A few comments that might be helpful after a phenomenal couple of weeks learning from brilliant people in #MECFS, #LongCOVID, chronic #Lyme and infection-associated chronic illness (IACI) communities and still buzzing after yesterday's @polybioRF meeting. These illnesses are 1/ complex and are going to require equally complex science to solve. When it comes to studying and managing these illnesses, I rarely feel sure about anything, but if I'm sure of one thing it is this: anyone telling you that one drug/one approach will solve all cases of an IACI 2/

Quite disheartening to return from 10 days working with some of the most important and relevant #MECFS and #LongCOVID researchers in the world and to read this drivel being allowed through from @bmj_latest. Let's be unambiguous about this: BMJ has 1/

bmj.com/content/389/bm… allowed an OPINION piece to be published about #MECFS that flies in the face of:
1. current consensus science
2. recent NICE guidelines that were corrected so as to not include recommendations based on fraudulent/discredited data (PACE Trial)
3. voices of ME/CFS patients
2/

Excerpt of an email received by a mentee of mine who is currently transitioning to independence as a career researcher. This is happening all over the country right now. The “equity research” my mentee was proposing was centered around novel neurotechnologies that increase the 1/ safety, privacy and independence of people with disabilities. Canceling programs like this doesn’t make America great, it makes America weak, behind the times, not at the bleeding edge of innovation and just kinda mean. Canceling programs that uplift early career scientists 2/

Two steps forward, one step back. For #LongCOVID awareness day today I had the honor of joining thousands of other New Yorkers in a peaceful protest to stand against many of the current administration’s recent damaging and thoughtless policies and executive orders. Let there 1/ be no misunderstandings here: many of the executive orders and policies being proposed and passed into law will erase entire populations of historically and currently excluded communities. Under the facile goal of “improving efficiency”, decisions are being made that not only 2/

A tumultuous 24-ish hours since our preprint was released yesterday. I mentioned that this was a fraught issue and I genuinely do understand that people have mixed feelings about the work. I wanted to take some time to respond to some of the concerns and comments that have 1/ arisen. First, and most importantly: #LongCOVID (LC) and post-vaccine syndrome (PVS) both exist. Anyone claiming that all LC or even *most* LC is actually PVS is unserious and is making up nonsense that is not supported by the consensus science. I cannot stress this strongly 2/

Grateful to continue to be able to do great work with the amazing team at @YaleMed, led by @VirusesImmunity and @hmkyale. Today one of our preprints dropped on what is a fraught and divisive topic: vaccine injury or post-vaccine syndrome (PVS). Before
1/medrxiv.org/content/10.110… we dig into the results, I want to state a few things very clearly about the team that conducted this work:
- We firmly believe in the value of vaccinations. However, we also believe that drugs will always have side-effects in a percentage of the population. Holding these two 2/

This is an amazing example of how certain things simply cannot be broken down to a magic pill or formula and I think this is a wonderful #scicomm learning opportunity.

Note the communication from @hubermanlab. 1) Makes a statement about how a key opinion leader says you can 1/

https://twitter.com/hubermanlab/status/1889323186489033145

*dramatically* increase endurance and strength. 2) Makes the caveat (“start slow”). Simple, direct, informative. Right?

Ok, so what’s the secret?
- Once a week, jog a mile with a kettle bell that is equal to 30% of your own weight in a briefcase carry. Switch arms from time 2/

Honored to be a part of the work led by @polybioRF and @microbeminded2 published in @TheLancetInfDis discussing actionable strategies to adequately address SARS-CoV-2 persistence in #LongCovid. This paper covers discourse on how to look for and measure severity of persistence 1/

https://twitter.com/polybiorf/status/1889299846105911777

so that it can be used as an outcome measure in clinical trials, discussion about promising antiviral and monoclonal agents: what has the best chance of working and when combination therapies should be considered, the critical need for more sophisticated clinical trial designs 2/

Feels like a good time for a little reminder: Countries aren't supposed to be run like businesses. Countries are supposed to spend money to support and serve their people. This means spending to support those living below the poverty line, the disabled and historically 1/ excluded groups. This means investing in research that doesn't immediately have a profitable output so that future innovations can be incubated and accelerated through companies that form within the country that supported the work. This means engaging in international aid so 2/

Wanted to check-in with these new @NIH changes that are going to affect so many. First let me remind everyone: I run 6 hybrid clinical/research centers, each with a specific clinical focus. Unlike the vast majority of my colleagues, federal funding sources account for less 1/ than 20% of my operational budget across all of these centers, so understand that my thoughts on this topic have nothing to do with self-preservation or any sort of self-serving agenda. First, sweeping change of this magnitude is going to cause great pain for thousands and 2/

