A few people have sent me a study from the Netherlands (" Post-COVID-19 condition in individuals infected with SARS-CoV-2 in autumn 2023 in the Netherlands: a prospective cohort study with pre- and post-infection data") that claims to show that almost no one developed Long COVID during the fall wave of 2023.
Obviously, this doesn't align with anecdotes. At this point, I've dropped out of the Stanford Long COVID clinic, but when I went for my last appointment earlier this month, they told me that they're still getting a steady stream of new patients.
It's no surprise, then, that this study suffers from numerous methodological flaws. A few I found:
1. Their method of classifying someone as "uninfected" is deeply flawed. They used an antibody test that is known to lose its effectiveness quickly, or even give false negatives.
2. But their method of classifying someone as "infected" was even worse. They used self-reported at home tests. People who had asymptomatic cases (which can still give you Long COVID symptoms) or who chose not to test at all (something dangerous lunatic and FDA bureaucrat Vinay Prasad has advocated) wouldn't show up in their infected group.
These two things taken together mean that it's highly probable many people in their control group actually had COVID, and therefore, it's no surprise that if you compare the two groups, you don't see much difference.
3. You can actually see strong evidence for this directly in their data: Their "uninfected" participants had higher rates of headaches, sore throat, fever, runny nose, and abdominal pain compared to the COVID "infected" group. This flat out doesn't make any sense.
4. They more or less arbitrarily made up their own system for defining if someone had Long COVID. They used a questionnaire that had not been validated, and then created point scale cut off points more or less on a whim.
If you want to see how bad this methodology is, you can notice that some of the people in their "uninfected" control actually reported having Long COVID. Again, this doesn't make any sense.
5. The cohort they used is not a representative sample. They targeted older individuals (60-85). It's challenging to distinguish Long COVID in this group given their age.
6. To make their data work, they threw out participants who couldn't be matched. Of course, these participants tended to be younger, adding to the selection issues.
7. Their methodology required the patients regularly follow up. The study authors admit the people sickest with Long COVID would, naturally, be less likely to follow up (they could be bed-bound, housebound, living in a dark room, etc. not filling out surveys).
8. There were a bunch of weird little mathematical quirks they called out - lacking computation power to correct for repeat measurements. Inability to match groups by number of positive tests. Issues with the number and types of vaccines people took.
When anecdotes conflict with data, the anecdotes are usually right.
I know someone in a stroke recovery support group. Been hearing about a lot of young people who had a stroke during or after a COVID infection. This is why I get upset when people equate Long COVID to fatigue, PEM, or other similar symptoms. It's a form of minimization
Your trials that measure fatigue as the primary endpoint are a joke. Show me a trial that looks for a reduction in CVD events in the year after a COVID infection. We know the probability is elevated for a long time.
Also, I don't mean this to say your fatigue or your PEM doesn't matter or isn't disabling. If this is you, you are the person I am talking about. It's not like "there are heart attack people and there are fatigue people" - everyone with LC is at higher risk for CVD events
I'm at the point now where it's been well over 6 months since I've felt 95% recovered from Long COVID. But now I realize there's another aspect to this illness: The fear of reinfection. I understood intellectually that reinfections are dangerous, but
It doesn't really sink in fully until you're feeling like your old self for a while and realize on a very gut level that this isn't over and won't be over anytime in the foreseeable future.
When you're very sick, you only wish you could feel better. But then you feel better, and you realize your life just can't go back to the way it once was. You know too much.
Long COVID shares similarities with other chronic illnesses, and other post-viral syndromes, but on a society-wide basis it's more devastating because of how much more common it is:
I have a fairly large family and have known many friends, classmates, coworkers etc over the course of my life. Before COVID, I knew of exactly one person with Chronic Lyme, one person with fibromyalgia, and literally no one with ME/CFS, CIRS, GWI, etc.
But I now know about a dozen family members, friends, and coworkers that have or had some version of Long COVID. All people I knew for years before 2020. And I seem to hear of someone in my extended circle developing it at least every few months
Well, it's been about 4 months now since I've consistently felt 90-95% recovered from Long COVID.
A lot of people talk about what helped them recover, but here's some things that DIDN'T help me recover:
Reducing stress - the last 4 months have included some of the most stressful days of my life.
Back in May my wife suffered from 4 strokes. The surgeon woke me up in the middle of the night to tell me that she was about to die, and that they needed to do emergency brain surgery.
I spent the next few hours alone, completely stressed and terrified, wondering what I was going to say to my daughter if my wife died.
The evidence for Long COVID is simply overwhelming. There are now thousands of studies, validated biomarkers, reports and surveys from millions of people from virtually every country going back since the pandemic began. And yet, still widespread denial and gaslighting - why?
It's because the reality of the situation is far too horrible for most people to seriously contemplate. The best evidence says somewhere between 1 and 10 and 1 in 3 people suffer from Long COVID symptoms, at least in some form, including children.
These symptoms can and often are, completely disabling. While I often write about my own attempts at treatment, there are no formally approved treatments - there is no way to even reliably treat the symptoms.
I went to the Stanford Chronic Fatigue Syndrome Clinic today. If you're in California, and you have Long COVID, and you're unable or unwilling to pay for a private doctor, it's probably your best option for finding treatment:
My expectations going in were low based on some of the reviews people left on the helpforlongcovid website, but I was pleasantly surprised. They prescribe several treatments, order blood work, and were willing to work with me to try to get other treatments I'm curious about
I would contrast this with Long COVID clinics I've been to, including Stanford, which only offers a couple treatments, doesn't really care about blood work, and the appointments basically consist of a long interview with not much offered, as if they are just collecting data