautonomia) 2. Mitochondrial Dysfunction 3. Cerebral Hypoperfusion 4. Immune Dysregulation 5. Neuroinflammation 6. Autoimmunity \ The Harm of Psychiatric Misdiagnoses: For decades, patients have been wrongly labeled with "functional neurological disorder," anxiety, or somatization because routine tests often look normal. \ A Call for Better Diagnostics: Researchers and clinicians urgently need advanced tools such as: - 7T MRIs - Targeted PET scans - Autoantibody and cytokine panels - Comprehensive autonomic function testing Routine tests are simply not enough. \ The Authors’ Core Proposal: Classify and treat POTS, ME/CFS, and Long COVID as neuroimmune disorders under the subspecialty of neuroimmunology. This shift would: • Improve clinical care • Accelerate research • Enable effective neurotherapeutics (including repurposed immunomodulatory and anti-inflammatory treatments) Thanks, Dysautonomia Clinic, for the awesome paper! #MECFS #POTS #LONGCOVID #PASC Read more here: buff.ly/HqR7NKH
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Solve ME/CFS Initiative retweeted
WBUR: 'The scope of long COVID is bigger than we think, Mass. researchers say' “I think Long Covid is a serious national and global problem that demands attention from governments and international bodies" - Dr. Ziyad Al-Aly wbur.org/news/2026/06/01/lon…
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Solve ME/CFS Initiative retweeted
Do you know an ✨ exceptional ✨ research advocate? Nominations are now open for Research!America's 2027 Advocacy Awards! 🏆 Honor outstanding advocates for medical, health, and scientific research by submitting your nominations today. 👉 Explore the list of available awards and learn more about nominations: researchamerica.org/advocacy… 📆 All nominations must be submitted no later than Friday, July 17, 2026. #RAAwards #Research #Advocacy #HealthResearch
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