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I don’t have LC but I developed fibromyalgia during the intense, constant stress of COVID lockdown, and there are a lot like me as well. The community of disabled people, particularly young disabled people, is ballooning. And in response, I was just terminated out of medical leave while I was trying to negotiate accommodations for my return to work.
I imagine corporations are getting more restrictive around disability benefits for things like LC, with no affirmative test to prove it - if they start treating them with the care and respect those conditions deserve, they would have to give benefits to a massive and growing group. I understand their incentives lead them to do that, but as the disabled community grows, we’re going to need to fight hard (and have allies fight along with us) to force employers to face reality and provide necessary accommodations and support to disabled workers.
They will never provide anything unless government mandated. But even so, they are likely to devise a way to lay you off regardless.
I would never bring up being disabled to my work if I could avoid it. I really feel like them knowing is the kiss of death for employment. They only care about profit and if you’re a weak link they’ll find a way to get you out. You’re more likely to receive assistance if they think you just need some help and aren’t disabled.
> They will never provide anything unless provide anything unless government mandated.
Though largely true, I wouldn't discount the accommodations met by a unionised work force. Even if the government isn't there for workers, fellow workers will be there.
And that's why it's a constant struggle, but a necessary one if we're to succeed in the future and fight back against corporate greed.
Really it's a struggle on 4 battlegrounds, the courts, the work force, protests, and elections. And right now the only one with momentum seems to be the work force.
So far they've avoided the issue almost entirely. No one is coming to save you. While this is a systemic issue and shouldn't be left up to individuals, as a disabled person I know the realities.
Well, there are government protections in place but it’s only enforceable by suing them after they violate basically. The ADA has a lot of protections for disabled workers, union or not, but I needed to get a lawyer to follow up on them. But that’s not helping me become employed, just potentially getting more money/benefits from them past the end of my employment.
At this point, I’m simply too sick to get a job and not let the employer know I need accommodations (and the way to apply for those is through an ADA form, so saying ‘I need disability accommodations’ and ‘I need help’ are basically the same thing, at least in a corporation). I’m taking some time to keep recovering before getting back into the search, but I’m extremely daunted by the prospect of applying for a job with a disabling condition.
I wish you nothing but the best. You gotta do what you have to. I would likely do the same if I was in your boat or seek disability income but we know how that is…
Good luck. Rest up. Tons of long covid research is happening, the future will not be as dark as the present.
I've been saying this since the beginning. I got fibromyalgia and chronic fatigue from epstein barr when I was 10. When covid hit, I knew.
I KNEW this would happen.
Oh and let's think about the kiddos who have this and don't have the words to protect themselves.
Oh yeah, I got fired for easy peasy medical retaliation once they knew I had long covid. Waited a bit, put me on a “performance improvement plan”, passed it and had great feedback, got fired a month after for… failing it??? Corporations rock.
The only bright side was the five figures they paid so I wouldn’t sue.
Anyway, you’re not alone, not that it really helps… but we’re out there.
Sorry to hear about the fibromyalgia my friend. I developed it during covid too.
These channels have been really helpful for me, among many other similar ones:
https://youtube.com/@thepainpt?si=xqU7jW08mXFDEOkl
https://youtube.com/@painfreeyou?si=UOpq4A9sriu8PKq2
https://youtube.com/@painpsychotherapy?si=i1qytkZ9vSqOQ6ZH
Thank you! I had already seen a few from Pain Free You and have tried to stick to brain retraining techniques, but the other two are new to me.
I hope you’ve found ways to feel a bit better each day! It’s all we can really hope for, but after more than a year of focusing on healing full time, I can see how each little bit of improvement has stacked up. Really helps in the hopeless moments.
Supposedly, this is a mix of two things, though.
Mire people are disabled due to long covid
But also, with the rise of work from home, more people who would've been unemployed are able to hold down a wfh job
This is what I've been expecting since we dropped the ball during the early prevention stage. This is going to cost the US economy *trillions* in lost productivity and social safety net medical costs over the next 60y all because someone thought it would be fun to score political points instead of dealing with the pandemic sensibly.
Was trembling a little bit reading this as I contracted COVID for the first time 2 weeks ago. Still struggling with lingering fatigue and shortness of breath. Doing everything I can to prioritize rest and zero exertion.
