If you’ve been following me for a couple of weeks, you will know that I have cytokine preference in and around my Achilles. Despite my attempts to fix it and the incredible advice from the #LongCovid community, gently coaching me through screaming “STOP” at my foot, increasing 1/ my miles, applying leeches, visualizing healing, visualizing ego death, addressing past life trauma (I was a pharaoh), and so many other therapies - can’t thank y’all enough - unfortunately my foot has not improved. So I spoke to a doctor (I know, I know 🚩 🚩). Anyway, this 2/

Today, a post about viral persistence, antivirals and how it plays into the complexity of #LongCOVID and other post-acute infection syndromes (PAIS). If you've been following me for a while, you probably know that I've been saying for a few years now that LC is a complex 1/ chronic disease state that will not have *one* cure, because it doesn't have one root cause that is common across all pwLC. When we're thinking about PAIS, I tend to like the "burning house" analogy: the house can be burning quickly (aggressively progressive disease), slowly 2/

I know #LongCovid twitter has been buzzing today bc @NIHDirector has unambiguously named viral persistence as a driver of LC pathobiology. I’m thrilled to see this too and I view it as an historic moment. However, today I’d like to do a little @microbeminded2 appreciation post 1/

https://twitter.com/californiacodes/status/1780099073468764415

In 2020, before the federal gvt had even acknowledged LC, and my team was burning out trying to manage 1000s of acute COVID patients and 100s of LC patients (then named “post-acute COVID Syndrome”/PACS), Dr Proal reached out to my team and told us about viral persistence and 2/

The folks out there pushing Graded Exercise Therapy (GET) and Cognitive Behavioral Therapy (CBT) for infection-associated disease states like #LongCOVID, #MECFS and chronic #Lyme produce bad science and peddle harmful/dangerous rhetoric are truly deplorable, but what's more, 1/ when you actually dig into their logic and rationale (outside of running expensive courses, siphoning gvt funding for pointless research and patting one another on the backs) for pushing GET and CBT, I think the most disappointing thing is just how simple their thinking is. 2/

Today is #LongCovidAwarenessDay. A day for acknowledgement of the now hundreds of millions of people worldwide who have had their lives indelibly changed by #LongCOVID. This year's Long COVID Awareness Day comes with an edge, though. If we were a thinking, anti-ableist 1/ society, when #LongCOVID was first emerging as a disease state that could cause permanent disability, government leaders would have understood the *existential* threat that we were facing and made decisive moves to protect the population. Instead we saw half measures and weak 2/

This afternoon (US time) I was asked for comment on the recent statements on #LongCOVID in Australia. Here is the statement I provide:
As a scientist, an Australian and one of the world's leading authorities on LongCOVID I was disgusted to see John Gerrard's irresponsible 1/

https://twitter.com/DavidJoffe64/status/1768488423806181646

comments regarding #LongCOVID in the media. The most prominent scientific journals in the world have published systematic reviews of the literature highlighting the fact that 7-12% of acute SARS-CoV-2 infections result in Long COVID - a chronic disease state that has no 2/

I wanted to share some additional thoughts, insights and next steps about our latest #LongCOVID research with the brilliant @VirusesImmunity and the work led by @SilvaJ_C, @taka_takehiro, @wood_jamie_1, @LauraTabacof and so many others. If this is the first time you're seeing 1/

https://twitter.com/VirusesImmunity/status/1764341540485259578

this work, I highly recommend checking out @VirusesImmunity's breakdown of the study. It is detailed and complete. Rather than replicating that, I'm going to share some additional thoughts and next steps for the research. The first thing that this study provides us with some 2/

I've been busy the last week or so, you know, actually working the fucking problem and so I was unable to immediately react when the same old clown car of 'experts' (i.e. clinicians on twitter who have not actually read or understood the literature on #LongCOVID) tagged this 1/ and screenshotted my recent thread on #PEM and exercise. I tell you, these folks are nothing if not predictable, but it also goes to show their fundamental lack of understanding of the pathology at play. I mean, I can understand how a paper like this would excite a group of 2/

I’ve been quiet on this platform this week as I had the privilege and singular honor to be invited to a very remote location in Kenya, working with the Maasai people to better understand their physiology. Why am I telling you this?
1. Because it is objectively awesome
1/





But 2. Because there has been a lot of discourse regarding post-acute infection syndromes such as #LongCovid, #MECFS, and chronic #lyme, the presence of PEM and the relationship to exercise. Every time I bring up the dangers of exercise and exertion when PEM is present, a 2/

You know what, #medtwitter? Fair warning: I’m coming into the week pretty pissed off. I spent the MLK day weekend catching up on reading and thinking about the experiences of people with #LongCovid, chronic #lyme, #MECFS and other PAIS. I finally read Brian Vastag’s touching 1/ obituary for Beth Mazur and I just need to ask: how many more? How many more stories do you need of vibrant, exceptional people being cut down in their prime by these illnesses to finally act? How can you read what @meghanor and @danaparish articulate about chronic #lyme and 2/

Ok. One last time: #LongCOVID, #PEM and exercise. Let's talk and I'll try to be REAL clear and REAL simple. If someone has PEM, exercise is contraindicated. Not only do you not prescribe/suggest exercise, you recommend avoiding exercise. That's it. Simple. No gray area.

