Read on Twitter
1/ Yesterday, I published a piece in @theatlantic about the crisis of #longCOVID and the doctors at Mount Sinai who are urgently trying to help patients living with it: https://www.theatlantic.com/magazine/archive/2021/04/unlocking-the-mysteries-of-long-covid/618076/
2/ The causes of #longCOVID are manifold—and there is a lot we don't know. But what is clear is that we’re facing a major crisis: Informal estimates suggest that 10 to 30 percent of those infected with the novel coronavirus have long-term symptoms.
3/ Science has a “knowledge gap” about chronic conditions such ME/CFS, PTLDS/chronic Lyme, EDS, and more—and indeed has long actively marginalized patients with such conditions. See this tweet: https://twitter.com/EricTopol/status/1368352346984443904
4/ #LongCOVID patients have been dismissed, too. But many doctors I spoke with at academic medical centers understand that the condition demands urgent attention and research; they’re listening to patient groups like never before.
5/ Some patients with #longCOVID have a dysregulation of the nervous system that resembles a condition known as dysautonomia. Symptoms include racing heart, fatigue, brain fog.
6/ At Mount Sinai, doctors are carefully tailoring treatment, including breathing exercises and very gentle rehab modeled on treatment for dysautonomia, to each patient. But for all the advances made, not every patient will benefit from the therapies the center provides.
7/ And we don't yet have definitive answers to the looming question: What is causing this condition, and why?
8/ Some doctors I spoke with told me they suspect that ultimately patients will cluster into groups with different categories of illness, including autoimmunity, classic dysautonomia, and more.
9/ If there is one piece of hope here, it is that the race to understand and treat the long-term symptoms of COVID-19 could advance our understanding of chronic conditions that follow infection—transforming medicine in the process.
10/ Much more research needs to be done to understand the root cause of the problem, and immunologists @Yale, @NIH , and more are working to understand the role of immune anomalies.
11/ Medicine needs to think about how to treat patients with system-roaming conditions like #longCOVID. The U.S. health-care system is not built for the kind of layered care—and support—that long COVID demands, with coordination among many specialists.
12/ One of the hardest things about living with a chronic, poorly understood condition is how alone it makes you feel, as I wrote about for @theatlantic and in my forthcoming book, “The Night Side: The Quest to Understand a Mysterious Illness.” https://www.theatlantic.com/magazine/archive/2019/09/life-with-lyme/594736/
13/ Final thought: Patients have to be partners in the search for answers to the mystery of #longCOVID—much of what we know is due to the efforts of patient groups such as @itsbodypolitic, @longcovidsos, @patientled, and more: https://www.theatlantic.com/magazine/archive/2021/04/unlocking-the-mysteries-of-long-covid/618076/
