Poppins - pauline M.

People with Long COVID often receive one or several of the following diagnoses, sometimes in addition to, or instead of, Long COVID: -POTS -Chronic Lyme/Tick-borne infection -Mold illness/CIRS -ME/CFS -hEDS -MCAS -Fibromylagia -Vaccine injury -Many more What do all of these conditions have in common? They are poorly understood, poorly defined, poorly researched, and have no widely available tests or objective biomarkers that can be used to screen people. The symptoms are vague and heavily overlap with one another. So, with enough creativity, almost anyone can be made to fit the diagnostic criteria for any of these. (Now I know there are Lyme tests, but people dispute the validity of those. Same thing for MCAS and CIRS. POTS has a til-table, but those aren't widely available, and even then, sometimes people with POTS symptoms pass those. ME/CFS has the 2-day cpet, but no one actually does that, etc. in practice, diagnoses are just handed out based on an interview.) If you have strep throat, any doctor on the planet can swab your throat, culture it, and give you a strep throat diagnosis. But for these illnesses, it doesn't work that way. Instead, the factors that determine your diagnosis are things like: -Where you live -What doctor you see -What kind of doctor you see -What your political beliefs are -What story you are willing to tell yourself and others about the nature of your illness People who are sick and are seeking care, often cycle through these diagnosis pursuing different treatment protocols in an attempt to heal. "Oh, perhaps I have Lyme, I'll try this." When that doesn't work, they move to "maybe my house is actually infested with mold, I'll try that," and then they go "on turns out I have hEDS, I'll try these vitamins," and they go on and on for years, sometimes decades, in this cycle. It's very sad. These people are being completely screwed and left behind by mainstream medicine, which has its own basket of vague diagnoses it likes to hand out to these folks (FND, anxiety, depression). In other words, medical gaslighting. Tell the person there's nothing wrong with them; they're just crazy. But from a macro level, the issue with this system is that it is vulnerable to abuse and exploitation from people in power, and from social pressure and social conditioning. If anyone can basically receive any of these diagnoses, then people can be moved intentionally from one bucket to another, or they will be pressured to voluntarily move. I can't tell someone with cancer that they should instead identify as having diabetes, but I can convince someone with Long COVID that what they actually have is a vaccine injury. Now imagine you're a society that doesn't want to grapple with the consequences of the pandemic. The very term "long COVID" invokes the failures of the last 6 years. None of these other illnesses - ME/CFS, POTS, CIRS, etc. - do that. There's no one to blame for POTS. There's no government official to hold accountable for ME/CFS. There's no specific decision or specific statement by a specific person that anyone can point to as the reason they have CIRS. How convenient. This creates massive incentives for Long COVID to be absorbed into the broader chronic illness constellation. It means no one needs to be held responsible for letting the pandemic rip. No one has to be held accountable for the growing number of disabled people. And that's exactly what we're seeing now, in real time. The use of acronyms like IACC and PAIS in the media. People self-censoring by describing their illness as POTS rather than Long COVID. The NIH listing Long COVID as just one among several of these illnesses it's committed to studying. Groups bucketing patients from all these different illnesses into the same trials, and then using subjective endpoints so you can't tell them apart. If they get their wish, then in another year or two, there won't be any Long COVID anymore. There will just be people with ME/CFS, people with POTS, people with Chronic Lyme, etc. How do we stop this? We push for real science with real biomarkers. Figure out what's actually going on in people's bodies, and segment them into the right groups based on that. This will have the benefit of keeping the reality of the ongoing pandemic alive, and it will also ensure that we can actually find proper treatments for people.