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As my COVID improved, I had more time to wonder (and worry) about LongCOVID — how will I know if I have it? And what are my long-term health risks now post-COVID? I'll share what I've learned, but unfortunately right now we still have WAY more questions than we have answers. 🧵
LongCOVID is really *any* symptom that started with COVID, lasting more than X period of time. (I mean, this is honestly how hard it is to get answers right now — we can't even agree on a timeframe. It's all just lumped in as "Long COVID."
Others want to call it PASC (Post-Acute Sequelae of SARS-CoV-2/COVID Infection), but I'll stick to LongCOVID since I think people know the latter better.
There tend to be a few buckets of LongCOVID symptoms—but again, they can kind of be anything. The ones I'm hearing the most about:
🙇♂️Neurocognitive: Confusion, memory problems
🥺Psychosocial: Anxiety, depression, fatigue, sleeping problems
(Yes, there's so many categories I'm hearing about it needs another tweet)
🧠Neuro: Sensation changes, headaches, dizziness, weakness
🫀🫁Cardiopulmonary: Palpitations, Chest Pain, Shortness of Breath, Exercise Intolerance
🦞🤧Dermatologic/Allergic: Rashes, Itching, Allergies
So it can be pretty much anything. And unfortunately, LongCOVID seems to be *quite* common. Many people who were completely "normal" pre-COVID are quite debilitated. Have had to quit their jobs. Are less independent. Need help with things they never needed help with before.
How common? Let's take a look at some massive high-quality studies. The BMJ has a "living review" (meaning it's updated repeatedly) that's quite good (also where I took that infographic above from) across 12 countries. There are a LOT of symptoms.
gh.bmj.com/content/6/9/e005427
JAMA also has a nice review as well, and they did a long of work grouping studies by "how long have symptoms lasted" to try to help clarify duration, which I loved. They included 250351 patients post-COVID, with symptoms lasting more than 4 weeks.
jamanetwork.com/journals/jamanetworkopen/fullarticle/2784918
In this review, they found over 50% of patients had *some* symptom (PASC), and the rate didn't seem to go down over time!
(To me this seems overly high; I know many people who have had COVID and are "fine," but I'm also not delving into every symptom of their life.)
Several found a correlation with older age and other comorbidities and LongCOVID. Female sex is often found as one of the strongest LongCOVID risks as well. (Interesting that males have a higher COVID mortality, but maybe females have higher rates of LongCOVID?)
Tons of questions remain unanswered:
*What's the cause? (Maybe immune system out of control?)
*What's the treatment?
*Is there less risk with Omicron?
*Can it be prevented?
Finally: I should also say that LongCOVID is not "just in people's heads." While many of the symptoms are subjective, there's objective evidence, too. Here's impaired lung function:
pubmed.ncbi.nlm.nih.gov/33262076/
I guess the final question that we still know nothing about: is this one disease or many? Are patient 1's headaches caused by the same thing that's causing patient 2's joint pains? Or patient 3's rash below his right eye? Or patient 4's memory problems?
My worry is that it's going to take us a long time to figure out all of these answers, and meanwhile a) more and more people continue to get infected with COVID and b) we have no systems in place in the US to support people with LongCOVID besides "disability."
LongCOVID often reminds me of another syndrome (a syndrome is a collection of signs and symptoms): post-concussion. We don't understand it, different people have different symptoms, it happens after an event, and while most people have it for a week some can have them for months.
And importantly that it's quite common (30-80% of people after a significant head injury) and we still don't really understand it.
ncbi.nlm.nih.gov/books/NBK534786/
There are neurologists and sports medicine physicians that specialize in post-concussion care, and we are starting to see centers across the country studying and supporting LongCOVID patients. But given the billions of COVID infections in the world... we'll need many more.
(As always this went much longer than I'd anticipated; I'll cover post-COVID health risks (diabetes, stroke, heart attack, kidney failure — you know, nothing serious) next time.)