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/

What a week for public health 🤦🏻‍♂️

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/

With very little due respect to this tweet: STOP minimizing getting infected with a virus that causes a life-altering chronic illness, #LongCovid, at least 10% of the time. At the very least, public health orgs that FOLLOW THE SCIENCE should raise the alarm EVERY time a new 1/

https://twitter.com/tuliodna/status/1690753383517347840

variant demonstrates immune evasion and the ability to become the next dominant variant. They should remind the public of strict infection-prevention protocols until cases stabilize: mask, HEPA filters, UV light systems, good ventilation, outdoor gathering, and work from home. 2/

In the light of the damning report yesterday from @betsyladyzhets about lack of @NIH progress on #LongCOVID, I wanted to share a story of my own. In 2014, I was a newly minted young faculty member at Cornell Med. My research institute did this thing where they paid some large 1/ amount (six figures over however many years) to an organization that would mentor young faculty on how to write NIH grants. That was all they did - day in and day out: taught you to write things that the NIH might say ‘yes’ to. Now there were lots of tips and tricks about 2/

Soon, we will be formally announcing the launch of our new clinic: a center dedicated to recovery from complex chronic illnesses. In this clinic we will treat folks with conditions like #EDS, #LongCOVID, #MECFS and #LongLyme. We were incredibly intentional about the decision 1/ to treat many complex chronic illnesses because we truly believe that a commitment to understanding the similarities and the differences between these conditions will serve to develop better and more specific therapeutics for all of them. This categorically does NOT mean 2/

I want to thank so many members of the #LongCOVID #MECFS, #dysautonomia and #Lyme community for sticking up for me on this app as a few uninformed folks launch into silly ad hominem attacks. I appreciate the support, but also want to ensure that noone spends undue and precious 1/ energy responding to this foolishness and here's why: gaslighters are always going to gaslight. As I have said many, many times before - our clinics are deeply interdisciplinary. We employ ALL tools at our disposal to help our clinical communities. In our complex chronic 2/

Incredibly grateful to @theNASEM, @polybioRF and @cohengive for the opportunity to speak at #nasemforum yesterday. Not only was it wonderful to hear from (and see) some incredible colleagues in the field of infection-associated complex chronic illness, I truly appreciated the 1/ opportunity to share our clinical model that we developed for #LongCovid and are working on expanding to other complex chronic illnesses, incl. #lyme, #MECFS and #EDS and receive great feedback from veterans in the space: patients, advocates, scientists and policy-makers. 2/

[TW: story about severe ME/CFS]

Some time ago, a person with severe #MECFS requested that I visit with them. It has been a while since I was there and I’m still working through everything I heard and saw that day. This person had been unwell for many years and their (1/) #MECFS was about as severe as I could imagine being possible. The visit started with a friendly coffee and chat with this person’s caregivers. There were so many emotions and feelings in that conversation: grief, resignation, gratitude, fear and concern for the future and (2/)

Thank you everyone for the interest in this thread. Many have asked for references, here they are (in order of appearance in the thread):
Davis: nature.com/articles/s4157…

Zollner: sciencedirect.com/sdfe/reader/pi…

Giannos: ncbi.nlm.nih.gov/pmc/articles/P…

Turner: cell.com/action/showPdf…
(1/)

https://twitter.com/PutrinoLab/status/1653047893522100224

Douaud: nature.com/articles/s4158…

Fernandez-Castaneda: reader.elsevier.com/reader/sd/pii/…

Choutka: nature.com/articles/s4159…

Bonus (@VirusesImmunity <3): ncbi.nlm.nih.gov/pmc/articles/P…

(2/)

We are in our fourth year of work to understand #LongCovid and we now know things about it thanks to science. After being told again by a quasi-well meaning, if uninformed, clinician that LC is just functional neurological disorder (FND). Here’s a 🧵 on why LC IS NOT FND (1/) So, what *is* FND anyway? Anyone who works in FND has to admit that over the years it has always been a problematic diagnosis with far too many unskilled and uninformed clinicians considering it to be synonymous with conversion disorder (read: “psychosomatic illness”) (2/)

As I reflect today on #InternationalLongCovidAwarenessDay I know that there is a lot of suffering, loss and grief to account for, but I wanted to offer a message of hope. Today, we:
1) Categorically know more about #LongCovid than we did last year
2) Have educated thousands of 1/ clinicians on basic care and management strategies
3) Have some good-quality drug trials in the mix (thanks @hmkyale and @VirusesImmunity among many others)
4) Have #MECFS and #vaccineinjury cohorts being added to clinical trials (finally!)
5) Microclot research is being taken 2/