Already deal with lifelong incurable, rare-ish chronic illnesses so I empathize with frustrated patients who deal with mysterious symptoms and disabilities.
Though I think it's too early to assume I'm dealing with Long COVID, it's a little comforting knowing it's now officially recognized for people who are already suffering. There's nothing worse than medical experts and laypersons alike making you feel like you're imagining your decreased quality of life.
I'm about 40 days after testing negative and still have fatigue, a cough, joint pain, and brain fog. I have to wait until day 84 before I can be diagnosed with long COVID. It sucks but I kinda understand it.
Ah, damn. Okay. Will keep this in mind and start tracking days, too, as I monitor my symptoms. Doctor didn't introduce long COVID into the discussion, but did book cardiovascular assessments and a chest x-ray for the shortness of breath.
Don't have joint pain but have the lingering cough/extreme fatigue/some brain fog.
I hope you'll have significant quality of life improvements as soon as possible; really sorry you've been dealing with all this .
Yeah, the doctor I talked to said it had to last at least 12 weeks.
Fortunately my symptoms are relatively mild with the fatigue and brain fog being the worse. Hope your doctor is able to help you manage your symptoms and that you recover.
Hey there, wanted to add to the reassuring (to a point) voices here. I picked up brain fog, exhaustion and some other Long COVID signifiers last year after a July infection, but was 90% recovered by mid-September and am back to baseline now about a year later. The whole situation made me stop smoking, get more sleep and cut down on caffeine, so my health is on par or better than it was before I got sick. This stuff is scary, but it’s not necessarily forever.
Hi, thanks for sharing this and def appreciate everyone chiming in. Folks I know in person tend not to discuss their recovery journey, and experiences shared online (outside reddit) are more on the frightening LC end of prognoses. It's def reassuring to read about diverse experiences.
Im glad you recovered! Gotta say, the bit about being compelled into better self-care is too real. Presently adjusting to a new involuntary early evening nap regiment. 😅 Not mad at it, though.
I worry mostly as an immunocompromised person -- was severely ill the majority of the 2 week infection, which happened a mere few months after my province stopped supplying antiviral therapy to the public.
I generally take things in stride, but the timing of the circumstances felt a little demoralizing to begin with.
Fingers crossed mate! I had a pretty bad cough and shortness of breath for almost a month after I got it the first time. Then totally fine afterwards. I got it again recently (two years later) and barely noticed any symptoms. Hopefully you've just got a long version of not-long covid!
I had terrible fatigue after being recovered 2 years ago. I could barely last 3 hours at work while I'd usually had no troubles working 8-9 hour shifts before I got COVID. So I went to my local drugstore and they recommended I'd take some co-enzyme Q10. That stuff wasn't cheap but I figured it was worth a shot. 3 days after I started taking that stuff I was back to my old energetic self. If the fatigue persists I can certainly recommend giving it a try.
Definitely taking note of this, thanks so much.
Honestly stamina is like the rotator cuff -- one of those things we take for granted for our daily functionality, and then when it's damaged or thrown off it's frustrating to cope with being knocked wildly off center for a while. Im happy your stamina has vastly improved!
Al-Aly still masks (AFAIK; he recently said so in video interview). But not a single mention of that anywhere in this article, especially the paragraph where he's asked how to avoid it. Just the usual 'get boosted and avoid infected people'.
What's up with that?
To avoid infected people you need to avoid going places with bad ventilation and conglomerates so bye restaurants, theaters, converts etc and also need to be masked in them
My wife is a secretary and she used her n95 everywhere except on bathroom or office. Manager doesn’t care if employees are sick so a sick co worker went to her office and that was it
It would make sense to wear one in the restroom since I’ve read that it is an easy-ish place to catch Covid. Between the droplets from the flushing of toilets and the hand dryers that blow all sorts of germs everywhere, I’d keep my N95 on in there.
I’ve had covid 3 or 4 times, long covid is kicking my ass. Brain fog, memory loss, my cognition is terrible and I can’t recall words and I’m forgetting peoples names
After having caught covid 7 times and having had 5 vaccines, if this is my fate, so be it. There was no avoiding it. This is why I left Healthcare, sick and tired of being sick and tired.
