@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/

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/

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/

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/

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/

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/

https://twitter.com/theipaper/status/1831051824452792589

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/

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…

I try to give everyone the benefit of the doubt and I try to be fairly slow to anger, but jfc I just can’t with these #MECFS- minimizing clowns. Thank you, as always, to @davidtuller1 for taking the time to listen to every argument from would-be clinicians and every gut- 1/

https://twitter.com/davidtuller1/status/1817848173282341103

wrenching detail of abuse and dire malpractice (which all too often ends in death) from people with #MECFS and their families. Your body of work is beyond reproach and I can only guess at the toll it takes, but we are so grateful for the work you do. Keeping receipts on this 2/

I’ve been fortunate enough to have some time to stand back and reflect on the state of the field of post-acute infection syndromes(PAIS)/infection associated chronic conditions (IACC) such as #LongCOVID, #MECFS and chronic #Lyme and I wanted to share some opinions. Before I 1/ begin, a couple of disclaimers:
1) This is a topic that brings with it a lot of passionate points of view. I’ve turned off comments because I don’t want arguments to break out in this 🧵
2) I’m not a patient and I’m not a part of any advocacy org. I’m a scientist and an ally 2/

NGL, @CDCDirector’s response on #LongCOVID isn’t it. Dr Cohen - you have the power to chart a helpful course forward for millions of desperately ill Americans if you have the courage to support pwLC and, most importantly, follow the science: plz don’t let this be your legacy. 1/

https://twitter.com/coco_chatel/status/1806036101519552778

Just telling people to vaccinate is not a strategy against #LongCOVID: how about HEPA filters, far UV lights, ventilation, regular testing and masks?? These are feasible strategies that can significantly reduce acute infection risk. You have a friend with LC? OK - so maybe 2/

Excited to have this amazing new #longcovid work out in the world thanks to an always amazing team and with continued gratitude for our collaboration with @VirusesImmunity 👯‍♀️

Please check out Akiko’s comprehensive tweetorial on the preprint, and I’ll add just a few comments. 1/

https://twitter.com/virusesimmunity/status/1803517986764103874

This, along with what was recently pre-printed by @DrDenDunnen, solidifies directional relationships between autoantibodies (AABs) and #LongCOVID symptoms. What is driving the proliferation of these AABs? Many candidate theories ranging from virally-triggered autoimmunity to 2/

If you’ve been following me for a couple of weeks, you will know that I have cytokine preference in and around my Achilles. Despite my attempts to fix it and the incredible advice from the #LongCovid community, gently coaching me through screaming “STOP” at my foot, increasing 1/ my miles, applying leeches, visualizing healing, visualizing ego death, addressing past life trauma (I was a pharaoh), and so many other therapies - can’t thank y’all enough - unfortunately my foot has not improved. So I spoke to a doctor (I know, I know 🚩 🚩). Anyway, this 2/

Today, a post about viral persistence, antivirals and how it plays into the complexity of #LongCOVID and other post-acute infection syndromes (PAIS). If you've been following me for a while, you probably know that I've been saying for a few years now that LC is a complex 1/ chronic disease state that will not have *one* cure, because it doesn't have one root cause that is common across all pwLC. When we're thinking about PAIS, I tend to like the "burning house" analogy: the house can be burning quickly (aggressively progressive disease), slowly 2/

I know #LongCovid twitter has been buzzing today bc @NIHDirector has unambiguously named viral persistence as a driver of LC pathobiology. I’m thrilled to see this too and I view it as an historic moment. However, today I’d like to do a little @microbeminded2 appreciation post 1/

https://twitter.com/californiacodes/status/1780099073468764415

In 2020, before the federal gvt had even acknowledged LC, and my team was burning out trying to manage 1000s of acute COVID patients and 100s of LC patients (then named “post-acute COVID Syndrome”/PACS), Dr Proal reached out to my team and told us about viral persistence and 2/

The folks out there pushing Graded Exercise Therapy (GET) and Cognitive Behavioral Therapy (CBT) for infection-associated disease states like #LongCOVID, #MECFS and chronic #Lyme produce bad science and peddle harmful/dangerous rhetoric are truly deplorable, but what's more, 1/ when you actually dig into their logic and rationale (outside of running expensive courses, siphoning gvt funding for pointless research and patting one another on the backs) for pushing GET and CBT, I think the most disappointing thing is just how simple their thinking is. 2/

Today is #LongCovidAwarenessDay. A day for acknowledgement of the now hundreds of millions of people worldwide who have had their lives indelibly changed by #LongCOVID. This year's Long COVID Awareness Day comes with an edge, though. If we were a thinking, anti-ableist 1/ society, when #LongCOVID was first emerging as a disease state that could cause permanent disability, government leaders would have understood the *existential* threat that we were facing and made decisive moves to protect the population. Instead we saw half measures and weak 2/