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Aug 14 6 tweets 2 min read Read on X
Really proud of my team for getting this out. It has been a heavy lift. When we opened the Cohen Center for Recovery from Complex Chronic Illness, we wanted to create a place that could provide the very best of care for people with #LongCOVID, #MECFS,
1/

beckershospitalreview.com/quality/patien…
chronic tick- and vector-borne illness and other infection associated chronic illnesses. We wanted to make sure that this could be done billing codes that are covered by insurance, and most importantly, we did *not* want to become a destination clinic - we wanted to create a
2/
model that could be followed by others to scale to thousands of potential clinics around the country and the world to help to manage the hundreds of millions of people who are living with IACI diagnoses. This manual, available free of charge to everyone, is a first step in
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pursuit of that goal. It is intended as the start of a larger conversation about clinics sharing wisdom and practices. It is a living document that we intend to continually update as new practices and new needs become available AND as we learn more ourselves. It is our hope
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that this work will encourage others with profound knowledge in this space to also freely share it with the community for the sake of hundreds of millions who are suffering with diagnoses that have been unjustly denied, shamefully misrepresented and terribly mismanaged. It is
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our biggest hope that release of this manual will start a movement: let’s share knowledge, practices, wins, losses and lived experience. Collectively we have the power to forge better care for people with IACIs 🙏🏻💪🏼

/end

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More from @PutrinoLab

Aug 15
This is an issue that has been coming up today from various folks and I want to address it. As I said when we launched the manual, this is the beginning of a conversation, not the "final word". I also want to say that reading it with 20/20 hindsight, I understand why this 1/
language has been inflammatory to members of the community, because it the feedback I have received is that it "feels like we're trying to say that exercise is curative even with PEM, without saying the word exercise". I regret that this was the impression that our wording
2/
gave. In previous communication and education we have been quite clear that IF rehabilitation protocols are being attempted (and not all of our patients with PEM are considered suitable for rehabilitation), then PEM is the factor that governs all aspects of care delivery, from 3/
Read 13 tweets
Aug 7
I was asked about my opinion on this recent study into #MECFS and I wanted to share here as well. First and foremost, sincere congratulations to the research team for some stellar work. I will never stop cheering for groups that are working to uncover the biological 1/
underpinnings of these illnesses. Next, I think that the study is credible and well-conducted with a great, big data set that agrees with other studies in the space that have shown that, yes - people with #MECFS, #LongCOVID () and perhaps even other 2/medrxiv.org/content/10.110…
IACIs may express genes associated with a great vulnerabilities toward mitochondrial dysfunction, pro-inflammatory cascades, endothelial dysfunction, immune dysregulation and neurological dysfunction. It is entirely feasible that expression of some of the genes identified in 3/
Read 14 tweets
Jul 11
I'm glad to see @BuzzFeed running educational content about tick- and vector-borne illness like #lyme, but I must disagree with Dr Shapiro, who is quoted in this article, that an infected tick *has* to be on for 24-36 hrs to transmit Lyme Disease. The
1/
buzzfeed.com/jillianwilson/…
public should be aware that transmission of Borrelia Burgdorferi, the bacteria that causes #Lyme disease can happen sooner than 24-36 hours. In fact, nymph ticks (much harder to spot than full-grown) have been known to transmit Lyme to a host in under 12 hours. Furthermore,
2/
ticks carry other pathogens than just Borrelia! Potwassan Virus can be transmitted inside of 15 MINUTES, Anaplasma, Ehrlichia and Babesia definitely can be transmitted within 12 hours (sometimes less), and Rickettsia infection has been shown to occur in less than 6 hours in
3/
Read 8 tweets
Jun 27
In honor of #PrideMonth2025, I just wanted to take a moment to discuss the crucial role of intersectionality, gender and inclusion in research, specifically as it relates to our research involving #LongCOVID, #MECFS, chronic #lyme and other complex chronic illnesses. As we 1/
work to understand these illnesses, we must often contend with the fact that they are characterized by a diverse array of symptoms that cause dynamic disability (fluctuating severity of symptoms that can lead to fluctuating levels of disability). As we've learned, so many 2/
different things can cause symptom changes: exertion, temperature fluctuations, dietary and hydration changes, chemical, mold and pathogen exposures and many other variables. Attempting to track all the variables that can influence someone's day-to-day health when they live 3/
Read 17 tweets
Jun 17
As with most of the harmful #LongCOVID rhetoric that gets occasionally flung in my direction, I was going to ignore this particularly egregious take, but a few members of the community who I respect asked me to respond and this account also chose to sling mud at someone that 1/
I truly admire, @VirusesImmunity, and I just cannot let that stand. Let's start with the obvious: we are not "heroes", we are not "saviors". We are people. People who saw a disaster occurring and did our best to lend a hand. I am fallible, I am frequently wrong and if you 2/
follow me or have seen my tweets you know that I am open to constructive feedback and honest, good-faith communication. I have 5 years of receipts on that in this community and 2 decades of receipts in other communities. Now, let's get specific about the roadmap document. In
3/
Read 19 tweets
Jun 14
Since I posted two threads about PEM yesterday, some general feedback themes have been coming up, so I just wanted to address them:
1) Thank you to those who rightly pointed out that in my description of PEM I should have mentioned that PEM can have permanent consequences to
1/
someone's baseline. Not dissimilar to what we see in multiple sclerosis, some people can bounce back from their PEM without a noticeable effect to their baseline, whilst others appear to experience progressive loss of function with every bout of PEM (or a combo of the two).
2/
Since we can disambiguate who is who, it is CRUCIAL that clinical providers educate PEM on pacing to help folks manage their daily energy budget without pushing into PEM.
2) A few people took exception to me calling pacing the "magic word". That's fair. I didn't mean to imply
3/
Read 6 tweets

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