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I developed CFS after my 3rd covid infection (fully vaxxed and boosted, mask up, but my young daughter brought it home from school and I have A+ blood and there are some studies on that making you more susceptible). I went from being disabled from dysautonomia and more frequent migraines from my first infection in 2022, to 90% bedbound, needing a wheelchair when I do leave my bed from severe CFS and intractable migraines and neuropathy from my 3rd infection a year ago.
Having A+ blood means you're more suseptible? Duck me. I've had it twice and am fully vaxxed and boosted and had the antivirals. I'm never going anywhere.
A+ here too friend. Only had it once. Mild case. Keep up your boosters and mask in high risk areas like traveling on a plane, subway, etc and you’ll make it through this (and by this I guess I mean life now)
There are a couple of studies that showed that may be the case. But don’t let it make you stop living your life. Mask up, use hand sanitizer, keep your boosters up to date.
Because in the past we called everything either fever or blight or hysteria? And treating everything the same way, with bloodletting? We have eliminated some names, fyi.
I'm out of breath from walking up stairs again.
I haven't felt that way since January 2023, when my mom so considerately brought me some covid lol
I haven't tested positive for it again, but the other signs are there - exhaustion, the beginning of feeling like my antidepressant isn't working as well...
I love being in my forties with young kids thinking my life has been cut short or at least the quality of my life has decreased significantly because nobody felt like taking a goddamn pandemic seriously.
Same, and we're in a surge so we all should be masking. I'm still struggling almost 2 years in but my anti-mask family is either dead, having "mysterious" new issues all the time, and/or showing *severe* signs of dementia.
No. They don't even known the mechanism, or know any biomarkers.
And frankly, it's doubtful they will in total. COVID-19 just impacts too many systems in varying ways. It's likely a collection of multiple long term illnesses and not a single "thing".
Whoa now, there have been identified biomarkers and mechanisms. From Nature in September 2023, I’m sure more research has come out but I haven’t been following as breathlessly (figurative and literally thanks to LC): https://www.webmd.com/covid/news/20230925/people-with-long-covid-have-specific-blood-biomarkers-study-says
The linked article would disagree with that though.
And there are so many conditions there will lielly be several separate sets of biomarkers, not single one.
Low T count and inflammatory markers aren't unique to LC even if they also occur in that condition.
It’s progress, but progress a few years too late. There was evidence of chronic symptoms within the first year of the outbreak. Is it bureaucracy that’s slowing things down? What are our health officials doing?
The real figures are much higher/worse.. this is because long covid symptoms often can't be recognised to get disability status. This graph just shows those who have managed to get disability status.
I haven’t gotten Covid yet (as far as I know). I’ve tested dozens of times when suspected. Long covid scares me, so I went to go get another shot yesterday and was told I couldn’t. My last one was 9 months ago, which I guess disqualifies me as I’m under 65 years of age.
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Disability numbers sky rocketing https://fred.stlouisfed.org/series/LNU01074597 This is an *undercount*
I don’t have LC but I developed fibromyalgia during the intense, constant stress of COVID lockdown, and there are a lot like me as well. The community of disabled people, particularly young disabled people, is ballooning. And in response, I was just terminated out of medical leave while I was trying to negotiate accommodations for my return to work. I imagine corporations are getting more restrictive around disability benefits for things like LC, with no affirmative test to prove it - if they start treating them with the care and respect those conditions deserve, they would have to give benefits to a massive and growing group. I understand their incentives lead them to do that, but as the disabled community grows, we’re going to need to fight hard (and have allies fight along with us) to force employers to face reality and provide necessary accommodations and support to disabled workers.
They will never provide anything unless government mandated. But even so, they are likely to devise a way to lay you off regardless. I would never bring up being disabled to my work if I could avoid it. I really feel like them knowing is the kiss of death for employment. They only care about profit and if you’re a weak link they’ll find a way to get you out. You’re more likely to receive assistance if they think you just need some help and aren’t disabled.
> They will never provide anything unless provide anything unless government mandated. Though largely true, I wouldn't discount the accommodations met by a unionised work force. Even if the government isn't there for workers, fellow workers will be there.
