There are two camps within the long COVID patient community, and I've never really identified with either: The first is convinced that long COVID is the same thing as ME/CFS. They typically point to a particular meta analysis that shows somewhere around 45% of people with long COVID meet the diagnostic criteria for ME/CFS: pmc.ncbi.nlm.nih.gov/articles/PMC95…

1 in 5 Americans have had lingering symptoms from a COVID infection. Many people recover naturally after a few months, but others are sick for years. If this happens to you, don't expect to get any form of treatment from your doctor. Instead, you'll have to experiment yourself: Since there are no approved treatments, the way doctors approach it varies wildly. The most conservative doctors (likely the majority) will give you nothing at all, instead letting you suffer in pain and try to accept whatever is left of your life.

~1 in 5 Americans have had lingering symptoms following COVID. Often, they're mild and resolves quickly. Sometimes they are severe and last years, which is what happened to me. Unfortunately, if this happens to you, you are screwed. This is what it's like trying to get care: I'll start by saying that I have a lot of advantages 95%+ of people do not have, and despite these advantages, my experience seeking care has been terrible.

I think my most controversial take on COVID, and what I think nearly everyone in is getting wrong about this, is that it's a disease whose burden falls primarily on the young. Not the old. Conventional wisdom is that COVID is only something old people need to worry about. You see this in revisionist arguments over whether it was wise to close schools, or who should get vaccine booster shots. Or if young people needed to get vaccinated at all in the first place.

When people talk about the devastation from COVID, they usually cite the number of people who died (7 million, 20 million, 30 million) or the economic cost ($14 trillion, $35 trillion, etc) but this pales in comparison to the true cost, something most people do not understand or talk about: About 1 in 4 American adults have developed some type of long term health issues from their COVID infections. Data is limited, but it seems reasonable to assume this ratio is similar in other countries.

If you're someone who thought COVID was over and the vaccine saved the day, then the appointment of RFK Jr might come as a surprise or a shock to you. But it's what I expected - I've said for a long time I've assumed the COVID vaccines will eventually be banned in some areas. This is because COVID is not over. It's given about a quarter of the population a new chronic health condition, and with every reinfection, it gets a little worse. People know their own bodies, and understand that their health is in decline.

The idea that COVID ended is a mass delusion

https://twitter.com/brendengallager/status/1856459351306973611

People want it *so badly* but sorry, it's just not. Literally the only way you can think that is if you just don't look at the data. Which most people don't. Because they don't want to.

I've seen literally dozens of doctors for my long COVID symptoms. Most of them in California. In this thread, I'm going to list a few that I recommend. Hopefully, this is helpful for anyone struggling. Unfortunately, most of these folks do not take insurance, but you may be able to get reimbursed. I'm not going to include links because of the algorithm. if you're reading this, I assume you're intelligent enough to find these folks.

Few people take COVID seriously anymore. Part of this may be from experience - people got COVID a couple times, recovered, and think they're fine - but a lot can be blamed on the media. Here are some tactics the media continues to use to downplay COVID and mislead the public: Referring to it in the past tense. Most headlines will use the word "during" when referring to COVID, such as "during the pandemic".

1 in 37 Americans have COVID. This means that there are ~300K ppl who have COVID right now that will develop long COVID, just as I did. This is what it's like to get long COVID as a healthy young person, and what treatments are available when you have $$ and great insurance: I was diagnosed with long COVID shortly after my third COVID infection in early 2023. This is despite getting all the vaccines and all the boosters, and despite taking paxlovid. I was 33 years old, with no major health problems. Only time I saw a doctor was at my annual physical

COVID is surging again. If you're infected, you may develop long COVID, even if you're young and healthy, have had COVID before, or were vaccinated. This will come as a surprise to people, mostly because of a consistent campaign to downplay and discredit this disabling illness: This article from the New York Post blatantly and falsely declared that long COVID is "fake". Anyone who believes this dangerous lie might find themselves surprised when their next COVID infection disables them.

Catching COVID is extremely risky, even if you've been vaccinated. A new study puts the odds of developing long COVID, a major disease that can disable you for months, years, or the rest of your life, at 3.5% following infection. Compare that to some other "risky" activities: Base jumping, considered to be among the riskiest sports in the world, has a non-fatal accident rate of 0.4%. That makes catching covid as a vaccinated person about 9X riskier than base jumping.

The reason why I continue to post about COVID and long COVID is because I've seen it cause so much devastation in the lives of my family and friends. I sometimes wonder, am I just particularly unlucky? Or are most people in denial? Examples: My brother might have died from COVID. He died of pneumonia back in February 2020. No one was testing back then. And a few people who went to the funeral had COVID around that time.

The 1918 flu is called the "Spanish flu" because in most places, the media censored it. Except Spain, where they reported honestly. This isn't a conspiracy theory - it's a historical fact. And I think it is occurring right now again with COVID: This article in The New Republic - "How America’s Newspapers Covered Up a Pandemic" - provides an overview of what happened in 1918. In short, the media either avoided talking about the flu altogether, or they blamed something else for the damage the flu was causing.

I think it's increasingly likely that the COVID vaccines will eventually be banned or heavily restricted in some places. Here are some disturbing trends that have emerged this year: The UK has gradually reduced the share of their population eligible for a booster. Healthy adults are no longer eligible

I had a stellate ganglion block performed at Stanford 10 days ago for long COVID symptoms. I think it made some symptoms better, while other symptoms actually got worse: First, I would say that I know the block definitely went through, as I developer Horner's syndrome for about a day afterwards. I had read that if you don't develop it, it's possible the block wasn't performed correctly.

As the number of adults with long COVID has led to the labor shortage, the number of kids with long COVID has led to a student shortage. There's been plenty of coverage about "chronic absenteeism" in US schools. But this is not just an American problem. It is global: In the US, students have been missing class far more often in recent years. Some states are worse than others. In Alaska, about half of all students are missing 1 out of every 10 school days

Long COVID trials they should be running right now based on many anecdotal reports I've read from hundreds of people and some limited evidence: Low dose naltrexone (LDN). Many people have told me they've recovered completely after taking it for a few months. But everyone who told they recovered reports wildly different dosages.

Another data point came out recently that suggests many people (maybe even most people) will eventually develop some degree of long COVID in the future. This is something I've been concerned about for years, and is the entire reason I started writing. I'll explain: Given that immunity to COVID wanes rapidly, it is widely believed that people will have many COVID infections over the course of their lives. Some experts have put it at 1x/yr. I've personally had 4 infections in ~3 years, and many people I know have had at least 2 or 3 now.

So I said I was going to hire a personal trainer again and just sort of force myself to try to return to my previous athletic level, as a sort of experiment. Well, I hired the trainer and it turns out that he also, in fact, has long COVID. But he didn't know until we talked about it. I walked him through the issues I'd had over the last year. I explained all my heart symptoms. He had the exact same symptoms. Went through all the same tests, and found nothing. His doctors never even mentioned LC as a possibility.

Although the media is covering long COVID more often now, almost every article includes subtle propaganda techniques designed to minimize and mislead people about the risk. As you're reading any article on long COVID, see if you can spot these techniques: Noting the vaccination status of a specific person with long COVID if they were not vaccinated. If they were vaccinated and still developed long COVID, their vaccination status will not be mentioned. Reinforces the false idea that vaccinated people don't need to worry about LC