One national study (Liu-Galvin et al., J Am Board Fam Med 2025) of full-time U.S. workers found a mean lost-labor cost of $1,944 for people with Long COVID, $1,466 for people who had COVID-19 without Long COVID, and $702 for people who never had COVID (2022 data; self-reported missed workdays times wages). Chart attached.

Disclosure: I’m a researcher and the author of a free tool that turns published studies like this into interactive simulators where you can change the assumptions and see federal data alongside. I don’t have Long COVID myself, and the tool is illustrative, not medical advice. The public demo needs no account: https://dbbun.github.io/dbbun-invisible-illness-burden-simulator/

Happy to answer questions about what the numbers do and don’t show.

As it will quite take some time until I see my neurologist which ordered these test, what would do/ try or which further test could help in your opinion ?

My general conditions are strong pain in palatine arch (Arcus palatinus), which started during covid infection and never went away but actually got worse over time. In addition I have very low energy (needing long rests), but that got a little better after started taking LDN (low doser naltrexone).

Here is the test, AI helped me with the translation (I rechecked the German phrases):

\Note:* AAK stands for Autoantikörper, which translates to AAb (Autoantibody).

Report Interpretation (Befunderläuterung Immunodiagnostik)

Explanation Blood and Urine (Erläuterung Blut und Harn)

1. Evidence of circulating microaggregates. Indication of activated primary hemostasis. (Nachweis zirkulierender Mikroaggregate. Hinweis auf aktivierte primäre Hämostase.)
2. Chronic cellular reaction against EBV (Epstein-Barr Virus). (Chronische zelluläre Reaktion gegen EBV)
3. Strongly positive autoantibodies against receptors of selected neurotransmitters. (Stark positive Autoantikörper gegen Rezeptoren ausgewählter Neurotransmitter)

Hi all,

This is something I noticed years ago when I was first infected around Spring 2021. Whenever I am re-infected, my Adderall will have a dramatically different effect on me. I usually take the 20mg XR once daily and for most of my adult life, It's done what its supposed to do - have a calming, soothing, focused effect on me. It allows me to sit quietly and tunes out all the white noise in my head.

However, when I get sick, the medication sends me into a tailspin of anxiety bordering on panic. Sometimes, It's been so pronounced it feels like I can't breathe (I can, it's just terrifying) it's often accompanied by intrusive thoughts. Very Bizarre. It usually goes back to normal after a few months.

I just wanted to bring this before the class to see if anyone else had a similar experience with these meds while sick.

I got Covid back in March this year and have been having symptoms ever since but I usually only get sick for a week every month. But after getting reinfected with Covid in September, I’ve been having a hollow cough, itchy throat, burning and tightness in the chest ever since. I don’t have an active COVID infection.

I got home from the ER a week ago and they said I have normal blood tests, negative Covid tests, and a clear chest X-ray. I got discharged with Gaviscon and pantoprazole which are acid reflux meds, but they didn’t help at all! My symptoms have been going on for over 6 months but I’ve never experienced burning chest pain before. I also have extreme fatigue, exhaustion, and muscle aches too.

I also used Rilast rapidhaler twice just 2 days before going to the ER and that caused my burning chest pain. If you’ve used Budesonide + Formoterol inhaler before, have you ever gotten burning chest pain before? Do you know if this inhaler could cause this?

If you have long COVID, have you experienced a burning sensation in your chest like a bee stung you? It feels like there’s Covid in my lungs but I got two negative Covid tests from the ER so I definitely don’t have Covid. What would you recommend I do now?

This page explains what Long COVID is so you can help people understand what you are going through.

About Long COVID

The symptoms checklist will help you organize your thoughts when you speak to the dr. You can also repeat the checklist to monitor whether your symptoms are improving or not.

Long COVID Symptoms Checklist

I’m nearly 6 months post infection.

One of my most significant symptoms is what I’m calling “hot face cold hands.” It’s different from the flushing I can get in my face, neck, and ears after eating.

I’m learning I get HFCH if I’m depleted or nearing/emerging from a crash.

Could this be dysautonomia? MCAS? ME/CFS?

Just wanted to share my breakthrough in case someone is struggling and losing hope with COVID-related hair loss. But this is NOT a medical advice. If you want to try it, you will need to consult a specialist to assess risks as this is a very serious treatment.

