Putrino Lab Profile picture
Nov 30 17 tweets 4 min read Read on X
I’ve been seeing some classic Monday morning quarterbacking as the necessity of #COVID19 lockdowns are being discussed once again. As usual, we’re seeing a lot of hyperbolic statements and attempts to create conversations around comparative suffering which is always just a 1/
garbage response to anything. The reality is that we had a once in a century pandemic. The virus was spreading like wildfire and we had limited options to keep the public safe. Not just from COVID but from #LongCOVID. In March and April of 2020, New York City was the epicenter 2/
of the global pandemic. Things were rough and we still hadn’t shut down. My whole team was pulled into the hospital and deployed to provide support to stretched inpatient services since outpatient services were closed down, Central Park was a triage tent, the refrigerated 3/
trucks were on Madison Ave storing bodies, an average inpatient unit was losing ten patients a day and sitting in our outpatient center, the Abilities Research Center, was a whiteboard where we were counting down the number of free beds we had. When we hit the double digits, 4/
the state government made the decision to lockdown and we held our breath. You have to understand that once we ran out of beds we had no plan B: we were just out of beds. That was it. After lockdown, we watched our free bed number dip into single digits…and then it held. The 5/
lockdowns had worked. In the meantime, from day 1 we were concerned about social isolation and loneliness from the lockdowns, but with the shortage of hospital beds, the death rate and the emerging threat of #LongCOVID, lockdowns were the *least worst option*. Don’t get me 6/
wrong - this doesn’t mean you stick your head in the sand about lockdown problems: with the help of our friends at @LogitechG, our team coordinated the distribution of hundreds of iPads to hospitals all over NY so that people could say goodbye to critically ill loved ones. 7/ Image
We worked with @SamsungUS and @Take2Interact to get hundreds of workbooks and free wifi out to low income kids in NY and NJ who didn’t have devices to engage in remote schooling, and we partnered with the incredible @socialcreaturz to start building out programs to address 8/ Image
loneliness and social isolation head-on: launching @sitgrit so that folks with disabilities could engage in free, remote exercise programming just like everyone else because the big fitness chains were NOT accommodating (and still haven’t). We launched Bonded by Baby to build 9/
social ties for new parents who were at risk of loneliness, and many other programs to educate people about the health risks of loneliness and social isolation. To this day, we have continued these programs, because the effects of loneliness and social isolation are still 10/
being seen and felt. To this day, we fight for the idea that social health should be viewed as a crucial dimension of overall health: as important as physical and mental health. To this day, we continue to fight for people with #LongCOVID and many other chronically ill folks 11/
for whom lockdown has never ended due to their heightened risk of reinfection and the consequences that such a reinfection brings to their health status. We continue to build social and peer support programming for these folks to combat loneliness. Anyway, all of this is to 12/
say: lockdowns saved lives. If we had locked down earlier, many of my colleagues would have been spared the repeated trauma of losing patient after patient, many of my colleagues would have been spared horrific #LongCOVID that has ended their career and torn their lives apart 13/
and many people in NYC might still be alive and many more still not living with #LongCOVID. This is not to say that lockdowns were not without cost, but to frame it as though it was the wrong choice in the face of what we faced in the beginning is either an uninformed or 14/
intentional misread of the situation. So to anyone lamenting the psychological effects of the lockdowns, ask them: what did they do for people suffering from loneliness and mental health issues during COVID? What are they doing now to create government sponsored programs for 15/
people who are still struggling and what do you plan to do for people with #LongCOVID and other chronic illness/disability who still face considerable risk from the ongoing pandemic? If they don’t have good answers to these questions, it’s likely that they’re criticizing 16/
these policies for political expediency rather than any real concern for public health, and tbh we need a lot less of that sort of performative chatter and a whole lot more action. We’re in this together and the people we SERVE deserve better. /end

• • •

Missing some Tweet in this thread? You can try to force a refresh
 

Keep Current with Putrino Lab

Putrino Lab Profile picture

Stay in touch and get notified when new unrolls are available from this author!

Read all threads

This Thread may be Removed Anytime!

PDF

Twitter may remove this content at anytime! Save it as PDF for later use!

Try unrolling a thread yourself!

how to unroll video
  1. Follow @ThreadReaderApp to mention us!

  2. From a Twitter thread mention us with a keyword "unroll"
@threadreaderapp unroll

Practice here first or read more on our help page!

