3 ms·

> I honestly don't find the label useful, I would say I am getting increasingly annoyed by it. The exact same thing is happening to Long COVID: A small number

> I honestly don't find the label useful, I would say I am getting increasingly annoyed by it. The exact same thing is happening to Long COVID: A small number of people are truly devastated by post-COVID issues that can last for years (or more, we don’t know yet). A much larger number of people have some milder post-COVID issues that can linger for months or longer, but don’t otherwise wreck their life. The problem is that both groups are being lumped into the “Long COVID” description, which is a huge disservice to those severely debilitated by post-COVID issues. It’s getting so bad that a lot of people don’t believe Long COVID can be a serious issue because everyone they’ve seen with “Long COVID” has relatively mild symptoms and they’re just not seeing the more rare Long COVID sufferers who have serious issues. We really need to stop lumping mild and serious conditions under the same label

thewebcount 4y ago
> A small number of people are truly devastated by post-COVID issues that can last for years (or more, we don’t know yet). I would argue that we do know, but that the instances of it are so stigmatized that doctors and the media are blind to it. Other diseases like POTS, MCAS, & EDS seem to have a lot in common with long COVID and look to me to be basically the same thing triggered by a different virus. My spouse has suffered from them for about 12-15 years now. It's particularly infuriating because there are even clinics set up for studying and treating long COVID for all the symptoms she has, but she isn't allowed in them because she's never had COVID. Hers definitely appears to have started after getting mono as a teenager. She was hit really hard, but after about 6 months was back to normal. Then in her late 30s it hit her and now she can't work or do much of anything. When she stands up, her heart rate can go up to 130bmp just standing and doing nothing. She starts to white out, but unlike some doesn't actually pass out, which may actually be worse. It's actually kind of a relief to have a large group of people very visibly get the same symptoms in a way that makes it much harder to dismiss as anxiety or depression. Hopefully if anything good comes out of COVID it will be that long COVID-like diseases will be studied and better understood.

thewebcount 4y ago

> A small number of people are truly devastated by post-COVID issues that can last for years (or more, we don’t know yet). I would argue that we do know, but that the instances of it are so stigmatized that doctors and the media are blind to it. Other diseases like POTS, MCAS, & EDS seem to have a lot in common with long COVID and look to me to be basically the same thing triggered by a different virus. My spouse has suffered from them for about 12-15 years now. It's particularly infuriating because there are even clinics set up for studying and treating long COVID for all the symptoms she has, but she isn't allowed in them because she's never had COVID. Hers definitely appears to have started after getting mono as a teenager. She was hit really hard, but after about 6 months was back to normal. Then in her late 30s it hit her and now she can't work or do much of anything. When she stands up, her heart rate can go up to 130bmp just standing and doing nothing. She starts to white out, but unlike some doesn't actually pass out, which may actually be worse. It's actually kind of a relief to have a large group of people very visibly get the same symptoms in a way that makes it much harder to dismiss as anxiety or depression. Hopefully if anything good comes out of COVID it will be that long COVID-like diseases will be studied and better understood.