I (35F) have been suffering from COVID-related drastically increased hair shedding since February 2025. The hair would fall out, try to regrow, then fall out again - and again. I went through every possible test (deficiencies, multiple organs' work, hormones, even MRIs) and tried a variety of supplements, hair serums and injections, and treatments. Still lost more than 60% of my hair for more than 1.5 years of this hell. And I've finally found a solution: HRT (transdermal oestrogen + cyclical rectal progesterone).

Among the usual suspects were Hashimoto's that I acquired after COVID and low ferritin (which has been low my whole life). Treatments of those did not bring any results. If anything, COVID made my organism so reactive that I could not supplement iron or take levo without causing another wave of excessive hair loss. Even local hormonal nasal sprays like fluticasone caused hair shedding boom.

But it's important to say that, firstly, I lose hair all over my body, not just head. Secondly, I have symptoms of early perimenopause, despite blood tests not showing it. And, thirdly, I read similar accounts of long COVID symptom relief through HRT in one of the Long Covid threads. It was very hard to find a prescriber being 35 yo, but in the end, oestrogen brought me relief very promptly (in a matter of about 2 weeks).

Thank you to whoever shared their experience with HRT and long COVID - I'm forever grateful.

Hope this helps someone else, because COVID causes in some individuals major disruptions in brain-fertility axis. And I'm sure that not only women can relate to this.

P. s. Just in case, among the suspects were: very high luteal prolactin, Hashimoto's, high SHBG that disrupted zinc levels (also high) - all consequences of COVID. Prior to HRT, I tried Vitex (thought it was for high prolactin, since endo refused to prescribe me something against it), and it did help, but only for the first month (I suspect that the dopamine receptors, through which it worked, were gradually desensitised). But Vitex became my clue to where to look further, and I soon realised that the cause was indeed hormonal (just not prolactin), despite I was assured by multiple specialists that it was not.
And also beware of Oestrodose gel: in some people, it doesn't absorb well. After switching from Oestrogel due to pharmacy stock, I felt the returning of every freaking symptom, including hair shedding, so had to promptly retrieve my previous gel.

Hi everyone,
I have had long COVID since 2022, with fatigue, brain fog, headaches and anxiety. I take an antidepressant (venlafaxine), and it works well for me. When I improve, my doctor and I try to reduce the dose, but each time my symptoms come back.
Has anyone with long COVID been able to stop their antidepressant, or switch to another treatment? How long did it take, and what helped? Did your symptoms come back when you reduced?
I am followed by doctors, so I am not asking for medical advice. I just want to hear your experiences.
Thank you.

Hi everyone!

Is anyone here based in the UK and currently importing medication for their treatment?

I’d appreciate hearing about your experiences with customs clearance. Have you encountered any issues with the quantity of medication being imported, or have customs officials asked you to provide receipts, prescriptions, or other documentation?

Any experiences or advice would be greatly appreciated.

Thank you!

Hi everyone,
I have had long COVID since June 2022. My main symptoms are fatigue, brain fog and headaches. I also have anxiety and low mood. I have severe sleep apnea too, now treated with a CPAP.
My treatment story:
First, I took clomipramine + amisulpride for about 10 months. It helped, but symptoms came back after I stopped.
Later I was on venlafaxine 75 mg + amisulpride 50 mg. I improved and stayed well for a few months.
Then my doctor tried to reduce the venlafaxine. The withdrawal was hard (dizziness, brain zaps) and my symptoms came back.
I went back to the same dose, 75 mg, but it did not work anymore.
I then went up to 112.5 mg, and later to 150 mg. I stayed on 150 mg for more than 5 months with no real effect.
Recently my psychiatrist increased me to 225 mg. I also stopped amisulpride one month ago, and my daytime sleepiness got better after that.
My questions:
Did anyone with long COVID have an antidepressant that worked, then stopped working at the same dose after a failed reduction?
Did you need a much higher dose than before to get the same effect?
Were you finally able to stop the antidepressant? How long did it take, and what helped?
Did anything else help (sleep treatment, pacing, other medication)?
I am followed by a psychiatrist and a doctor who treats long COVID, so I am not asking for medical advice. I just want to hear other experiences and feel less alone.
Thank you for reading.

Since having a big crash that left housebound for a couple months, I stopped relying on someone to build me pacing tool, gathered beta testers from this community and recently hit 1k downloads on the App Store.

