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Precisely what happened to me. Doctor botched the disgnosis, my department in local government did everything in their power to push me out immediately upon sharing an honest assesment of how I was feeling, asserting that I was voluntarily resigning rather than genuinely ill - which came across as retaliation for some of them having to return to the office in my stead, as prior to catching covid-19 and suffering the above effects I had been the sole volunteer to work from the office and liase with the public on everyone elses behalf. There wasn’t much if any info about ling covid at the time, and HR ignored emails sent over the next year as I tried to apologize for my illness and communicate what it clearly turned out to be.

Completely healthy now, but passed over after every first interview no matter what I do or do not share about what lead me to leave the previous role. If you had to leave work, do you have any suggestions as to how I may come accross as employable again?

I didn't write the parent comment, but I'd note that being unemployable is a great reason to start your own business, and if you do it right you'll never need to answer to anybody again. (Besides customers, that is, but customers are usually a lot friendlier than HR departments.)

Another option would be to pick up freelance work. This can often lead to fulltime employment, particularly when a company hires you for a short gig and you impress them.

People generally see work because they need money, and meanwhile a business is one of the biggest money sinks when starting out. I don't really understand why people suggest this as general advice. If you're not already extremely experienced and established in your field, or if you don't have years of savings to live off, I can't imagine starting a business impromptu going well. You need a plan.

I was not working at the time I got sick (for unrelated, voluntary reasons), and ended up having a 2 year gap, at which point when returning and interviewing I essentially told people during interviews that I was “taking care of a sick family member” during my gap period, implying that this was the primary purpose of my gap. I left out that the sick family member happened to be myself. All the responses I got were understanding and no one ever pressed further.

Don't mention health issues in an interview, ever. It's unfortunate and really should be illegal to discriminate (not to mention passing up on people who have learned a lot of resilience traits and recovered function) but it's pretty much the kiss of death to mention any kind of sickness or chronic issue.

Yeah. But because it’s not explicitly illegal it is a very easy rejection from the employer. A chronic illness is zero upside and only downside from the employers perspective, so if they aren’t legally obligated to ignore it it’s a very easy no from their perspective. So as the candidate there is basically no reason to ever share that information up front because all it will do is get you basically instantly rejected

I strongly urge anyone dealing with these issues to look into the gut biome as a source of clues and experimentation. A lot is not known about the gut biome but we're discovering many autoimmune and autoimmune-like conditions are related to it.

Some things to do: get biome tests regularly, go on an elimination diet, find the right supplements, join various LC/mecfs communities doing this work.

The short answer is the medical system really doesn't know what to do here and if you're dealing w this stuff you have to take it into your own hands and familiarize yourself with the areas the medical system doesn't focus on.

I am dealing with brand-new-to-me gut problems this year (I'm overall a fairly fit and healthy guy) and I now completely understand why people seek all kinds of zany alternative pseudoscientific treatments: we have next to no idea what we're doing when it comes to gut health and wellness, and the personal impact can be enormous. I am fortunately able to continue working, but many or most people are not so fortunate and truly struggle, and financial and personal difficulties can hit fast and hard when you can't function the way you need to. So many people in the United States are desperate and have so few options. Our health and employment problems in this country are not just a tragedy but a crisis that has been growing for many years.

So sorry to hear the way this affected you. My wife had/has long covid - as I listened to people she met online with LC and a couple of people we knew already, what fascinated me was the 'menu' of symptoms that people got and just how different they could be, though overlapping.

She too had the POTS and range of aches and issues. While she's largely recovered now, she still has to pace herself.

Really hoping this is better understood in the future, and that we are better able to treat people with it.

I’m basically 100% fine now, but thanks. I just wish I could have told the me that existed right when I started having this happen that it would eventually get better. At the time it was very scary thinking that I might have to deal with POTS or shortness of breath for the rest of my life or that my organs were permanently damaged in some way.

I find myself more fortunate than most in that I never really had the fatigue and brain fog issues that plagued and possibly still plague many others. I could definitely see those things being quite detrimental to my mental health in the long term if I had them.

Totally this - am many times as I said 'you will get better from this' - we both knew that was just a hope.

She's so much better now, and getting rid of POTS symptoms was a massive turning point for her, esp as we kept being told that no one recovers from POTS.

And yes, a friend of mine (male model in his 30s) who also had LC, could cycle for hours (no physical fatigue), but mental tasks totally wiped him out.

Several of these (Reynauds, food/digestion issues) sound like things that my family member dealt with after long-something-else. He was bedridden for nearly 2 years, diagnosed with CFS, and then (many years later) Lupus.

This comment just reinforces my belief that it’s autoimmune related. I have never had Reynauds (or ANY of these symptoms) before or after this. It was the first and only time I have ever seen any of the things I mentioned happen to my body. They just… went away and I was normal again eventually, luckily for me. Many aren’t so lucky

My wife got POTS for the first time in 2022, but we tested and tested and tested, we both never got Covid - but I have been suspecting that the tests were just junk. No other time in our life did her autoimmune issues that basically went away 8 years ago, came back 10x harder. Same thing with almost all of your symptoms. She's finally slowly getting better, but she still can't eat gluten right now.

