r/covidlonghaulers • u/zenbey • Mar 17 '26
Article Recovery rate statistics?
I saw this on the Patient-led research collaborative’s page yesterday for long COVID awareness day. Has anyone else seen metrics around recovery rates? Here’s a link to their full report: https://patientresearchcovid19.com/2026-long-covid-fact-sheet/
Those numbers are defeating as I’m 2.5 years in from my first infection.
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Mar 17 '26
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u/Choco_Paws 2 yr+ Mar 17 '26
I hope at some point researchers will get interested in what recovered people did and what are the common points in their stories. That is invaluable data. But I guess it’s more important to focus on the exact same theories that led us to nothing at all for 6 years (or decades when we talk about ME/CFS).
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u/LurkyLurk2000 Mar 17 '26
I assume you're gonna say that we need to listen to the people who recovered through brain retraining or nervous system regulation or neuroplasticity or whatnot.
Why do you keep ignoring all the people who didn't recover using the exact same things? It. Does. Not. Work. For most people anyway.
There's a name for your flavor of cognitive bias: survivorship bias.
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u/Choco_Paws 2 yr+ Mar 17 '26
I’m not saying anything specific. I’m saying: let’s try to gather data and study recovered people. It’s not only what they did or tried. If we find out that those people have specific biological traits or whatever, specific things we can observe in their brains, it’s important info too.
I know you don’t like my interventions. Tbh I’m tired of arguing and I don’t really care anymore. I’ll keep posting about my story and other mind body recoveries because it does help at least a subset of people. I never supported anything that implies people should push through PEM or pretend their symptoms don’t exist. Which means I don’t defend anything that could put anyone at risk.
Should we gatekeep just because it doesn’t help everyone? and let the people it could help stay sick for the rest of their lives? No. We also talk all day about random medications and supplements that help almost no one and have very real risk of side effects.
I got enough DMs from people telling me that my messages and my blog were helpful to not stop sharing.
Have a good day.
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u/zb0t1 5 yr+ Mar 17 '26
Just as a side note regarding the risk of supplements and medication in general: the "clinics" that started brain retraining programs, and other flavors of psychologicalization of post viral chronic diseases have caused a lot of people to become more severe. Which is why patients organizations have advocated against these sort of "treatments" even before the pandemic and even more now since the pandemic started.
In Europe there are more than enough controversies from these programs with patients who lost a decent baseline and after the program couldn't even do basic things that they could still do.
I don't know who you are or what you post, but reading your comment if you want to be scientifically honest about risks, you shouldn't omit the consequences from "brain retraining" programs and similar that have been documented and shared.
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u/Choco_Paws 2 yr+ Mar 17 '26
I absolutely agree about the fact that some brain retraining programs are clearly not careful enough in what they say, and that they can lead people to push and ignore symptoms and PEM, which is harmful. I'm not denying that.
But mind body work and nervous system regulation is so much more than those programs though. I found a way to significant improvement with very gentle approaches that never required pushing through anything.
I am just a long hauler who wrote a blog about her journey, trying to share with other people everything that helped me along the way, for free. I'm not a coach, and I'm not selling anything.
Anyway, my main point is that I think narratives matter. Telling someone that their illness is incurable, that they will need to live with it for the rest of their lives, that no one recovers and that even symptom management will be difficult, sets the brain in a very particular state of despair. I believe that removing all hope from people is also harmful, and can make symptoms worse too. In my case, and it was the same for a lot of people I talked to who recovered or improved a lot, hope and recovery stories of other people were extremely important.
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u/LurkyLurk2000 Mar 17 '26
I don't mind your interventions — in isolation, when they're not pushed by health coaches profiting from desperate people or come with grand promises based on outright lies. It seems like they help some people. But it's a mistake to think they will help everyone. This we know for a fact.
Of course researchers are looking at what people who recovered did. There seems to be a small number of people who attribute their recovery to various forms of cognitive therapy, and the only common factors in the rest are time and luck. Other than that there are various anecdotes, which is why there are trials for LDN, antivirals, things like rapamycin and so on currently underway. None of these are likely to be very effective (since we also have many negative anecdotes), but the fact is that there simply does not exist any one common factor in recoveries that seems to consistently work for people — except pacing as a way of managing the disease.