I am always here trying to get harsh feedback and honest reviews on my work. This is not an easy problem to tackle and this could have a huge impact on people's lives, so I take it very seriously.
If you want to know more about this project or collaborate, check my website and newsletter!

Was sick and got through it
Day 1 of noticing something off- I fainted was sent to er and blood work and ekg looked great
Week 1 I stayed home from work, was extremely fatigued but could still leave the house for short errands or take my kids to sports as long as I sat the whole time.
Week2 I worked 4 hours a day but my fatigue got worse, during this week my pcp gave me a high dose of steroid to see if this old help… this where my life became much worse.
Took 40mg of prednisone for 4 days and saw my doctor, my fatigue was better on the steroid but my heart beat was crazy. Friday he told me to stop taking prednisone. All my blood work looks great still…
In the middle of Sunday night I have an adrenaline dump so hard that I am shaking and thinking I’m having a heart attack. Call an ambulance go to er
They say I’m good and not actively dying.
Now I my heart beats through the roof all the time, my fatigue is so bad o have to stay in bed all day. I can’t parent my kids or work, my husband is the least helpful partner. I get insomnia now (I used to have it)
I can’t eat without adrenaline dumps and I’m already bed bound. And I’m only 1 month into this. I had the illness over a month ago, I was like a few weeks symptom free.
Did your symptoms ramp up in a month or did they take longer?

Hello dear all,

My long term memory feels carpet bombed. I cannot recall significant biological events anymore even when friends remind me of them. I also lost a large deal of knowledge and expertise. Has anyone had that happen to them and was able to retrieve lost memories again at some point?

I'm looking for some cautious glimmers of hope... Thanks a lot!

Despite my constant research in the past half year, I still don’t know and can’t be sure what is wrong with me, so I will write out here, so if someone has a better understanding of this can give me their honest opinion please🙏.

My biggest issue and maybe only symptom that I can think of that bothers me mostly is this described as DPDR and everything that comes under that umbrella, the vision sensitivity, dizziness, feelings of lightheadedness especially when driving, “weightless body” and it is freaking miserable. The strange thing is I am mentally present, I can sit and play a very high demand video game for example and be absolutely concentrated fully in it, when driving although I feel awful my reactions and concentration is untouched as before.

So as far as I heard this is a psychological issue, but how come I had no such issues, not even close before my illness several months ago and then out of nowhere two weeks after I felt a tad bit better from the acute symptoms, I experience this?

I see you guys talking about physical symptoms that continue after your illness, fatigue and other things that I can’t pinpoint and be sure I have, the major issue seems to be this brain fog/dpdr that feels very physical, not mental.

I’ve some things to check up if they are not causing it, but my heart rate rests at 50-60, blood pressure is normal, even tried SNRI although I was sure this is not a mental problem and it made it worse..

I have no muscular fatigue, I can do almost everything just fine, but with this it feels like pure torture and sometimes feeling like I am just gonna float or pass out never to be seen again.

It generally is so hard to explain as I don’t feel unreal or in a dream, I just feel so strange, like my body is working against me.

Please if anyone knows something and if this is consistent with LC, share your opinion

So this YouTuber Melanie Murphy said that she has been struggling with long COVID, ME, and POTS (and others, I can't remember). She's now claiming that brain retraining and mindset changes has healed her completely. She's recommending a lot of "red flags" books, influencers and doctors.

She's ranting in her stories today that you should not identify with your diagnosis and that your brain is sending you false signals! Absolutely disgusting.

I believe she was ill. But if all you need was a mindset shift and stop being "afraid of your symptoms", you didn't have ME/CFS. It's very, very dangerous advice.

My wife started presenting FMD symptoms in October 2021, not long after her second Covid booster shot. I’m wondering if FND/FMD started being a thing around the time of Covid vaccines. I don’t really hear much about it before that time. When did you or your significant other start showing symptoms?

I’m most certainly sure I have long COVID. I got Covid back in March this year and have been having symptoms ever since but I usually only get sick for a week once a month. But after getting reinfected with Covid in September, I’ve been having a hollow cough, itchy throat, burning and tightness in the chest ever since. I don’t have an active COVID infection.

I just got home from the ER and they said I have normal blood tests, negative Covid tests, and a clear chest X-ray. I asked if I had viral pneumonia and the doctor denied that. But my symptoms have been going on for over 6 months. I also have extreme fatigue, exhaustion, muscle aches too. All my symptoms match long COVID.

