Putrino Lab

The incredible, indomitable, inspirational Alice Wong has left us.

I'm so grateful to have known her on social media, and so grateful for all the words she shared with us and all the actions she encouraged us into making.

May we live up to her example.

(so you don't have to go to Instagram)

RIP @sfdirewolf.bsky.social. Your fierce advocacy and powerful legacy will never be forgotten, and we won't stop fighting for everything you championed.🙏😔

A still showing Muhammad Ali standing over an opponent with a quote: “Impossible is just a big word thrown around by small men who find it easier to live in the world they've been given than to explore the power they have to change it. Impossible is not a fact. It's an opinion. Impossible is not a declaration. It's a dare. Impossible is potential. Impossible is temporary. Impossible is nothing.”

#LongCOVID, #MECFS, chronic #lyme scientists and clinicians: This energy! Bring it each day someone tries to force you to follow the status quo, bring it each time someone tries to slow you down just because their insecure ass can't keep up. People are depending on us. Move faster! Show urgency!

Plz give/share if you can. We're also going to try to prioritize some MCAS-friendly goods for our CoRE patients (things like canned pumpkin, dried beans, plain white rice, gluten-free unflavored oats, canned pears or peaches (in water or their own juice), quinoa, millet, etc) 🙏

Flyer describing our food drive and food drive needs. If you are able or interested in donating to the food drive please email ARCClinic@mountsinai.org

Hi all, across our six centers serving people with spinal cord injury, stroke, TBI, #LongCOVID, #MECFS, chronic #lyme, new parents, cerebral palsy and many other conditions, roughly 20% are dependent on SNAP benefits for survival. So we're trying to pull together a food drive! 1/

Delighted to receive this in the mail yesterday and congrats to Giorgia Lupi on getting this out. THANK YOU for taking time to discuss #LongCOVID and the need for accurate, inclusive and honest representation of the people we collect our data from. Amazing work. 🙏🏻

this pathogen. I, for one, feel that the work from Spela and her colleagues has sparked some necessary and difficult conversations. Sometimes we need to be shocked into action. 🙏
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act with curiosity, urgency and scientific rigor to rapidly find solutions for not only the hundreds of millions suffering with #LongCOVID, but the billions who are potentially at risk because we still do not fully accept the risks we face by allowing unmitigated spread of
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cases of LC, I can share my lived experience that we have a subset of previously fit and healthy patients who now experience recurrent infection after recurrent infection: bacteria, parasites, viruses. Susceptibility to mold, fungus and environmental toxins. We need people to
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someone who had the honor of working alongside @VirusesImmunity and team to publish some of the first work out there credibly showing that concerning immune sequelae were occurring in subsets of people with #LongCOVID, and as someone who directs a clinic that has seen >5000
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seriously and urgency in addressing the injustice of billions of people being infected again and again with a pathogen that is damaging their immune system whilst being told that everything is fine. That is the call to action that I hope people most heed from this piece. As
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or one of the million other platforms and self-publish: let's have discourse not division. My final point on this topic is that, whether you agree with this piece or not, I appreciate the urging in this review piece for urgency: urgency in taking the crisis of #LongCOVID
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work they have produced rather than social media attacks. A reminder that there are clear mechanisms for response to these pieces that are encouraged by editors of journals: write a letter in response to the review and set forth a well thought-out counterpoint or go on Medium
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that the authors of this work put together a detailed review of the literature. The author list consists of distinguished and highly published researchers in both the #LongCOVID and #HIV research world and I would argue that they have earned thoughtful discourse around the
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speak about their disease, especially in such dispassionate terms. In the present, with 20/20 hindsight it is almost exclusively viewed as a positive piece for the HIV/AIDS intellectual movement. This is not to say that people cannot have diverging opinions, but it is to say
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and Its Metaphors" by Sontag in 1989. Many prominent gay and HIV+ academics and writers welcomed the intervention from Sontag as they argued that it de-stigmatized the framing and the language around AIDS, whilst others argued the exact opposite and questioned her right to
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consideration by the authors, but claiming that an article stigmatizes an entire community is different and should be done with care and precision after checking in with the community at large. The closest example I can draw to this historically is the publication of "AIDS
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this as respectfully as possible - an individual does not get to decide what stigmatizes an entire community, the collective must agree. You can feel stigmatized by something and you can express those feelings as an individual, and that doesn't make it less valid for
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all) activists voiced concern about the analogy. So, I suppose my first point is that analogy and metaphor has historically been extremely important in understanding complex illness. Next, let's discuss stigma. I think that this can be a delicate topic and so I want to say
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it resembled congenital immunodeficiencies being observed in kids with SCID. It is also worth noting that although making this analogy was hugely important for research and treatment progress and was also a turning point in addressing stigma around HIV and AIDS, some (but not
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with T-Cell depletion, fungal infections and recurrent and highly specific pneumonias and drawn a parallel between that and Severe Combined Immunodeficiency (SCID) in kids, we would not have had the term "Acquired Immunodeficiency Syndrome". It was named that precisely because
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cancer that is currently resulting in near miraculous outcomes for patients who just a few years ago would have had few options. Not to mention, ironically in this conversation, that if it weren't for clinicians like Michael Gottlieb and others in the 80s seeing AIDS patients
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ischemic pain in other tissues, solidifying angina as a vascular problem and not a "nervous" or "moral" one. If cancer researchers hadn't learned from the autoimmune world, we wouldn't have the entire breakthrough field of checkpoint inhibitors and other immunotherapies for
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analogy and metaphor from existing, settled physiology has historically led to medical breakthroughs. Our knowledge of angina pectoris would not have progressed as rapidly had 18th- and 19th- century physicians not noticed that the pain that patients were reporting resembled
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this question. I wanted to focus my comments on this thread on some of the discourse that has emerged around this paper. The first is that it is valuable to learn from analogy and metaphor. Whether it is an entirely novel illness or a variant of an existing illness, creating
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The purpose of the paper is to answer a direct question: Is use of the term "Airborne AIDS":
a) justifiable
b) overly provocative and wrong, or
c) is the truth somewhere in between

The paper (IMO) does a good job of exploring the available literature that we have to answer
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This paper was published last week about #COVID, #LongCOVID and its parallels. First, despite the provocative title, I urge people to read the paper the whole way through, rather than making assumptions about what you presume the paper will conclude.

t.co/Mqf822zWJV

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Working on it! 🙏🏻

imagine a better group to be leading the way as experts in lived experience of chronic conditions such as #LongCOVID and #MECFS. Thanks to all my co-authors on this project and to our non-Sinai friends @rorpreston.bsky.social, Luke Martin-Fuller and Harry Leeming. More to come! 🙏
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enhancement products like Whoop - the key is that the platforms need to be designed by folks with sufficient domain knowledge about the user community to drive meaningful change. In this case, @visible_health was designed and built by people with lived experience and I can't
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