Why? 1/ Folks with PEM have experienced changes to their physiology. Changes that result in damage when they exert themselves. @RobWust's excellent new paper digs into some of these changes in detail, but the bottom line is: if you have PEM, exertion causes damage. No gray area. 2/

I don't like any confusion or lack of transparency about our thoughts/approaches regarding our research strategy surrounding #LongCOVID, chronic #Lyme, #MECFS, vaccine injury and other complex chronic illnesses that we study, so I wanted to post an end of year thread to share 1/ where we are right at this moment. This thread is by no means our "end game" in terms of strategy, just where we are at right now and how we're thinking about things. This may certainly change as we learn more and, as always, viewpoints other than ours are valid. So, with that 2/

@Silas33 @ThisisMEtweety @cstroeckw Hi Stephen, I still run my own social media despite being privileged to work with Dr Proal. What I meant in this comment the Christoph is that in folks with LC (and now in vaccine injury as we have been studying pw vaccine injury with Dr Iwasaki) is we see immune profiles 1/ @Silas33 @ThisisMEtweety @cstroeckw where someone has IGG or IGM responses for many different pathogens, ranging from tick- and vector borne bacteria, to viruses like EBV and CMV. There are (IMO) two possibilities to explain these results: T cell exhaustion (as we described in our nature paper this year) leads 2/

Ok. Yesterday I put together a thread about #LongCOVID and the intersection of other diagnoses such as #MECFS. For many of the people reading, this was the tweet that caused a lot of pushback so I wanted to take a moment to clarify. Let me start by apologizing for any distress 1/

https://twitter.com/putrinolab/status/1723749852406853649

caused. I know that this is a complex and charged topic and choosing the correct words in order to not add confusion to the mix is so important, so I take responsibility for not being more clear yesterday. I would also like to share that this is me sharing the philosophy of 2/

Another day, another terrible paper trying to link #LongCOVID to an existing diagnosis. This time #fibromyalgia. IMO, this is deeply counterproductive to people with all complex chronic illnesses trying to access the care and the clinical trials that they need. Our clinic will 1/ provide care and conduct research for people with infection-associated complex chronic illness, starting with #LongCOVID, #MECFS, #EDS and chronic #Lyme hoping to include more conditions over time. However, in the course of providing services to folks with these conditions, 2/

Two long 🧵s in two long days 🤦‍♂️.
Today, let's talk the intersection of language, medicine and #LongCOVID. Use of appropriate, non-minimizing language in medicine has always been a fraught issue and it highlights and centers the need for patient leadership, because although 1/ many clinicians and researchers operate in a top-down fashion (looking to WHO, CDC and NIH for guidance), historically whether we're talking about medicine or more broadly basic civil rights for historically and currently excluded groups, appropriate language evolves and must 2/

As we continue to learn more each day about #LongCOVID and other infection-associated complex chronic illnesses like chronic #Lyme and #MECFS, I want to once again transparently share our team's approach, thought process and philosophy for interpreting science and translating 1/ it into common clinical practice. We are approaching our new center through the lens of establishing novel ways of treating chronic, persisting pathogens and the damage that they cause. This is why our scientific strategy is being led by the incredible @microbeminded2, because 2/

Recently there have been members of the #LongCOVID community on this app who have expressed a significant dislike/dissatisfaction of me generally and the content that I share. A lot of people ask me why I don't respond to these comments, so here is my response: I get it. 1/ These folks are fucking angry and they're angry with good reason. We're in our fourth year and not nearly enough progress on understanding pathobiology, or coming up with new treatments that are easily accessible. It is maddening and it is worth being furious about. I also 2/

Thrilled to announce that the first of our #LongCOVID papers from our collaboration with the incredible @VirusesImmunity has been published in @Nature today. This work is incredibly important as it highlights clear objective differences in the blood 1/ nature.com/articles/s4158… of folks with #LongCOVID when compared to people who did not have LC (some who had never had COVID as well as others who had COVID and fully recovered). These differences came down to three big areas:
1) Hormonal differences: namely extremely low morning cortisol in the LC 2/

I am humbled to announce that thanks to a generous grant from @cohengive our #LongCOVID center (opening early 2024) will work to understand the differences and similarities between LC and #Lyme, #MECFS and other infection-associated chronic illnesses. 1/
mountsinai.org/about/newsroom… I am honored to be partnering with @microbeminded2 and @polybioRF, who will lead our scientific discovery initiatives and clinical trials. At the heart of this center is providing rapid innovation and translation of research and accessible and affordable care for those with 2/

I want to thank the #LongCovid community for so much feedback on the #PaxLC post as it moves forwards. There is a lot to be thoughtful about here and I wanted to give a short 🧵 to address some of the questions/concerns raised from my perspective. Please note that I’m learning 1/ just like everyone else, so this is my perspective on the trial. I believe investigating Paxlovid and it’s potential role in treating #LongCovid is important for a number of reasons. I firmly believe SARS-CoV-2 persistence is a major driver of symptom burden in LC. Patient and 2/