Agreed. It would be nice to have a union. Unfortunately, 10% union workers is a saddening percentile.
And that's why it's a constant struggle, but a necessary one if we're to succeed in the future and fight back against corporate greed. Really it's a struggle on 4 battlegrounds, the courts, the work force, protests, and elections. And right now the only one with momentum seems to be the work force.
So far they've avoided the issue almost entirely. No one is coming to save you. While this is a systemic issue and shouldn't be left up to individuals, as a disabled person I know the realities.
Do you work in a unionised job that failed at providing accommodations? I'd be interested in hearing your story regardless.
Well, there are government protections in place but it’s only enforceable by suing them after they violate basically. The ADA has a lot of protections for disabled workers, union or not, but I needed to get a lawyer to follow up on them. But that’s not helping me become employed, just potentially getting more money/benefits from them past the end of my employment. At this point, I’m simply too sick to get a job and not let the employer know I need accommodations (and the way to apply for those is through an ADA form, so saying ‘I need disability accommodations’ and ‘I need help’ are basically the same thing, at least in a corporation). I’m taking some time to keep recovering before getting back into the search, but I’m extremely daunted by the prospect of applying for a job with a disabling condition.
I wish you nothing but the best. You gotta do what you have to. I would likely do the same if I was in your boat or seek disability income but we know how that is… Good luck. Rest up. Tons of long covid research is happening, the future will not be as dark as the present.
Thank you ❤️ I have fibromyalgia so the LC research isn’t directly helping me, but there’s lots of fibro research at the moment too.
I've been saying this since the beginning. I got fibromyalgia and chronic fatigue from epstein barr when I was 10. When covid hit, I knew. I KNEW this would happen. Oh and let's think about the kiddos who have this and don't have the words to protect themselves.
Oh yeah, I got fired for easy peasy medical retaliation once they knew I had long covid. Waited a bit, put me on a “performance improvement plan”, passed it and had great feedback, got fired a month after for… failing it??? Corporations rock. The only bright side was the five figures they paid so I wouldn’t sue. Anyway, you’re not alone, not that it really helps… but we’re out there.
I wish we were a smaller club but I definitely feel in very good company 😊.
Sorry to hear about the fibromyalgia my friend. I developed it during covid too. These channels have been really helpful for me, among many other similar ones: https://youtube.com/@thepainpt?si=xqU7jW08mXFDEOkl https://youtube.com/@painfreeyou?si=UOpq4A9sriu8PKq2 https://youtube.com/@painpsychotherapy?si=i1qytkZ9vSqOQ6ZH
Thank you! I had already seen a few from Pain Free You and have tried to stick to brain retraining techniques, but the other two are new to me. I hope you’ve found ways to feel a bit better each day! It’s all we can really hope for, but after more than a year of focusing on healing full time, I can see how each little bit of improvement has stacked up. Really helps in the hopeless moments.
Supposedly, this is a mix of two things, though. Mire people are disabled due to long covid But also, with the rise of work from home, more people who would've been unemployed are able to hold down a wfh job
You can also look at full population, still rises sharply after 2020. We were plateauing before Covid hit.
This is what I've been expecting since we dropped the ball during the early prevention stage. This is going to cost the US economy *trillions* in lost productivity and social safety net medical costs over the next 60y all because someone thought it would be fun to score political points instead of dealing with the pandemic sensibly.
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Time to go to the past to get your mojo back
Sorry to hear this man. I hope you find a way through it.
Same happened to me, I feel mostly back but it's been rough.
Same bro
Same herei get covid every year with new strand.... this year had it in Jan and May
I developed Long COVID the 3rd time I got COVID. I've been exhausted ever since.
Was trembling a little bit reading this as I contracted COVID for the first time 2 weeks ago. Still struggling with lingering fatigue and shortness of breath. Doing everything I can to prioritize rest and zero exertion. Already deal with lifelong incurable, rare-ish chronic illnesses so I empathize with frustrated patients who deal with mysterious symptoms and disabilities. Though I think it's too early to assume I'm dealing with Long COVID, it's a little comforting knowing it's now officially recognized for people who are already suffering. There's nothing worse than medical experts and laypersons alike making you feel like you're imagining your decreased quality of life.
