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/

This afternoon (US time) I was asked for comment on the recent statements on #LongCOVID in Australia. Here is the statement I provide:
As a scientist, an Australian and one of the world's leading authorities on LongCOVID I was disgusted to see John Gerrard's irresponsible 1/

https://twitter.com/DavidJoffe64/status/1768488423806181646

comments regarding #LongCOVID in the media. The most prominent scientific journals in the world have published systematic reviews of the literature highlighting the fact that 7-12% of acute SARS-CoV-2 infections result in Long COVID - a chronic disease state that has no 2/

I wanted to share some additional thoughts, insights and next steps about our latest #LongCOVID research with the brilliant @VirusesImmunity and the work led by @SilvaJ_C, @taka_takehiro, @wood_jamie_1, @LauraTabacof and so many others. If this is the first time you're seeing 1/

https://twitter.com/VirusesImmunity/status/1764341540485259578

this work, I highly recommend checking out @VirusesImmunity's breakdown of the study. It is detailed and complete. Rather than replicating that, I'm going to share some additional thoughts and next steps for the research. The first thing that this study provides us with some 2/

I've been busy the last week or so, you know, actually working the fucking problem and so I was unable to immediately react when the same old clown car of 'experts' (i.e. clinicians on twitter who have not actually read or understood the literature on #LongCOVID) tagged this 1/ and screenshotted my recent thread on #PEM and exercise. I tell you, these folks are nothing if not predictable, but it also goes to show their fundamental lack of understanding of the pathology at play. I mean, I can understand how a paper like this would excite a group of 2/

I’ve been quiet on this platform this week as I had the privilege and singular honor to be invited to a very remote location in Kenya, working with the Maasai people to better understand their physiology. Why am I telling you this?
1. Because it is objectively awesome
1/





But 2. Because there has been a lot of discourse regarding post-acute infection syndromes such as #LongCovid, #MECFS, and chronic #lyme, the presence of PEM and the relationship to exercise. Every time I bring up the dangers of exercise and exertion when PEM is present, a 2/

You know what, #medtwitter? Fair warning: I’m coming into the week pretty pissed off. I spent the MLK day weekend catching up on reading and thinking about the experiences of people with #LongCovid, chronic #lyme, #MECFS and other PAIS. I finally read Brian Vastag’s touching 1/ obituary for Beth Mazur and I just need to ask: how many more? How many more stories do you need of vibrant, exceptional people being cut down in their prime by these illnesses to finally act? How can you read what @meghanor and @danaparish articulate about chronic #lyme and 2/

Ok. One last time: #LongCOVID, #PEM and exercise. Let's talk and I'll try to be REAL clear and REAL simple. If someone has PEM, exercise is contraindicated. Not only do you not prescribe/suggest exercise, you recommend avoiding exercise. That's it. Simple. No gray area.

Why? 1/ Folks with PEM have experienced changes to their physiology. Changes that result in damage when they exert themselves. @RobWust's excellent new paper digs into some of these changes in detail, but the bottom line is: if you have PEM, exertion causes damage. No gray area. 2/