Thursday, March 2, 2023

Understanding Long Covid

A couple days ago, Martin Kulldorff, a Swedish biostatistician, was at a White House roundtable discussing Covid when he said, 

"We knew about [infection-acquired immunity] since 430 BC, since the Athenian plague until 2020. Then we didn't know about it for three years, and now we know again."

Many classicists online jumped all over that for two reasons: The first, that the Athenian plague virus was one and done, closer to Ebola than a Coronavirus. People didn't seem to get it twice, so getting it once was protective IFF you survived that one case. 

The second issue is that 25% of people died from it within three years, including Pericles, their leader.

(For context, Socrates was about 40 at the time, and Plato was born just after it had run its course. At the end of this post, I included Thucydide's record of the time for a terrifying comparison to our current situation.) 

On the same day as the roundtable, an episode of The Agenda discussed how we should understand Long Covid in order to best address this healthcare crisis, and nobody advised getting it in order to avoid getting it. Guests included Dr. Fahad Razak, the former scientific director of Ontario's Covid-19 Science Advisory Table, Internist at St. Michael's Hospital, and Associate Professor at the University of Toronto, Dr. Raywat Deonandan, Epidemiologist and Professor in the Faculty of Health Sciences at the University of Ottawa, and Dr. Jennifer Frontera, Professor of Neurology at NYU Grossman School of Medicine, and of the World Health Organization brain health neurology and Covid-19 forum. They were all more or less on the same page, so this brief summary of the video doesn't clarify who said what:


The Agenda panel discussed the scale of the disease and the billions in lost wages caused by ongoing illnesses. In one study, 12 months after initial diagnosis, half of the patients weren't well enough to return to their prior employment. U.S. numbers are worse because Canada had tighter restrictions sooner. There are a ton of symptoms that people are experiencing for months or years after getting sick including abnormal blood clots (which can lead to strokes or heart attacks), autoimmune issues, scarred organs, and brain inflammation leading to intense fatigue or brain fog. People have trouble eating, trouble standing or moving, and trouble thinking. Once it starts, it can spread to all areas of the body. People have moved on, but the virus hasn't, and more people have died of it in 2022 in Ontario than in 2021 or 2020. 


There's no consensus on how to diagnosis it yet, so some doctors are trying to address symptoms without understanding the full effects of the disease. There's no blood test or anything simple that can be used, so we need meticulous information gathering by a primary care physician, but 5 million Canadians don't have access to one! We have a family doctor shortage at the same time that we need intake appointments to be significantly longer in order to get a full sense of each individual's symptoms. Doctors need specific billing codes that will enable longer visits, the way they have billing codes for chronic fatigue.

Quotation from this NY Times article.

BUT a broad definition of Long Covid can hide a host of problems. It conceals the mechanisms of the disease. Approaching it by symptoms doesn't allow for a nuanced approach that could be found if it were clearly sub-divided. They discussed the comparison to cancer - that we know there's a huge difference between a mole that needs to be removed and pancreatic cancer, so we're less likely to refer to cancer in general terms. 

[Aside: It's interesting that it was at least 20 years ago that the late oncologist, Dr. Robert Buckman, actually implored people to stop talking about cancer generally, and he compared it to using the term infection to mean having a pimple or AIDS, which nobody would do: We need to apply that specificity to cancer discussions always including the location, spreading potential, and the stage. And so it is with Covid.] 

The other analogy raised is to smoking, and treating those symptoms individually: advising a patient to see a dentist for teeth staining, and a dermatologist for dry skin, and a pulmonologist for chronic coughing, etc., which completely misses the underlying cause. We need different treatments for different parts of the body because we're still treating symptoms instead of the cause. People are just getting headache medication for headaches plus an inhaler for shortness of breath without looking at the underlying microclots that could be causing both problems. 

We need Long Covid clinics to be able to look at the disease from an interdisciplinary perspective, with specialists all in the same building, and they might take just a few months to set up in a few urban areas. We need to do what the National Cancer Institute did, to pull all these threads together into one international institution. 

We also need to sub-divide the term for research purposes. We can't design a research study on post-Covid headaches and include patients with post-Covid brain fog because it will underpower the study. 

One way to divide it is by three clusters of symptoms: pulmonary, neurological, or multiple. About 15% of people are in that third category with up to 17 different symptoms, and they respond differently to treatments, so we need to look holistically at everything at once. We also need to reinvest in medical school education to make sure this condition is taught to every new doctor. Most doctors don't get enough training on viral illnesses, and now it's absolutely essential. 

They all also agree that there are very few treatment options at this point, and we need far more money to go to researching cures. Vaccination studies have shown that keeping up-to-date on boosters does reduce the likelihood of getting Long Covid by 15%. Mucosal (intra-nasal) vaccines are possibly going to be more preventable, but they're not discussed enough in the media. We need more investment in research to allow further testing, but funding is drying up. We need to hear more voices of those with Long Covid and their families in order to continue this important work. We have nowhere close to the financial investment needed to tackle the growing number of people with this condition. There a gap between people who need care and the care available.