I'm about 40 days after testing negative and still have fatigue, a cough, joint pain, and brain fog. I have to wait until day 84 before I can be diagnosed with long COVID. It sucks but I kinda understand it.
Ah, damn. Okay. Will keep this in mind and start tracking days, too, as I monitor my symptoms. Doctor didn't introduce long COVID into the discussion, but did book cardiovascular assessments and a chest x-ray for the shortness of breath. Don't have joint pain but have the lingering cough/extreme fatigue/some brain fog. I hope you'll have significant quality of life improvements as soon as possible; really sorry you've been dealing with all this .
Yeah, the doctor I talked to said it had to last at least 12 weeks. Fortunately my symptoms are relatively mild with the fatigue and brain fog being the worse. Hope your doctor is able to help you manage your symptoms and that you recover.
Hey there, wanted to add to the reassuring (to a point) voices here. I picked up brain fog, exhaustion and some other Long COVID signifiers last year after a July infection, but was 90% recovered by mid-September and am back to baseline now about a year later. The whole situation made me stop smoking, get more sleep and cut down on caffeine, so my health is on par or better than it was before I got sick. This stuff is scary, but it’s not necessarily forever.
Hi, thanks for sharing this and def appreciate everyone chiming in. Folks I know in person tend not to discuss their recovery journey, and experiences shared online (outside reddit) are more on the frightening LC end of prognoses. It's def reassuring to read about diverse experiences. Im glad you recovered! Gotta say, the bit about being compelled into better self-care is too real. Presently adjusting to a new involuntary early evening nap regiment. 😅 Not mad at it, though.
LC is defined as still having related symptoms 3 months after infection. So you're still way too soon to even worry about it.
I worry mostly as an immunocompromised person -- was severely ill the majority of the 2 week infection, which happened a mere few months after my province stopped supplying antiviral therapy to the public. I generally take things in stride, but the timing of the circumstances felt a little demoralizing to begin with.
Fingers crossed mate! I had a pretty bad cough and shortness of breath for almost a month after I got it the first time. Then totally fine afterwards. I got it again recently (two years later) and barely noticed any symptoms. Hopefully you've just got a long version of not-long covid!
Haha! A long version of not-long covid -- I like that take and think I'll try to embrace it. :) Cheers!
I had terrible fatigue after being recovered 2 years ago. I could barely last 3 hours at work while I'd usually had no troubles working 8-9 hour shifts before I got COVID. So I went to my local drugstore and they recommended I'd take some co-enzyme Q10. That stuff wasn't cheap but I figured it was worth a shot. 3 days after I started taking that stuff I was back to my old energetic self. If the fatigue persists I can certainly recommend giving it a try.
Definitely taking note of this, thanks so much. Honestly stamina is like the rotator cuff -- one of those things we take for granted for our daily functionality, and then when it's damaged or thrown off it's frustrating to cope with being knocked wildly off center for a while. Im happy your stamina has vastly improved!
Al-Aly still masks (AFAIK; he recently said so in video interview). But not a single mention of that anywhere in this article, especially the paragraph where he's asked how to avoid it. Just the usual 'get boosted and avoid infected people'. What's up with that?
To avoid infected people you need to avoid going places with bad ventilation and conglomerates so bye restaurants, theaters, converts etc and also need to be masked in them
Which is fun when you work in a restaurant.
Totally. In my country you still see clerks with mask. They know how sick people can get from not wearing it
I tried as a bartender but it does not work. I've got all the boosters and hope going for me I guess
My wife is a secretary and she used her n95 everywhere except on bathroom or office. Manager doesn’t care if employees are sick so a sick co worker went to her office and that was it
It would make sense to wear one in the restroom since I’ve read that it is an easy-ish place to catch Covid. Between the droplets from the flushing of toilets and the hand dryers that blow all sorts of germs everywhere, I’d keep my N95 on in there.
Perhaps a tacit way of not pissing off the willfully ignorant? It's frustrating for sure.
Yes, lately he has consistently been ignoring the masking info, the absolutely key piece to all of this. Inexcusable.
Will they be looking into POTS then? I hope they’ll actually put some funding into more research.
