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/
IMO there is no one better in the world who has been consistently and relentlessly leading and facilitating great research in this space. Part of understanding how to detect AND treat persistent pathogens in the body is to understand how they affect physiology. Why is this 3/
important? Because often we cannot reliably test for evidence of the persisting pathogen itself. Not everyone with #LongCOVID has easily measurable evidence of persistent virus in their gut, only around 30% have circulating spike proteins in their blood, many tissues that may 4/
harbor persistent SARS-CoV-2 can only reasonably be accessed post-mortem, so what I'm saying is that at this time testing for persistent virus, though we still try, is shaky. There is technology on the horizon being developed for radioligands that bind to spike and can be used 5/
in conjunction with PET scanning to search the whole body for viral persistence. I think that this is a very promising direction, but I'm also mindful of the fact that PET scans carry with them a non-zero chance of causing malignancy (~0.16%) - which sounds small until 60M ppl 6/
get tested...either way, we are all in when it comes to new techniques for identifying persistent pathogens, but also IN PARALLEL (not in isolation) we see the value in understanding the effect on physiology of these pathogens. Hence our excitement about our own recent study 7/
in people with #LongCOVID that we completed with the wonderful @VirusesImmunity and other work like that completed by @MaayanLevy_Lab and co-authors this week. These studies highlight biological differences between people with LC and health controls. We strongly acknowledge 8/
that due to the complexity of infection-associated chronic illness not all people with #LongCOVID will show these differences. When media reports on work like this they often want to overstate the importance of the work so that it fits into a nice press-release, but the source 9/
materials will ALWAYS present a more nuanced interpretation. You will not see serious authors of this sort of work saying "we've done it: this is THE biomarker", because that it NOT what our research shows. We also won't say that cortisol is a TREATMENT for #LongCOVID or 10/
even an appropriate treatment for the low cortisol that we saw in the MY-LC cohort we published in @Nature earlier this month. Similarly, my team IS NOT is saying that based on the results of this weeks @CellCellPress paper that all folks with #LongCOVID should take prozac. 11/
I DID mention that the serotonin findings were interesting because it explains why *some* folks with #LongCOVID experience benefit from low dose SSRIs. I know that not ALL people experience benefit, and in fact some people experience worsening symptoms, but we must not ignore 12/
those who experience benefit just because it doesn't fit everyone's narrative. Similarly it is important to highlight physiological reasons WHY these people may be experiencing benefit because for too long this benefit has been framed as treating depression and contributes to 13/
ongoing gaslighting. The same can be said of folks with #LongCOVID, #MECFS and #Lyme who respond to low-dose ativan because it is a mast cell stabilizer NOT because it is treating anxiety. Mechanisms matter, and fitting these pieces of the puzzle are crucial for making sure 14/
less people are being minimized and gaslit as they attempt different treatments. Our team is highly focused on understanding the underlying pathophysiology of #LongCOVID and other infection-associated complex chronic illness. We have multiple clinical trials in the works 15/
that focus on symptom management (such as use of enzymes, antihistamines and nerve stimulation) and addressing persistent pathogens (various antiviral therapies). We believe both to be important because while cures are the goal, people need treatments that can move the needle 16/
NOW, and we also must acknowledge that persistent pathogens cause damage that may need to be fixed even if the persistent pathogen is eventually eliminated. That is why understanding how people with #LongCOVID, #Lyme and #MECFS biologically differ from healthy controls is a 17/
research priority for us. Once again - this is *our* approach and thought process as we tackle these challenging issues. We are aware that there are other approaches exist and have validity, so we are respectful of differing opinions (and ask for the same grace!). One thing 18/
you can count on is that we won't stop looking for new, better and actionable solutions for people living with infection-associated complex chronic illnesses🙏 /end
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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/
be led by the community that it concerns. This is why we need to consistently listen to the community, and be patient-led. As it pertains to #LongCOVID and other infection-associated complex chronic illnesses, the community has frequently told us that the terms "post-viral" 3/
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/
understand that I'm visible in the #LongCOVID community, and in light of such slow progress it can be maddening to hear someone like me bang on about your illness, especially if I'm saying things or receiving praise for things that you disagree with. I fully acknowledge that 3/
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/
group (cortisol is a hormone that does a lot of things, but in the morning its job is to wake you up and get your body ready to face the day. Low morning cortisol can affect your ability to do that). 2) Immune differences: namely evidence of T cell exhaustion and increased 3/
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/
infection-associated complex chronic illnesses such as #LongCOVID, #Lyme and #MECFS. As such, we will take insurance and work to help patients to access expensive off-label meds through ethical formularies such as @mcuban's @costplusdrugs where expensive meds can be found at 3/
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/
kind folks like @microbeminded2 have spent the last few years taking me through the science of persistent pathogens and the damage that they can do, and certainly our own work with @VirusesImmunity as well as the work of many others showing persisting SARS-CoV-2 reservoirs, 3/
I don’t know who needs to hear this, but: surviving an infection doesn’t make you “stronger” for it. Surviving a #COVID19 infection leaves a mark. Like a boxer, every fight leaves it’s mark on your body. It can be an easy fight or a hard fight 1/
but the point is it creates damage. Like a boxer, fighting new opponents can give you experience and make you better at fighting. Doesn’t change the fact that each fight does lasting damage. It doesn’t change the fact that every fight you pick causes damage that could have 2/
been avoided if you just prevented the fight breaking out in the first place, because every fighter knows that there comes a point where experience counts for nothing when the body can’t keep going. The more hits a boxer takes, the more likely it is that we will see the mark 3/