More from @PutrinoLab

Nov 20
Feels like a good time for a thread about all things exercise for people living with infection (and exposure)-associated complex chronic illnesses (IACCs) such as #MECFS, #LongCOVID and chronic #Lyme /tick- and vector-borne illness. Let’s start with a trip down memory lane. 🧵 1/
In the before times, many of us who treated postural orthostatic tachycardia syndrome (POTS) and dysautonomia worked with folks who did not have associated IACCs. Many of us were unaware of IACCs because it wasn’t part of our training in a substantive way and what training we 2/
did receive urged us to “treat” with a psych referral. So we treated a lot of POTS that was highly responsive to exercise-based interventions: modified CHOP, Levine, Buffalo treadmill protocol. Evidence-based protocols that worked more often than they didn’t, especially when 3/
Read 23 tweets
Nov 6
I know today is a frightening day for many with #LongCOVID, #MECFS, chronic #lyme and other infection-associated chronic conditions. Today, all I can offer is a small piece of advice and a small piece of reassurance. Advice: please take care of yourselves and practice some 1/
emotional pacing today. If the election news is affecting you, avoid doom-scrolling, poking the fresh wound and take some time to quietly process the news. What’s done is done, so try to manage as best you can right now. Action can come later.
Reassurance: I’m proud of the 2/
work my team has done and the discoveries we have made over the last four years. We did it without a cent of NIH funding. Our 6+ clinical trials we will complete over the next 3+ years will be completed without a cent of NIH funding. We won’t quit on you and there are some 3/
Read 5 tweets
Oct 5
Was swamped this week, but wanted a moment to talk about this #LongCovid work that was finally published. I’m grateful to @resiapretorius and @ArneauxK for leading this incredible work and to all the co-authors who contributed. Honored to be included.



1/thieme-connect.com/products/ejour…
To start, it is important to acknowledge that endothelialitis is present in other infection-associated chronic conditions (IACCs), such as those diagnosed with pre-2020 #MECFS and chronic #lyme and other chronic tick- and vector-borne illnesses as well, so much of what is laid 2/
out here is relevant to other IACCs, but the somewhat unique relationship of the ACE-2 receptor in SARS-CoV-2 pathology makes some of the mechanistic details here likely unique to #LongCovid, however this should be viewed as a starting point for research and understanding in 3/
Read 13 tweets
Sep 18
A deeply moving story from @thesicktimes covering the reality that @thephysicsgirl and Kyle having been living for years now since Dianna got #LongCovid. The reality of bed bound individuals with infection-associated chronic conditions is grim. While 1/

thesicktimes.org/2024/09/17/for…
I will not be attending @NIH’s #RECOVER-TLC meeting next week (because I have at least 1000 ways to be actionably more productive to pw #LongCovid than to scream into that unmasked echo chamber), I sure do hope that someone brings up how badly they have failed to fund research 2/
that includes bed-bound individuals. This is in spite of incredible folks like @hmkyale and @VirusesImmunity creating replicable and scalable models for decentralized clinical trials for pw #MECFS, #LongCOVID and chronic #lyme that enable participation from home. We have so 3/
Read 6 tweets
Sep 4
Dangerous garbage being presented “science writing”. Two *actual* facts surrounding #COVID infection:
1. Your risk of #LongCOVID, a currently incurable chronic illness, after surviving an acute COVID infection currently sits conservatively at ~6-7%
2. Your risk of LC increases 1/
with each infection.

Now, in the face of this information, there are really five (or so) types of reactions:
1. Disbelief and denial
2. Being unaware or uninformed of the risk
3. Believing appropriate caution is necessary to avoid Long COVID
4. Believing it is worth the risk 2/
to yourself AND OTHERS to live your best pre-COVID life
5. Not having the financial freedom to not risk yourself and others by not taking precautions

Regardless of which of these 5 lanes you live in, won’t change the first two FACTS. So, as a person of questionable influence, 3/
Read 7 tweets
Aug 3
Just in case you were wondering why I’m just one big constant eye roll when these so-called experts who treat functional disorders tell us that they “have the tools” to treat complex patients and frame those of us who are actually doing the work as “anti-recovery activists”, 1/
let’s look at a recent publication that was a meta-analysis of studies evaluating the efficacy of treating so-called “functional limb weakness”: a branch of FND that the authors abbreviated to FND-par (short for ‘paresis’). If you dig into the paper you 2/sciencedirect.com/science/articl…
Will see that they did a meta-analysis of 7ish studies looking at outcomes of 348 individuals who were treated for FND-par. Treatment varied across studies but largely consisted of psychotherapy and/or PT. Outcomes were largely self-reported impression of improvement. So, they 3/
Read 12 tweets

Did Thread Reader help you today?

Support us! We are indie developers!


This site is made by just two indie developers on a laptop doing marketing, support and development! Read more about the story.

Become a Premium Member ($3/month or $30/year) and get exclusive features!

Become Premium

Don't want to be a Premium member but still want to support us?

Make a small donation by buying us coffee ($5) or help with server cost ($10)

Donate via Paypal

Or Donate anonymously using crypto!

Ethereum

0xfe58350B80634f60Fa6Dc149a72b4DFbc17D341E copy

Bitcoin

3ATGMxNzCUFzxpMCHL5sWSt4DVtS8UqXpi copy

Thank you for your support!

Follow Us!

:(