Sorry to hear about your wife. As grandparent comment implies, it’s likely not just COVID that causes these autoimmune problems, but COVID is the thing that most people in recent times got that caused this, so it gets the most press. From my research I discovered that ME/CFS/Lupus and a lot of other autoimmune related illnesses have been documented in medicine for decades but until COVID the medical field largely considered these illnesses as mostly just a fringe medical phenomena for interested researchers that was blown off by modern medical practitioners because the science to understand it is incomplete. Now that enough people like myself and you on behalf of your wife are out talking about it, the hope is that science will eventually catch up and figure out why this kind of thing happens

Last year I caught COVID twice. Both times I felt sick, I tested myself daily, and I was negative every time I swabbed my nostrils and nasopharynx. Both times, I started swabbing any yellow mucus that I expelled, and received the positive result that I expected.

> POTS. Standing up made my heart rate spike for no reason. This is a measurable phenomena for people who have autoimmune disorders called the tilt table test. Had this for months.

Same! I was diagnosed with syncope on standing. Every time I stood up from a reclining position, my heart would pound and the world would start fading to black. I too was referred to a cardiologist and had the tests performed. And it also cleared up for me but it took a long time (months).

That wasn't my only symptom. I am completely scientific also. I know about how SARS-CoV-2 binds to ACE-2 receptors, I know about how it lodges itself in multiple organs ... and the symptoms were real.

This was another one where I didn't even think "Covid" when I went to the doctor, but this all coincided with a recent Covid infection.

> My conclusion after all this is that it’s autoimmune and that no one actually understands the mechanism which is why people who complain about this get dismissed.

Sicknesses caused by viruses are known to cause lingering "fatigue syndrome" in rare cases, so I'd be surprised if doctors would just flatly dismiss it. There probably is no such specific thing as "long covid", its just this syndrome that was always a thing.

Thank you for sharing your story. What people don’t realize is that long covid is a fate worse than death, and that’s not very well represented well in the statistics. So we look at the death statistics and say Covid really isn’t that scary. Wrong, it’s worse than that. I wouldn’t wish long covid on anyone (except long covid deniers).

Damn dude. What a ride. I did have those back stabbing pains and headaches like someone took a drill and pushed it agains the back of my head. Crazy outcome. These relatable stories hit very close. I can feel your pain. What made my brain fog go away was the timing and a session of adderall and mild exercise. 2020 was wild.

I too believe my long covid symptoms were an autoimmune issue. Read my HN post from 2021 https://news.ycombinator.com/item?id=26350951#26355878

Interesting that you reported leg/muscle pain, having a burning feeling in my leg was also one of the reasons I went to the ER that day thinking I had a blood clot.

Would it be possible that something else caused it, leading you to also have a more severe episode of COVID? Perhaps you had a preexisting undiagnosed immune disorder, which expressed itself during the COVID episode?

One of the main theories is that the Covid is hiding in areas of the body, and this of course will mess with your other immune responses.

I experienced something similar to OP. Took me around 12-18 months before I felt like the symptoms were abating.

Perhaps, there is a running theory that Covid activates latent Epstein-Barr Virus among other things. But as far as I know it’s just a glorified hypothesis with little scientific evidence to support it.

I wouldn’t even classify the actual covid episode I had as severe (and indeed, as far as I could tell from reading reports there doesn’t seem to be strong correlation between severity of illness and whether someone gets long covid or for how long). It was not bad enough to go to the hospital (though I did consider doing so a couple of times).

I don’t really get allergies or otherwise and consider myself to have a pretty normal immune system. I get sick at about the same rate as what you would expect a normal person to get sick. My health simply took a v shaped nosedive on a graph for 6 months after I got covid.

I've had similar symptoms for 7+ years now so it's most likely for life. Have seen many infectious disease specialists and CFS/ME is the diagnosis (same as long-covid). Mine seems to have been triggered by Glandular Fever (Epstein Barr Virus).

Exertion is the biggest trigger for me, but also the prescribed cure (Gradual Exercise Therapy). Alcohol is a weird one, I often feel better with a hangover than I do on a bad fatigue day (immuno-suppressant?) but then way worse the days after. I also have recurring Mononucleosis symptoms and have tried anti-virals to no avail...

It's so obviously immuno-related, really hope the science progresses soon.

Some interesting articles: https://www.gavi.org/vaccineswork/what-happens-when-you-dont... https://edition.cnn.com/2021/03/12/health/ron-davis-covid-lo...

for those reading, GET is not a/the prescribed cure for mecfs, its contraindicated and is no longer broadly recommended (after a lot of controversy). It was once adopted as a recommendation but its the product of faulty science and a medical system that found the disease inconvenient and largely didn't want to treat/believe it

really sorry you're dealing w mecfs insaider, i feel your pain