Exercise and #LongCovid. Again. Always discouraging to see GET receiving funding after the damaging work that has been done in #MECFS and the monumental work done by patients to reverse guidelines that were framed around incompetent, even fraudulent science, but let’s have (1/)

https://twitter.com/berniebissett/status/1620249180114665472

this discussion again:
✅ YES: Many people with #LongCovid experience dysautonomia
✅ YES: Many people with dysautonomia can experience benefit from autonomic rehabilitation so long as it is conducted in a way that respects PEM/PESE
✅ YES: In advanced stages of autonomic (2/)

New year, new (but also quite old) conversations. With few new/transformative treatment options for #LongCovid, #MECFS and other complex chronic illnesses yet to emerge, I wanted to take some time to discuss what it is to be a partner to someone with complex chronic illness. 1/ Partners: I know you did not sign up for this. No one signs up for this. Yet, in the same breath, everyone who enters into a committed relationship with another person(s) signs up for this. I know that not everyone in a committed relationship is (or can be) married, but let’s 2/

Many changes are always needed, of course, but I'm seeing a specific need to shift an aspect of how mainstream media reports on #LongCOVID, #MECFS and other complex chronic illnesses. Recently there has been a slew of articles written by "learned doctors" (or even the 1/ spouses of physicians) that aim to minimize, deny or psychologize #LongCOVID, #MECFS and other complex chronic illnesses. The problem is that mainstream media gives these article too much weight because they were written by folks with certain credentials who work at certain 2/

Them: Microclots and platelet hyperactivation in #LongCovid can't be quantified by conventional standards, so we shouldn't use it as a biomarker
Us: Hold our beer(s).
Step 1: Take blood, spin blood, stain blood, look at blood under a microscope and capture an image of it 1/ Step 2: Read the image into @MATLAB, extract the "green" layer of the rgb image (because that is where all the fluorescing is occuring) and binarize the image so that only things that fluoresce at a certain intensity show up. Count the number of pixels that show up white. 2/

Many folks have tagged me in the @ManvBrain article about #LongCOVID and I have just been so swamped that I haven't had a minute to respond, but I've retweeted some stuff by @meghanor and @sunsopeningband that say a lot of things that I wanted to say. I'll say a few more 🧵1/ The story of #LongCOVID, #MECFS and other complex chronic illness is a story of systemic bias, injustice, and a set of organic, biological illnesses that cannot be well characterized by conventional scientific approaches. I've just been blessed to spend the last week with 2/

I’ve been presenting #LongCOVID material at a few conferences over the last few days, and it has led me to wonder about whether our entire system of professional development and media tips the scales against developing an understanding of complex chronic illness. Short 🧵 1/ Prior to #COVID19/#LongCOVID I interacted with the academic conference and media world through my work with neurophysiology and experimental neuroscience: not exactly simple stuff, but when a conference gave me a 10-20 min slot to speak, I could usually boil it down to 1-2 key 2/

Honestly I just can’t with these “journalists” who claim to be allies of those with complex chronic illnesses, yet they attack studies like the recent VA study showing an alarming number of folks with #LongCOVID with an almost religious fervor. It’s transparent and pathetic. 1/ They claim that they’re doing it because the “real numbers need to be counted”, and “we can’t have people tuning out because of inaccurate reporting”, but really their jargony critiques of the work are designed to awe the uninitiated with their grasp of the science (whilst 2/

So I guess a few days ago someone of vague, national significance with a huge Twitter following declared that the pandemic is over. Don’t get me wrong, I’m overjoyed. Good riddance. But I *do* have a few questions. 1/ 1. Just a few months ago, the @CDCgov (hi team!) released a paper saying that 1 in 5 acute COVID cases end in #LongCovid. Is that done now? Are there no longer cases of Long COVID being caused by #COVID? Or are we just ignoring the problem? 2/

With some new followers on board, I wanted to take the time to re-introduce myself to the #LongCovid community (and everyone else). I’m David Putrino: Director of Rehab Innovation at @MountSinaiNYC, Associate Prof at @MountSinaiRehab for @IcahnMountSinai 1/ I’m a physical therapist with a PhD in neuroscience, and my first passion was working with folks with neurological disabilities. As a kid who experienced a recovery from an acquired brain injury, this is a passion that runs very deep. 2/