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/
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/
let me remind you: #LongCOVID is life-changing and incurable. LongCOVID is caused by #COVID. We still have no way of predicting who will emerge unscathed from a COVID infection. The only way to avoid getting LongCOVID is to not get COVID. Let me also remind you that while 4/
@ClareWilsonMed ridicules people “putting sticks up their nose” if you should, god forbid, get #LongCOVID and you don’t have evidence of infection, things get harder for you to access good care. They shouldn’t, but they do. So since the “science writer” who penned this opinion 5/
didn’t lay it all out honestly in favor of publishing a bit of clickbait that hurts public health, next time you hear drivel like this, think about the 5 lanes of people and which lane you want to be in. Think about the fact that those minimizing COVID have been minimizing it 6/
since 2020 and have been consistently wrong since 2020. Magical thinking doesn’t make you safe and speaking realistically and quantitatively about risk stratification doesn’t make you a fearmonger. Writing junk like this DOES make you dangerous. Grow up, Clare.
/end
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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/
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/
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/
Ok, so after that (unintentional) cliffhanger, let's talk about energy production infrastructure and post-exertional malaise (PEM) in people with infection- and exposure-associated chronic illnesses (IACIs) such as #LongCOVID, #MECFS, chronic #Lyme and more. Let's start with 1/
how cells produce energy. ATP is the body's energy currency, and we only know how to make this currency from glucose, so our bodies need to turn glucose into ATP. They can do so either aerobically (using oxygen and mitochondria) or anerobically (fast, but inefficient, no 2/
mitochondria). Energy is never free in this universe, so both processes produce both ATP and waste
- Aerobic: 36-38 ATP units per glucose unit, producing reactive oxygen species (ROSs) as waste
- Anerobic: 2 ATP units per glucose unit, producing pyruvate and lactate as waste
3/
Wanted to put forward a thread about #PEM since there have been some new developments and also because I just need to get some of this out of my head and work through it. Folks with infection- and exposure-associated chronic illnesses (IACIs) like #LongCOVID, #MECFS, 1/
chronic #lyme and other tick- and vector-borne illnesses will often experience post-exertional malaise (PEM). In fact, it is often thought of as a cardinal hallmark of many of these diagnoses. To start, a simple working definition of PEM: it is a condition that emerges when 2/
somebody physically, mentally or emotionally exerts themselves beyond a certain point, causing a delayed worsening of symptoms that can last days, weeks or even months. NB: There is much more to PEM than this definition, and one of my favorite explainers is @LongCOVIDPhysio's 3/
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/
is probably selling that one drug/one approach. These illnesses are complex: Biomarker-driven, personalized dispensation of combination therapies are going to be crucial to addressing the problem. Let's talk through an example (an example that assumes a perfect world where we 3/