Thread by @jenbrea

This morning I received a DM from a cardiologist. It expresses, in his view, why when it comes to complex, chronic illness, most doctors “treat these patients like garbage.” THREAD 🧵

#LongCovid #mecfs #NEISvoid #POTS #medtwitter #COVID19

https://twitter.com/jenbrea/status/1470110176623562758?s=20

I share his words because even though we disabled people and people with chronic illness have known it in our bones and through direct, lived experience (many of us for years, many of us all our lives), I’ve never heard an MD share the truth with such unflinching bluntness.

And also because I want to understand why medicine and society at large are failing to recognize that we are in the midst of the single greatest, mass disabiling event in the HISTORY OF THE WORLD. I have to *hunt* to find MDs even talking about this.

DM printed in full, here, and threaded below, with permission: jenniferbrea.com/blog/2021/12/1…

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 #LongCovid. 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.