“Most doctors have no repercussions for treating these patients like garbage“

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This weekend, I responded to Dr. Monica Gandhi’s New York Times op-ed, which argued for using hospitalizations (rather than cases) as a means for gauging what public health measures are appropriate to recommend or mandate to the public. There are a number of problems with this position, chief among them that hospitalizations are a lagging indicator of an outbreak. By the time your ER is flooded with new COVID cases, you are already weeks late in implementing restrictions that could have saved lives.

However, there is another major reason why cases help us to measure the true cost of the pandemic: Long COVID. Most patients who develop long COVID will never see the inside of a hospital during their acute infection. Long COVID can develop following “breakthrough infection” in the vaccinated and even asymptomatic infections.

So in response to Dr. Gandhi’s disastrous recommendation, I wrote the below tweet. I was also prompted by #MedTwitter’s near silence on the subject of COVID’s disabling effects, which will ultimately affect several orders of magnitude more people than it will kill. We are in the midst of the single greatest mass disabling event in the history of the world. Two years in, I thought the medical community would recognize what was unfolding and speak up on behalf of so many millions. By and large, they have not.

This morning, I received a direct message from a cardiologist, who asked to remain anonymous but gave me permission to share his message. (I have had a longstanding interest in post-viral illness after becoming ill in 2011/2012 following a severe viral infection. If you are interested in learning more see my film Unrest, which is available on Netflix.)

His message is the most clear-eyed, brutally honest perspective I have ever heard a physician articulate regarding why, in his words, most doctors face no repercussions if they “treat these patients like garbage.” I share this because I have always believed that truly solving problems requires seeing them clearly and truthfully.

While this is one doctor’s perspective, I hope this aids both patients and physicians in better understanding the callousness we are facing, perpetuated by both individuals and the systems of which they are a part.

From a cardiologist. Note: I’ve lightly edited the below for clarity.
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I had previously been treating a fair amount of POTS/CFS. They had previously been a marginalized community for a number of reasons. First, most doctors have absolutely no idea how to treat these conditions. They do not have standard pathologies and haven’t been taught them medical school. In fact they continue to not have a definitive pathology, but rather a collection of symptoms, called a syndrome. It requires a little faith to realize that it exists which is usually brought upon by seeing various patients in various walks of life who all have the same “syndrome”. You have to be incentivized to stop and really really listen to your patient. Which brings me to my next point.

Second, most doctors have no repercussions for treating these patients like garbage. These doctors don’t know the answer and don’t wanna waste their time. They know before they walk in the room that the encounter will be useless for all. The[y] rationalize being jerks. I’ve been there before. It occurs overwhelmingly when you have a doctor who is employed by a large conglomerate healthcare center for whom patients are obligated to see via HMO/network restrictions [editor’s note: HMOs in the US operate similarly to the UK’s NHS]. If the patient is treated poorly, the patient has absolutely no recourse. The doctor has a guaranteed stream of patients due to their employment and due to the insurance network trap. The incentive to either try, be nice, be civil, or just generally be a decent human being is gone. They simply want in-and-out of that room ASAP, without any concern for how it might impact their reputation. Because it doesn’t matter.

Being a private practice physician, my bias lies with private practice physicians. Not a single patient that I see has any obligation to ever come back and see me again. The only reason people come back to see me is because they have derived some benefit from seeing me. Call it corny, but market forces are actually in play. I am unable to function unless I deliver something.

Third, these patients take a great deal of time. The majority of the time is simply spent listening and understanding their symptoms. After that, helping them to understand the basis for the syndrome takes further time. In a fast world, people don’t like this. Once you get the hang of it however, you can derive a lot of satisfaction in helping people who had previously not been helped.

So now enter Long Covid. Most doctors simply don’t wanna deal with it. Those who have already been treating patients with more undefined syndromes are indeed treating Long Covid and doing the best they can with minimal information. There are some phenotypes of it that are very similar to pots/CFS. So you end up seeing several cardiologists and neurologists with decent size volumes of these patients. I’m just one.

So from my vantage point I can see that society at large is happy to ignore the death of 800,000 individual human beings. It means nothing to them if it interferes with their politics and worldview. So if we can’t even get empathy for the dead, how are we getting any empathy for people who have a dysautonomia to the extent that they can’t get out of bed, care for the children, or go to work? You can cite large numbers of these people which will be readily ignored by the masses of petulant children that refuse to take any of that seriously. You can cite individual anecdotes of people under duress, however their misery will simply be discounted by other petulant children who will intentionally miss the point. For crying out loud most doctors don’t even get it. The average Joe on the street basically thinks it’s a bunch of complainers. While I can assure you that it is not, and that they are indeed ill, society at large simply doesn’t believe it. More precisely, the anti-Covid cohort simply doesn’t believe it.

Those who are born with the gift of empathy are already on our side.

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A collection of images from protests around the world held in 2018 to raise awareness and demand change for patients living with myalgic encephalomyelitis (ME), also called chronic fatigue syndrome. 80% of cases follow a viral or bacterial infection. many patients with long covid meet criteria for Me/CFS and other syndromes that can occur after an infection, such as POTS, dysautonomia, or chronic lyme disease.

TOP LEFT: DOZENS wearing. Matching red t-shirts that read “millions missing’ lay down in a public square in the uk to represent the millions who are bedbound and cannot be visible in public spaces. Top right: protestors in new york wear blue veils and hold mock gravestones to represent patients who cannot be present. Bottom left: red umbrellas layed out on a patch of grass in a public square spell out “millions missing.” Bottom center: allies hold up a blue and weight sign in a packed soccer stadium (text in german). bottom right: an artist with me has composed herself to be completely engulfed by pill bottles, holding a sign to represent what she is missing in her life. The sign reads, “Hiking with my kids, dancing, my brother.”