@MissIgraine @annesmithmcc @KellyGoodmanPhD I'd like to set the record straight here on 3 issues:
1) There is ample peer-reviewed evidence to show that even mild SARS-CoV-2 can lead to long-term issues such as cognitive loss. A nice summary is here:
My central point, as always, is that if we are 1/nejm.org/doi/10.1056/NE… @MissIgraine @annesmithmcc @KellyGoodmanPhD an informed society that follows the science, we should not take any viral infection lightly: long-term consequences of repeated mild infections are still unclear. The goal, always should be to avoid infections. This should not be a controversial take.
2) As others in this 2/

With everything that has happened over the past few days with regard to layers of censorship being imposed upon workers for US federal agencies around reporting gender, race, ethnicity and disability status, I just need to make an appeal to my colleagues who work in spaces 1/ adjacent to government: federal governments of any country can make uninformed policy decisions about what their workers are and aren't allowed to do. This is what democracy means and although this may lead to unconscionable consequences for historically and currently excluded 2/

Reflecting on the past week a few basic themes and lessons that strike me as worth repeating over and over:
1) First contact providers for #LongCOVID, #MECFS, chronic tick-/vector-borne illness and other infection-associated chronic conditions should be PCPs/family medicine. 1/ These are the folks that most people will come to with the non-specific symptoms that often emerge at the start of IACCs, so it is imperative that these professionals know how to identify and diagnose them. IACCs should be a categorical part of a coherent differential Dx for 2/

Those who have been following me for a while will know that I have been a voice for @NIH reform for quite some time. Regardless of the changes the current administration will bring to NIH, the events of the past 24hrs have been extreme and have caused, IMO, unnecessary stress 1/ and instability to hundreds of thousands of researchers and research support staff. I would strongly argue that whatever steps toward reform that the NIH want to take can be done without media blackouts, mass confusion and complete shutdown with no indication of next steps. 2/

Since my episode with the wonderful @longcovidanswer has been released highlighting viral persistence as a major driver of some #LongCOVID pathology, I’ve been asked repeatedly, “what should we do about it?” - totally fair question. Here is my proposed roadmap: 1/ First, let me point out that there are antiviral programs and drugs out there that people have been trying to mixed effects: e.g. Truvada, Maraviroc, Maraviroc + Statins, Valtrex, Valtrex + Celebrex, Paxlovid and various combos of these. This is NOT medical advice or urging 2/

@Gmwetz Hi Marco, what a great question. I'll start by saying that unfortunately it is hard to get drugs approved for improving mitochondrial function because it is so hard often to measure modulations in mitochondrial function in a person. There are supplemental approaches, of course 1/ @Gmwetz but many of these supplements haven't necessarily been proven to boost mitochondrial function, but they are able to boost materials that mitochondria need to make energy or reduce oxidative stress. These are supplements like NMN, NAD+, nicotinamide riboside, glutathione, 2/

Banger of a #LongCovid paper in pre-print today showing that replicating viral DNA can persist in hamsters up to 80 days after intranasal infection.

The study team were able to isolate and amplify infectious virus in 84% of experimental animals. 1/

biorxiv.org/content/10.110… This is really interesting data that, once again, provides rationale and paves the way for the need for more antiviral and monoclonal trials (and combination antiviral + monoclonal trials!). For those following the actual persistence data this is just one more study confirming 2/

After a fairly fraught week I just want to take a moment to take a moment to say that IMO violence and the taking of a human life is almost always morally wrong. However, I think there is also a message that everyone should hear: 1/ Denying healthcare to people who have paid into it for their entire lives based on arbitrary or algorithmic factors is violence. Threatening to stop covering the cost of anesthesia for a surgery if that surgery surpasses an arbitrary amount of time is violence. Making the 2/

Great week for remote monitoring studies! Proud to get this one out in pre-print as well! In the previous study we pre-printed this week, we used data from the @visible_health app to see if we could predict symptom flares (we could), this study is a 1/ researchsquare.com/article/rs-538… little more simple: we asked the users of the Visible Health (>1300 respondents) if monitoring their symptoms is helpful for disease self-management. The overwhelming response is yes - particularly for understanding and managing their energy budget. Respondents to this survey 2/

So excited to finally see this study out in pre-print! This study is the largest of its kind to date: Using data from 4,244 people with #LongCOVID, #MECFS and other complex chronic illnesses, we took hundreds of thousands of data points across hundreds of days to see if we 1/ could predict crashes using physiological and self-reported data. Turns out - yes we can. Data related to variations in HRV could predict crashes in individuals with quite good accuracy. The caveat: your data was good at predicting your patterns of crashing, but not good at 2/

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/