Are Con Artists Coming for COVID-19 Long-Haulers?

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For a long time now (and that’s long in quarantine terms: a few months, which feel like approximately 42 years) the American public has thought of COVID-19 in these terms, more or less: some people who get it will die, but most people who get it will have what feels like the flu for a few weeks and then be fine. But with any new disease, there’s always going to be this question that will remain unanswerable for awhile: what are the long-term consequences?

Well, since the first cases were reported in December, we’ve now has 8 or 9 months to see what the (relatively short-term) consequences are, and it’s not good. Over at the Atlantic, Ed Yong has submitted yet another characteristically excellent report on the pandemic, this time focusing on so-called “long-haulers.” These are the people who were infected with a “mild” case of COVID-19, recovered with or without admission to the hospital, and thought they were in the clear until they started experiencing a collection of fucked-up symptoms.

Most of them are women with no pre-existing conditions with an average age of 44. The symptoms are often things that indicate a disruption of the automatic autonomic nervous system, something I may now very slightly disrupt in you by pointing out the things your body usually does without you thinking about them: breathing at regular intervals and with heavy enough breaths to get the oxygen you need, for instance; blinking at regular intervals; figuring out what to do with your tongue when you’re not using it…okay, and now that I’ve annoyed you into breathing and blinking weirdly while your tongue moves all around your mouth, I’ll mention that this also includes regular heartbeats and food digestion. So fucking with the automatic autonomic nervous system can be truly awful — your heart races for no reason, your blood pressure spikes, you’re nauseated or have other digestive problems. You get exhausted doing simple tasks. Your blood oxygen level is out of whack. It’s a big list of seemingly unrelated things that all have a similar source, and it looks like that’s what COVID-19 may be doing for months (or longer) to a certain number of people who have it and “recover.”

What percentage of people? Well, we don’t know because of how royally the United States and other countries have fucked this all up. For example, many Americans had symptoms of COVID-19 back in March but were unable to get tested. If they even had healthcare, their doctors told them to just stay home. Tests weren’t available and the system was already stressed, so why bother confirming something that the doctor could tell was probably COVID-19? Come on in if you feel out of breath or symptoms get worse. Otherwise you’ll be fine in two weeks.

But that means that we had a huge number of people who had COVID-19 but have no hard “proof” in the form of a positive test. So when they started experiencing all these awful symptoms months later, they were tested, found to be negative, and told they were imagining things. Even the antibody tests were failing to show evidence they had been infected — as we now know, many of those tests are unreliable, and antibodies can begin to decrease after a few months.

So there are hundreds, maybe thousands of people around the world, particularly those in the United States and developing nations, who have fallen through the cracks. They are now dealing with a chronic condition that isn’t well-researched, and they struggle to access proper care from a skeptical world.

Yong describes doctors who are making headway on treating the lingering symptoms of long-haulers, and so there’s certainly hope that the condition is being studied and treated more as this pandemic drags on. But there’s one thing he doesn’t talk about, and it has me extremely worried: the parallels to other conditions that are either poorly understood or are most likely completely fictitious. In the latter category, I’m thinking of “chronic Lyme.”

I’ve talked about chronic Lyme before, and each time I get flooded with true believers who are desperate to maintain the delusion that the tens of thousands of dollars they’re paying their “doctors” is worth it. In reality, these are victims who have been fleeced. They have a lot of the same symptoms researchers describe seeing in COVID-19 patients: exhaustion, trouble breathing, a mishmash of things that could be a single underlying disorder, a collection of conditions, or the physical and psychological effects of living an increasingly stressful and unhealthy life.

That type of condition is one that can easily turn a person into a victim: doctors don’t believe you, they say you just have anxiety, they say you don’t have a positive test for anything they know to look for, so they send you on your way. As a result, you turn to anyone who will listen, who says they do have a cure.

This actually happened to me years ago, before I became a capital-S-Skeptic. I went to a doctor complaining of something, and she was stumped. She suggested I see a naturopath. I did, and the naturopath was sure he had the solution in the form of some weird herbs. I took them. Did they help? Maybe? It’s honestly hard to say because the problem I was having was just as likely to be in my head, and having someone listen to me and tell me he knew what was wrong made me feel a million times better.

That’s one big reason I wanted to make a video pointing you to Yong’s article, and to the other stories now surfacing of long-haulers. Because on the one hand yes, this is important to know to stop what has become a dangerous talking point — that we can just let everyone get infected to achieve “herd immunity” because 98% of people will be just fine. We do not know that, even in “mild” cases that don’t require hospitalizations. 

But also I want to highlight this story because we need for medical professionals (and society as a whole) to know that research is confirming that COVID-19 long haulers have a very real condition that requires treatment. Because if the majority of people think they’re crazy, and if we deny them access to real medical care because of a lack of a positive test result or antibody test, then we are going to push a lot of people into the waiting arms of a new generation of quacks looking to make a quick buck at the expense of sick people.

Rebecca Watson

Rebecca is a writer, speaker, YouTube personality, and unrepentant science nerd. In addition to founding and continuing to run Skepchick, she hosts Quiz-o-Tron, a monthly science-themed quiz show and podcast that pits comedians against nerds. There is an asteroid named in her honor. Twitter @rebeccawatson Mastodon Instagram @actuallyrebeccawatson TikTok @actuallyrebeccawatson YouTube @rebeccawatson BlueSky

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