Image of legendary neuroscientist V. Reggie Edgerton standing in his lab with his arms folded
We just lost an absolute legend in the field of neuro-restoration. V. Reggie Edgerton was a true innovator and fierce driver of change for people with paralysis. I never stopped being in awe of how far he would go to help just one person. Rest easy, Reggie. You did so much 💔
therapies and answers. Beth was a giant in this space, and reading this piece today reminded me of how much we have lost with our unacceptable lack of curiosity, rigor and action in investigating these diagnoses. Most days I'm angry. Today I feel I've not been angry enough.
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day, is truly devastating when we think about all we have lost due to our damned inability to study and treat what is important while we have wasted time telling people that CBT and exercise can fix them rather than LISTENING and unrelentingly searching for biomarkers,
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coming is not even the point anymore once suffering reaches a certain level. To lose just one person in this way due to decades of inaction, denial and fundamental misunderstanding of these illnesses should be unconscionable to all of us. To lose as many as we do, day after
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to understand these diagnoses, not just dismiss them, work so hard to find answers for people in this community. People who are in so much pain day after day that they can sometimes no longer bring themselves to believe that help is coming, or maybe that the idea that help is
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who live with #LongCOVID, chronic #lyme/tick-borne illness, #MECFS and other infection-associated chronic conditions and illnesses, as well as their caregivers, families and friends know this dark place. This is also why clinicians and researchers who are legitimately trying
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As usual, @julierehmeyer manages to capture things so beautifully here as she reflects on the loss of her dear friend with #MECFS. The feelings and thoughts so perfectly expressed in this piece by Julie are familiar to so many in the community: so many
www.nytimes.com/2026/04/03/s...
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people can visit a neighborhood clinician and be helped rather than harmed. It really is that simple: quality education can change lives. Thank you to the Chesley Initiative for arranging this important event.
🙏
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a federal effort for widespread education around the country. There are simple things that well-informed providers can do to significantly improve the lives of many with complex chronic illness and the more we can communicate these rapidly and simply, the more likely that
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Great piece from @thesicktimes about our participation in some #LongCOVID and infection-associated chronic condition and illness education in Santa Barbara. Great coverage of some of the challenges of CME-accredited education as well as the need for
thesicktimes.org/2026/03/30/c...
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💙 We have had a pretty intense #longcovidawarenessmonth so will be having a quiet few weeks to recoup
If you missed our advocacy:
🎙️a super talk with @putrinolab.bsky.social on Medical Education
🎁 a gift of a medical binder to you
📣 podcast with @quietriotpod.bsky.social
Catch up with links👇
What an incredible community! Thank you everyone for your interest in our trials for #LongCOVID, #MECFS and chronic #lyme. Our coordinators returned to work today with full inboxes from interest in our decentralized trials. So much gratitude for you all. Thank you! 🙏🏻
understand their illnesses and find actionable treatments, waking people out of a coma, helping athletes reach new heights or helping folks with spinal cord injury (#sci) walk again. They do it all and more and they do it better than anyone. Dream team.
🙏🏻
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I don’t say this nearly enough on here, but I’m so grateful for my team. They’re some of the hardest working, brilliant folks on the planet. Whether they’re pushing the needle on first-in-human #BCI tech, helping folks with diagnoses like #LongCOVID, #MECFS and chronic #lyme
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technology, by emailing coreresearch@mountsinai.org: participation is completely decentralized and open to anyone in the USA!
🙏🏻
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Based on these data, this device has now received FDA approval as a pain relief technology, and we hope it will be a viable, non-drug option for people who live with chronic pain. If you have chronic pain related to #lyme disease, please consider joining our new trial of this
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New publication out now! 📣
Audiovisual entrainment therapy significantly improved chronic neuropathic pain in this double-blind, placebo-controlled RCT! Exciting to see that both pain AND pain medication use decreased in the active treatment arm.
link.springer.com/article/10.1...
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Huge gratitude to my amazing co-authors in this team effort: @Abbey_Sawyer1 @AnnieBAitken @VirusesImmunity @maosbot @HarryLeeming @RorPreston @hmkyale @microbeminded2 @paul_cal and Jenna Tosto-Mancuso.
🙏🙏
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who benefit still holds massive value to the community, since such a large proportion of folks do report benefit from platforms like Visible. Exciting things ahead, but great to make this progress!
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for various reasons, they don't like to track their symptoms and/or it doesn't seem to help. A randomized controlled trial to better understand and explore who is helped and who isn't by symptom tracking would be great, but in the meantime studying how to optimally help folks
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symptoms will fluctuate with the weather.
As with all studies, this paper has some limitations. The main limitation is that we have a bias in our sample from people who have been using the visible app for an extended period of time. Many patients have reported to me that,
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based upon weather conditions, so that is the level of symptom prognostication we want to target for things like #LongCOVID, #MECFS and #POTS. We believe it is achievable (especially for POTS!) because so many people with lived experience have shared with us how much their
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providers to better understand the full picture of complex chronic illness.
Next up, we're working with visible to better understand how the weather and atmospheric conditions can contribute to symptom burden. The Weather Channel in the US now provides "migraine warnings"
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full picture of complex chronic illness (because whenever a person with #LongCOVID, #MECFS and other complex chronic illnesses are actually able to attend an appointment it often means they're having a good day). This is crucial for reducing medical gaslighting and helping
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to the predictive model! As we have said from the very beginning: your patient is your biomarker!
4) Platforms like Visible make it easier for patients to dynamically report information in a way that is low effort and to share it with providers who sometimes don't see the
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is being used to validate what a patient is saying is HUGE. Obviously this shouldn't be necessary, but this is a first step toward digital biomarkers and better understanding of outcome measures that can be used in dynamic disability.
3) Patient self-report is still crucial
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#MECFS and other complex chronic illnesses can represent a massive life upgrade. The ability to prepare for or expect a crash or a bad symptom day is preferable to many than these things just seemingly randomly appearing with no warning.
2) The fact that physiological signal
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patient-reported data? The answer to this question is yes. Not perfectly, but actually quite well. A few important takeaways:
1) Just as we have seen previously in people living with chronic pain, the ability to predict symptom flares and crashes in ppl with #LongCOVID,
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Excited to finally get this one out in @Nature_NPJ! In the largest study of its kind to date, we used data from the @visible_health platform to answer a simple question: can we predict symptom fluctuations and crashes from both the physiological and
www.nature.com/articles/s41...
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more to come. 💪🙏
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