How to Deal with Long COVID: Of Science and Sense, Today and Tomorrow
Why the vituperations? Well, integrative medicine refers to the blending of conventional and unconventional (aka, complementary and alternative) medical practices in patient care, and those with extreme fealty to the conventions of their turf tend to disdain the turf of others. It tends to work both ways: the staunchly conventional see the practitioners of all else as hucksters and quacks, the staunchly alternative see the rigid conventionalists (aka, allopaths) as pill pushers.
Both, of course, both are wrong. There is, inevitably, dirty bathwater wherever humans are striving for the care of a pristine “baby” of good works; and there is, generally, a baby in the mix to account for dirty bathwater. There is no field of human endeavor I have ever encountered that is just the one and none of the other.
As a board-certified Internist, I have abundant cause to celebrate the prowess of modern, conventional medicine– but I also have an insider’s view of its misguided traditions, pedantry, dogma, and frequent if (generally) inadvertent harms. As for alternative medicine in the aggregate, it is a vast domain that runs the gamut from preposterous nonsense, to safer, gentler, and highly effective treatments. My colleagues and I have actually studied, and mapped that gamut.
I migrated to Integrative Medicine for one reason and one reason only: human need tends to go on long after textbook passages and the results of RCTs run out. I am a card-carrying member of the evidence-based-medicine club, having taught clinical epidemiology and biostatistics to Yale medical students for nearly a decade, and authoring a textbook on the topic. But I believe there is a need to respect evidence and remain responsive to the needs of patients when the better varieties of evidence have run out.
Striving to do this in practice – balance respect for science and responsiveness while dealing with especially hard-to-treat patients who had tried everything conventional medicine sanctioned without success – my colleagues and I developed, and published (see Table 2) a construct called CARE: clinical applications of research evidence. In a nut shell, we argued that evidence is not a light switch, on or off, but rather encompasses a range of relevant considerations: is a treatment known to be safe, or not? Is there evidence of therapeutic benefit, or not? Is the science absent, scanty, abundant, or murky? Is there an alternative, better substantiated treatment for the job that hasn’t been tried yet, yes or no? And: does the patient want it?
Consider the extremes: bad science, unsafe, probably ineffective, there are many likely better alternatives, and the patient has no clear preference. Saying “no” in this situation is a no-brainer. So is saying “yes” when a treatment has strong supporting science, is clearly very safe, is highly effective, there are no good alternatives to it, and the patient desperately wants you to “do something!”
The trouble, of course, is in the middle: murky science, probably safe, might be effective. Here, the matter comes down to alternatives, and patient preference. If there is something “better” the patient will accept, that should come first. But if there is nothing better, then…this becomes the next best thing to try. Navigation through the fog of clinical uncertainty is the “art” part of medicine. It comes down to judgment, doing the best we can with what we’ve got- when what we’ve got is no longer the neatly scripted marching orders of a textbook.
There is an important aphorism that nicely accompanies these reflections: absence of evidence is not evidence of absence. In other words, before we know that something does or doesn’t work, we will have cause to wonder about it. A study is never done BEFORE sense, experience, and observation suggest a potential benefit; studies are done afterward. Sense and intuition lead, science follows.
But in the realm of alternative and natural treatments, high-quality studies may not be done at all, because funding for them is extremely elusive. Drugs and devices are routinely patented, and vast fortunes fuel pharmaceutical and device research, because vast fortunes ensue when these are applied. But there are no patents for massage, or Tai Chi, or meditation, or most supplements- and thus, lack of cash leads to lack of research. Many looking at all of this from altitude have wryly noted we do not, really, have evidence-based medicine; we have profit-based medicine, since profits dictate what evidence we pursue, and generate.
What this means is that much of what should be studied has not been yet, and in some cases, may never be. It also means that what will be studied, and proven effective or ineffective some time in the future, may be subject only to informed conjecture today. But if you are a patient in pain today, then today matters. Tomorrow, and tomorrow, and tomorrow…are just too far off. Medicine is obligated to do the best it can, today, for every patient- based on what it knows, and despite what it does not know, today.
Exactly that is true of long-haul COVID, or PASC: post-acute effects of SARS-CoV-2. The condition is real and prevalent right now, but we do not yet have mature science to offer treatment guidance. CDC has provided some rather general and vague guidance. Far more specific treatment protocols are available courtesy of the Front Line COVID-19 Critical Care Alliance. These recommendations reflect an aggregation of judgment, informed opinion, clinical experience, and some rather inchoate research. If we had evidence ready for primetime, in the form of RCTs and meta-analysis, this would all just be standard of practice; it is not.
I have long-haul COVID, and I am not following any elaborate treatment protocol. I am sticking with my usual commitments to eat optimally, exercise daily (although on bad days, I have to force myself), get enough sleep, and manage stress. My short list of supplements- vitamin D, probiotic, omega-3, whole plant-food concentrates- remains as it was. I am counting on tincture of time- a powerful therapeutic that often fails to get the respect it deserves. The body has remarkable healing capacity- so just taking very good care of it with lifestyle, and giving it time to take care of itself, is among the greatest of all remedies. But I can afford this luxury because my case is mild, and I am improving. Were my symptoms more severe, I might not tolerate the wait. And, there is no guarantee about the prize for waiting. Time can work wonders, but sometimes- things stay the same, or get worse rather than better.
My advice to you issues from this. If you have mild symptoms and a trend toward improvement, use lifestyle as medicine and time as your intervention. Your body, if you nurture it, is capable of remarkable recovery; I have been privileged to bear witness many times over my career.
If your symptoms are severe, or your trend is unfavorable – static, or deteriorating- see your doctor with the FLCCC recommendations and the CARE construct in hand- and insist on some careful, compassionate creativity. Sense leads, while science follows to verify or refute. Sometimes, the best we can do is trust in sensible judgments predicated on very incomplete evidence.
I have two related hopes. The first is that the field of medicine will recognize, and respect, that many other pathogens also induce long-haul syndromes. The regrettable tendency has been to blame the victims, but with SARS-CoV-2 conferring obvious legitimacy, that may at last change. The second is that all health professionals reliably differentiate between evidence of absence- which is, indeed, a reason to demur- and absence of evidence, which only tells us: we don’t know for sure yet.
All too often care, today, must prevail over gaps in evidence and knowledge to be filled only tomorrow, and tomorrow, and tomorrow. You deserve the best today can offer; carpe diem.
This article was first published on LinkedIn.
Dr. David L. Katz is a board-certified specialist in Preventive Medicine/Public Health
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