The question that everyone wants an answer to, "What are the chances that if I get COVID-19 I will also get Long Covid?" isn't one that has an answer. We are not going to get any sort of useful statistics about the prevalence rates of Long Covid, not for a long, long time, and maybe not ever.
Because two years into this thing, we still don't have a working definition of Long Covid. [...]
Second, I keep running into studies that use proxy concepts like, "any PCR-confirmed COVID-positive patient who was still experiencing any COVID symptoms three months after infection," which bears no resemblance to what anybody means by Long Covid. That definition includes, for instance, people who are basically fine except their sense of smell hasn't returned. Now, that's a pretty serious medical problem, and I don't mean to make light of it, but it's very much not the same as a triathlete who can no longer climb stairs. [...]
I'm horrified and fascinated by what's playing out in medical science around Long Covid because, well, because of a lot of things. For one thing, there's what I already, coming into this, knew about the pretty much complete failure of medicine and medical research to treat previous conditions like fibromyalgia and ME/CFS seriously, and even treat conditions like Lyme disease adequately seriously. I feel like these failures of medicine have been viewed, until the Pandemic, by the larger society as trivial edge cases. But now, now that everyone is aware that there is this hideous possibility that if you get COVID you might never get better, there's this dawning realization that post-viral conditions aren't quite so trivial or rare after all, and medical science's failure to address those conditions means we have much less information than we might like to have about this one -- and also less in the way of conceptual tools.
The First Epistemological Problem of Long Covid
Here, I'll excerpt my favorite* part:
For another, this particular epistemological problem is oh-so-familiar to me from my home turf: psychiatry. Y'all: this why the DSM-III happened. The neo-Kraepelineans were like, "Right, this is bullshit. There's no standardized definitions of any psychiatric disorder, so we have no idea if one researcher's paper on 'schizophrenia' has anything to do with the subject population of another researcher's paper on 'schizophrenia'. Scientific research into psychiatric disorders is absolutely hamstrung by this. So step one: we infiltrate and take over the DSM committee. Step two: we give every single disorder in the DSM a formal set of diagnostic criteria. That will solve it!" (Morgan Freeman voice-over: "That did not solve it.")**
Welcome to nosology, the branch of medical science – and philosophy – concerned with the classification and definition of diseases and other medical conditions.
Is it wrong to eat popcorn at a two-hundred car pile up? Nosology, and the history of philosophy and medicine attendent it, is my favorite blood sport. I am so deep into raptly amoral, "Please continue your petty bickering, I find it fascinating" land here, I don't even know how to find my way back.
By which I man: the part that makes a very insistent part of my brain want to put up a 40-foot fence around my property and install gun turrets and cameras
I have deeply enjoyed** reading Siderea's science posts since before the pandemic crested upon our shores, and I credit her with giving me enough heads up that 1) I did not feel the urge to wrap my head in tinfoil and start capering in the street when things turned out more or less the way I worried they would go, and 2) I bought extra flour and sugar and yeast and toilet paper in January 2020 so I was the person who had extra to give away to others.****
*** And by "enjoyed" I mean "experienced some grim amusement and appreciation while also experiencing the sensation one gets at the top of a roller coaster run by psychopaths."
**** Also I walked away from my office lease before it cost me more than a few thousand bucks and ate up my entire savings account, which was an incredible benefit to me but perhaps somewhat niche to "small sole-proprietor self-employed type folks."
Long Covid is, in fact, a real thing.
It doesn't seem to be a very good idea to lump it in with self-diagnosed fibromyalgia, or 'chronic Lyme disease' (as opposed to actual 'Lyme disease'), which actual doctors and scientists have discredited.
Both Post-Treatment Lyme Disease Syndrome (aka "chronic Lyme") and fibromyalgia can be diagnosed by a doctor, but only if the doctor belives the syndrome in question exists in the first place.
It appears you believe in Long Covid, and you seem to want other people to, but maybe claiming real syndromes are bullshit won't further your cause.
From my reading, in that article the actual doctors and scientists discredit dangerous quacks and labs not the syndromes.
The point is not that "Long COVID is just another manifestation of Doctor Google Syndrome." The point is that we have no meaningful way to study it or eventually make any kind of meaningful prediction about it because we can't even agree on what it is.
Having read Dr. John Sarno's books on back pain and considering all the stress imposed on people by the pandemic, Long COVID sounds like a psychosomatic disease. This doesn't mean that people imagine their symptoms, but that treating the condition will require looking at mental health.
Most members of the club you are trying to join are stuck up asshole doctors who have spent decades pooh poohing illnesses they don't understand and that weren't in their textbooks in medical school by labeling them as psychosomatic. Because that means it becomes Not Their Problem to treat. Are you sure you want to be a member?
The discussion seems to revolve around the question of "which humans deserve to exist?" and the crucial follow-up of "wouldn't it be terrible if we accommodate or help someone who might not completely deserve it?".
Also "but have they tried NOT being disabled?"
Virus triggers cytokine storm, leading to inflammation and organ damage, which by the sounds of things, we're slow to recover from. If you're unlucky, sounds like it can leave permanent issues.
I had post-COVID fatigue for over a year, but I'm thankfully much better. It sucked. My concentration is also fucked, but I suspect that's due to social media and working from home. But who knows. So many variables changed all at once.
It's going to take a long time for not just our bodies to recover, but society and our minds too.
Those of us with chronic health issues learn (slowly and with difficulty) that research medicine and clinical medicine get along about as well as North & South Korea.
Clinical medicine is all about playing 20 questions and then proclaiming your illness with Authority so you can receive Treatment. Health Care is not a bug hunt; your doctor is not examining you to learn anything new. "Unknonwn" is not an allowed diagnosis, but there are many diagnoses that quietly resolve into no useful treatment.
Research Medicine is all about doing A/B experiments for decades, and has a -negative- interest in individual cases (anecdotes are not data.)
Long COVID, CFS, fibrowhatever, Crohn's, and a few other wonderfully debilitating conditions are not only not understood, but actively fought against by clinical medicine because they are more or less untreatable within the rules of modern doctoring. Fortunately doctors don't like to see people suffer, so they break the rules and "try stuff." But it's a shitty shitty shitty place to be stuck in.
See also: stomach ulcers & the 2005 Nobel prize.
See also: couple/family/relationship problems, which psychiatry refuses to give any significant scope to in their Bible, because even though relational problems cause tremendous stress and grief and even interfere with or undermine treatment of all kinds of medical problems, psychiatrists don't know how to treat them within the rules of modern psychiatry. "If we don't allow you to label and bill for it, it doesn't exist, and we can just label individual people as 'noncompliant' or 'malingering'."