When to accept permanent long covid?

Posted by gregorb @gregorb, May 8 12:33pm

Had Long Covid for 11 months. Is there still a chance it could go away or is it time to accept as permanent. Have heard give it anywhere from 1 to 2 years. Any feedback on that?

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I am so sorry. I do hope you can find a counselor, good friend, or someone who can provide needed support, to keep reminding you to be gentle with yourself, to not overdo, and, (my biggest bug-a-boo) to not compare what you thought you would accomplish, absent LC, to what was done at the end of the day. Wishing you gentle days.

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Just for perspective.
The original vaccine came out in 2020 and stayed the same until 2022, when the Omicron variant (34 mutations) was added.
2023 saw another vaccine that added an additional 17 mutations, followed by the latest 2024-2020 "XB-2" formulation that has added an additional 38 mutations to all the previous formulations.
So it seems that the vaccines are reconfigured on a roughly annual basis.

To answer your specific question, I don't believe that we have LC because we keep catching new variants! Hopefully you are keeping your vaccinations up to date, and using appropriate cautions when out-and-about.
There are many, many studies ongoing about LC, and we are hopefully awaiting some definitive conclusions and, hopefully, remedies before too long.
My personal suspicion/theory is that we have an ongoing, post-viral heightened immune response/reaction and resultant inflammation, sustained long after the initial (acute) infection has passed, so the current configuration of the circulating virus might not be all that relevant, (if that makes sense... doubt it...)

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Sandguy.
Thanks for your very informative post. Best wishes.

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Profile picture for sanDGuy @sandguy

Just for perspective.
The original vaccine came out in 2020 and stayed the same until 2022, when the Omicron variant (34 mutations) was added.
2023 saw another vaccine that added an additional 17 mutations, followed by the latest 2024-2020 "XB-2" formulation that has added an additional 38 mutations to all the previous formulations.
So it seems that the vaccines are reconfigured on a roughly annual basis.

To answer your specific question, I don't believe that we have LC because we keep catching new variants! Hopefully you are keeping your vaccinations up to date, and using appropriate cautions when out-and-about.
There are many, many studies ongoing about LC, and we are hopefully awaiting some definitive conclusions and, hopefully, remedies before too long.
My personal suspicion/theory is that we have an ongoing, post-viral heightened immune response/reaction and resultant inflammation, sustained long after the initial (acute) infection has passed, so the current configuration of the circulating virus might not be all that relevant, (if that makes sense... doubt it...)

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Perhaps that is why some call Long-Covid "Post-viral infection syndrome," a term which has also been applied to Chronic Fatigue Syndrome, cytomegalovirus, myalgic encephalomyelitis, and possibly others.

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@sandguy, I really like your idea, it makes a lot of sense about long covid…I had heard earlier on that finding a vaccine for covid would be very challenging due to the fact that it mutates very rapidly, in one study they said that the virus mutated inside your body!! It’s going to take a long while to figure out what to do about this problem, we can only hope and pray that someone will discover the solution to this problem, amen.

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Profile picture for mohill @mohill

I totally understand. Zero compassion. I'd like to think they're over worked & super frustrated, but empathy is a critical part of healthcare.

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You sure would think so.😥

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Profile picture for gregorb @gregorb

Sandguy.
Thanks for your very informative post. Best wishes.

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Thanks gregorb!
BTW, just noticed a typo in my above description of the Covid vaccine history:
2024-2020 "XB-2" should have read 2024-2025 "XB-2".

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Profile picture for joanland @joanland

Perhaps that is why some call Long-Covid "Post-viral infection syndrome," a term which has also been applied to Chronic Fatigue Syndrome, cytomegalovirus, myalgic encephalomyelitis, and possibly others.

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Yes, that's precisely. what I had in mind when I posted that.
CFS and ME are synonymous, BTW, CFS is the more American term, and ME the more "British".
And, yeah, having now had both, I suspect that LC and ME/CFS are likely the same syndrome. Of course, I might be a little subjective here.

It's a bit discouraging (and baffling) though, that with DECADES of research on CFS, no definitive treatment has been found.

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Profile picture for sanDGuy @sandguy

Yes, that's precisely. what I had in mind when I posted that.
CFS and ME are synonymous, BTW, CFS is the more American term, and ME the more "British".
And, yeah, having now had both, I suspect that LC and ME/CFS are likely the same syndrome. Of course, I might be a little subjective here.

It's a bit discouraging (and baffling) though, that with DECADES of research on CFS, no definitive treatment has been found.

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When I was sick for weeks as a 3rd grader, as an 8 year old, the unknown virus I had was called "virus X." That was 77 years ago, but I'm not going to tell my age. Seems like something like "post viral infection syndrome" has been around for a long time.

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Profile picture for joanland @joanland

When I was sick for weeks as a 3rd grader, as an 8 year old, the unknown virus I had was called "virus X." That was 77 years ago, but I'm not going to tell my age. Seems like something like "post viral infection syndrome" has been around for a long time.

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Wow, "virus X"! Sounds so sci-fi.
Ties in with my own personal, soon-to-be viral (in the digital sense) conspiracy theory about ties between CFS/LC corresponding to alien/UFO/UAP sightings and, yes, actual abductions!
(Need to create a TikTok account, lemmee see...)
But do I have your permission to use your term "Virus X"?
(I think I'll have to incorporate the song "Planet Claire" in there somehow, as it just sprang to mind).

But, seriously (for me), apparently "Virus X" was coined (or adopted) more recently in the 80's by the WHO to refer to a hypothetical virus that might appear and cause a world-wide pandemic. It seems to be used that way currently.

What you had then might have been referred to, as far back as the 19th century, as "neurasthenia"! Makes me think of terms such as "a rheumy catarrh" (for a bad cold).
Worth looking at this Wiki page:
https://en.wikipedia.org/wiki/History_of_ME/CFS.
It's a great look back, and reminded me of stuff I had looked up and researched back in the early 90's. It also mentions the apt phrase "Raggedy Doll Syndrome", which is rather delightfully and whimsically descriptive of how many of us sometimes feel.

But, yes, you're correct that this (or some manifestation of this) has indeed been around for a long time, and thank you for that lovely bit of personal history!

p.s. So impressed that you're 85 years young!

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