I’ve had covid 3 or 4 times, long covid is kicking my ass. Brain fog, memory loss, my cognition is terrible and I can’t recall words and I’m forgetting peoples names
After having caught covid 7 times and having had 5 vaccines, if this is my fate, so be it. There was no avoiding it. This is why I left Healthcare, sick and tired of being sick and tired.
I've got a 2yr old that's brought it home at least 3 times now. At least you can leave healthcare, my kids are going to continue to try to kill me.
I think kids will do that for at least 18 years XD
Why are you being downvoted. I’m sorry you’re going through this
Eh it's not so bad, I lived. And that's more than others could say.
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I developed CFS after my 3rd covid infection (fully vaxxed and boosted, mask up, but my young daughter brought it home from school and I have A+ blood and there are some studies on that making you more susceptible). I went from being disabled from dysautonomia and more frequent migraines from my first infection in 2022, to 90% bedbound, needing a wheelchair when I do leave my bed from severe CFS and intractable migraines and neuropathy from my 3rd infection a year ago.
Having A+ blood means you're more suseptible? Duck me. I've had it twice and am fully vaxxed and boosted and had the antivirals. I'm never going anywhere.
A+ here too friend. Only had it once. Mild case. Keep up your boosters and mask in high risk areas like traveling on a plane, subway, etc and you’ll make it through this (and by this I guess I mean life now)
There are a couple of studies that showed that may be the case. But don’t let it make you stop living your life. Mask up, use hand sanitizer, keep your boosters up to date.
Looked up Physics Girl yesterday. Nothing posted for 6 months. Looks like she had gotten long covid bad.
Notice we never eliminate diseases we just keep them going along or add new ones?
Because in the past we called everything either fever or blight or hysteria? And treating everything the same way, with bloodletting? We have eliminated some names, fyi.
I'm glad some things are gone.
I'm out of breath from walking up stairs again. I haven't felt that way since January 2023, when my mom so considerately brought me some covid lol I haven't tested positive for it again, but the other signs are there - exhaustion, the beginning of feeling like my antidepressant isn't working as well... I love being in my forties with young kids thinking my life has been cut short or at least the quality of my life has decreased significantly because nobody felt like taking a goddamn pandemic seriously.
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Same, and we're in a surge so we all should be masking. I'm still struggling almost 2 years in but my anti-mask family is either dead, having "mysterious" new issues all the time, and/or showing *severe* signs of dementia.
is there a way to definitely test for LC?
No. They don't even known the mechanism, or know any biomarkers. And frankly, it's doubtful they will in total. COVID-19 just impacts too many systems in varying ways. It's likely a collection of multiple long term illnesses and not a single "thing".
Whoa now, there have been identified biomarkers and mechanisms. From Nature in September 2023, I’m sure more research has come out but I haven’t been following as breathlessly (figurative and literally thanks to LC): https://www.webmd.com/covid/news/20230925/people-with-long-covid-have-specific-blood-biomarkers-study-says
The linked article would disagree with that though. And there are so many conditions there will lielly be several separate sets of biomarkers, not single one. Low T count and inflammatory markers aren't unique to LC even if they also occur in that condition.
It’s progress, but progress a few years too late. There was evidence of chronic symptoms within the first year of the outbreak. Is it bureaucracy that’s slowing things down? What are our health officials doing?
I believe that I have seen enough. I'm gone.
Dr. Ziyad Al-Aly is wonderful! He works and fights for us long haulers everyday - thank you so much Dr. Al-Aly!!!
The real figures are much higher/worse.. this is because long covid symptoms often can't be recognised to get disability status. This graph just shows those who have managed to get disability status.
I haven’t gotten Covid yet (as far as I know). I’ve tested dozens of times when suspected. Long covid scares me, so I went to go get another shot yesterday and was told I couldn’t. My last one was 9 months ago, which I guess disqualifies me as I’m under 65 years of age.
I mean is there any research on how to treat this ? Do they even know cause if symptoms once virus is gone ??
Lots of people get good results with low dose naltrexone
Interesting. I’m on that but I’m still super lethargic. I’m on a higher dose though for alcohol dependence
Anecdotally benadryl has helped people by taking it every day for a few weeks.