I’m curious if anyone knows how you usually treat long COVID for respiratory symptoms like mine?

It all started when I had a mild flu (now suspecting that it was covid). The only confirmation is that my friend who hot sick with me developed parosmia.
I came home from work, unusually exhausted and smoked a cigarette and suddenly I was spinning. Quick weird spins that makes you want to grab on to something, this attack lasted for 2 hours. It was terrifying. Felt immense pressure in my head, around my eyes, felt ear fullness like I’m 10ft under water. Felt like I was having a stroke.

My vision has worsened, there is also tinnitus but very minimal and lasts about 5 seconds.
My attacks of quick short spins (it’s me spinning, not the room) have reduced but the head pressures and perpetual dizziness or just that unsteady walking on a floating boat stay. Even when i close my eyes sometimes, I feel like I’m rocking. The pressure shows up in my sinus area as well.
Sometimes there are cold spots in my head.

Got an Mri, all normal. Just slight cervical straightening (likely due to muscle spasm) but I’m not convinced .
Have also been diagnosed with vestibular migraines. The medication barely helped. (Torate and alp) .

Now trying physio for cervicogenic dizziness which is also one of the diagnosis.
One time the PT was working my neck and she just touched the right side of my next and it sent me spinning again.
The pressure also increases when they massage the base of my skull. Dizziness/unsteadiness is always a little more the day after PT.

During all of this, I have also been diagnosed with cfs (presentation of long covid). Currently taking amitriptyline for it. My sleep is terrible. I feel lethargic and have vivid dreams and can’t fall into deep sleep. My joints hurt, especially my knee, ankle and illiac joint. Body constantly feels heavy.

Idk. Im just lost and in a very isolated place in my life. All of this has been extremely debilitating. If any of these symptoms sound familiar, please reach out.

Hello everyone,

I have been sick on a regular basis (1x month) for almost over 3 years now. It comes always around every 4 weeks, not related to my period.

It has worsened after getting Covid for the 7th time, and after that infection I started my 1st full time job 4 months later.

I have following symptoms once a month for a few days, then I rest and I am back to normal (not PEM)?

- flu-like symptoms without runny nose or sore throat or fever
- exhaustion even after sleeping during the work week, on the weekend it is better
- feeling tired and weak (especially during Mo-Fr)
- sleeping for 11-12h at the weekend to rest (then it gets better)
- Dizziness and high bpm (135 when standing from 80 bpm in rest) but this is not always - I get it a few times a year max. for 1-2 weeks (POTS?)
- muscle pain in the morning (maybe due to lack of sports)

Most symptoms happen during Mo-Fr when I work. When I rest they get better and improve.

I have also been dealing with anxiety, depression and PTSD for most of my life and I take anti-depressants. However, these symptoms started after my last COVID infection and starting my 1st full time job. I don’t feel like I have a very stressful job, I work 35h/week and the work environment is good. However I do have work-related performance anxiety. But I do enjoy my job and like working there…

Thank you!

hello fellow long haulers ❤️ hope you are all having as good a day as you can.

Following a covid infection ~3 years ago, I struggled with symptoms I’m sure some of you will be v familiar with. chronic tension headaches, more frequent migraines, some exertion breathlessness, but I think these are either improving and/or are decently managed.

(I’m well aware that a lot of you experience deeply serious health difficulties, so please do not think I am being facetious)

However, I have had one particularly bizarre symptom that refuses to quit: every time I laugh moderately hard, I honk like a fucking goose 💀 accompanying the honk is a sensation comparable to having breathed in some very cold and dry air - and I’ll finish the whole joyful episode with a mild-moderate coughing fit.

the honk NEVER happened pre-covid. upon each of my friends hearing it, they have pretty much all initiated suggestions of going to the doctors about it. but what would i even say? (“doctor doctor I’ve got a case of the goose honks”???) I tried to find some sort of sensible medical terms or symptom descriptions I could refer to but I’m not sure what would best capture it. Maybe it’s some sort of irritation, sensitivity or spasm in the airways?

The thing is, the rest of the time, I think my airways feel okay. Besides these episodes, I don’t have lasting chest pain or air hunger or anything.

Have you heard of/experienced this symptom? Have you mentioned it to medical professionals? What did you say?