But there is one thing that definitely helps, which is to never get Covid or get it as few times as possible. We have to put a much bigger effort into preventing this potentially life-long illness by cleaining the air (ventilation/filtration) and wearing masks in public places.


And if you do get it, track all your symptoms (fever, blood pressure, blood oxygen levels, eating, sleeping, and fatigue levels, etc.) to get your own holistic sense of what's happening in your body on a daily basis, in writing, knowing that it could be 6-12 months to get into a clinic for specific care. Because of a lack of care, more people are going online to search for solutions, so be careful to try to find research behind any treatment you want to follow. Here's research I've collected so far on prevention and treating acute symptoms, and various studies on Long Covid.

This is where we're at right now - medical professions cautioning people how to help themselves instead of the typical admonishment to ask your family doctor. That's no longer a realistic option.

Check out a tiny portion of Thucydides's description of the Athenian plague for some light reading (bolded emphasis is mine):

"But while the nature of the distemper was such as to baffle all description, and its attacks almost too grievous for human nature to endure, it was still in the following circumstance that its difference from all ordinary disorders was most clearly shown. All the birds and beasts that prey upon human bodies, either abstained from touching them (though there were many lying unburied), or died after tasting them. In proof of this, it was noticed that birds of this kind actually disappeared; they were not about the bodies, or indeed to be seen at all. But of course the effects which I have mentioned could best be studied in a domestic animal like the dog. 

Such then, if we pass over the varieties of particular cases which were many and peculiar, were the general features of the distemper. Meanwhile the town enjoyed an immunity from all the ordinary disorders; or if any case occurred, it ended in this. Some died in neglect, others in the midst of every attention. No remedy was found that could be used as a specific; for what did good in one case, did harm in another. Strong and weak constitutions proved equally incapable of resistance, all alike being swept away, although dieted with the utmost precaution. By far the most terrible feature in the malady was the dejection which ensued when any one felt himself sickening, for the despair into which they instantly fell took away their power of resistance, and left them a much easier prey to the disorder; besides which, there was the awful spectacle of men dying like sheep, through having caught the infection in nursing each other. This caused the greatest mortality. On the one hand, if they were afraid to visit each other, they perished from neglect; indeed many houses were emptied of their inmates for want of a nurse: on the other, if they ventured to do so, death was the consequence. This was especially the case with such as made any pretensions to goodness: honour made them unsparing of themselves in their attendance in their friends’ houses, where even the members of the family were at last worn out by the moans of the dying, and succumbed to the force of the disaster. Yet it was with those who had recovered from the disease that the sick and the dying found most compassion. These knew what it was from experience, and had now no fear for themselves; for the same man was never attacked twice. And such persons not only received the congratulations of others, but themselves also, in the elation of the moment, half entertained the vain hope that they were for the future safe from any disease whatsoever. 

An aggravation of the existing calamity was the influx from the country into the city, and this was especially felt by the new arrivals. As there were no houses to receive them, they had to be lodged at the hot season of the year in stifling cabins, where the mortality raged without restraint. The bodies of dying men lay one upon another, and half-dead creatures reeled about the streets and gathered round all the fountains in their longing for water. The sacred places also in which they had quartered themselves were full of corpses of persons that had died there, just as they were; for as the disaster passed all bounds, men, not knowing what was to become of them, became utterly careless of everything, whether sacred or profane. All the burial rites before in use were entirely upset, and they buried the bodies as best they could. Many from want of the proper appliances, through so many of their friends having died already, had recourse to the most shameless sepultures: sometimes getting the start of those who had raised a pile, they threw their own dead body upon the stranger’s pyre and ignited it; sometimes they tossed the corpse which they were carrying on the top of another that was burning, and so went off. 

Nor was this the only form of lawless extravagance which owed its origin to the plague. Men now coolly ventured on what they had formerly done in a corner, and not just as they pleased, seeing the rapid transitions produced by persons in prosperity suddenly dying and those who before had nothing succeeding to their property. So they resolved to spend quickly and enjoy themselves, regarding their lives and riches as alike things of a day. Perseverance in what men called honour was popular with none, it was so uncertain whether they would be spared to attain the object; but it was settled that present enjoyment, and all that contributed to it, was both honourable and useful. Fear of gods or law of man there was none to restrain them. As for the first, they judged it to be just the same whether they worshipped them or not, as they saw all alike perishing; and for the last, no one expected to live to be brought to trial for his offences, but each felt that a far severer sentence had been already passed upon them all and hung ever over their heads, and before this felt it was only reasonable to enjoy life a little."

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