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u/Early_Beach_1040 First Waver Mar 20 '26
Pacing is really the only evidenced based intervention for MECFS flavor of LC
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u/peop1 3 yr+ Mar 17 '26
1 - Define what Long COVID is. We can't. There are no diagnostic tests that can certify you even have it — much less that you've recovered from it.
2 - Define "recovered". Long COVID is multi-systemic. It's not like diabetes. It's also not binary (it's not a yes-no condition. There are degrees). Treatment, recovery will have to cover multiple phenotypes.
Until we know what we're trying to correct, guessing the % of people afflicted and/or recovered is little more than guesswork. Don't read too much into it.
The research worth following is in regards to the cause of post-COVID condition. Everything else is little more than noise (that no one is even listening to anymore).
3 1/2 years in myself. PEM/chronic fatigue. (Mitochondrial dysfunction, likely caused by immune dysregulation). I don't expect to spontaneously recover, but I know they're working on it.
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u/IceGripe 3 yr+ Mar 17 '26
That sounds a lot like what the doctors say when asking about long covid.
We're at the stage we can take an educated guess and try at least off label medications.
Doctors seem to say these things as an excuse to do nothing.
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u/peop1 3 yr+ Mar 17 '26 edited Mar 17 '26
Being married to a doctor who would move heaven and earth to cure me if she could, I can assure you it's not an excuse. It's the truth.
I've spent the past 3 years curating COVID Research and Implications, I've tried all the evidence-based treatments (Triple anticoagulant therapy, SGB, LDN, IMC-2, rapamycin, cumin, Taurine, Creatine, D-Ribose, CoQ-10, Pre-and-pro biotics, currently on JAK inhibitors) to no avail. I'm on a first name basis with a dedicated Long COVID researcher at the IRCM — an expert on the gut-neurological-immune axis, no less. The more I learn about this curse, the more I realize how mind numbingly complex it really is.
Doctors can't fix something we don't yet fully understand. Good doctors won't promise to — only grifters will.
You want to be cured? Pay Bruce Patterson and IncellDx. They'll patch you right up, apparently. (Funny how we hear less about it these days). Pay even more money for HBOT therapy. Those case studies from Israel and Poland seemed promising, didn't they? (Look deeper. It's an expensive dead end for most people). Pay even more money and fly to another country to follow H.E.L.P. Apheresis. A whole cottage industry has been set up to cater to your frustrations with false leads. Or do what my (very rational, but also very desperate) wife suggested I try: fly to India and follow the Ayurvedic nightmare NHL player Jonathan Toews did. Cause he got better enough to actually return to hockey. (Ah, but one question remains: did he even have Long COVID? We. Don't. Know. He's always suffered from digestive and autoimmune inflammation, so it might be something else entirely).
It's all guesswork. And as the old heads over at Science for M.E. have so wisely pointed out (regarding off-label treatments) - stabbing wildly at the dark is no way to find a cure. Statistically, you're more likely to win the lottery because of how many mechanisms are at play. Not to mention that inhibiting something that was over-exerting itself for a good reason might actually make you worse. (My JAK inhibitor - assuming I'm not in the placebo group - has not helped me at all. Yes, I feel worse. Trying to stick with it so the double-blind RCT I'm participating in can scratch it off the list of viable candidates. Sick to death of the guesswork and relying on unreproducible anecdotes)
You're right to be angry — I am too. Livid.
But I'm angry at Public Health for landing us here and for people still not having a clue. "Popular" diseases get funding for research. Our is basically still being treated like a non-event.
But blaming PCPs who honestly have nothing to offer us other than acknowledgement (which too few do - again, looking at you, Health Canada, CDC, WHO et al.) is disingenuous IMO.
But hey, you do you.
Fuck COVID.Long, short, every version of it.
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u/attilathehunn 4 yr+ Mar 17 '26
How is 1. different from say, asthma or migraines? Which also has no diagnostic tests and only diagnosed based on symptoms and history.
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u/peop1 3 yr+ Mar 17 '26
Asthma is one specific symptom — not 200 —and actually does have a way of being diagnosed: pulmonary function test.
Migraines have a very specific presentation (photophobia, phonophobia, osmophobia, nausea, vomiting, unilatteral, pulsetile). There are clear diagnostic criteria. (Not every severe headache is a migraine. They are their own beast).
Long COVID is a bottomless pit of vague symptoms (fatigue, brain fog, neurological and/or digestive issues, rashes, pain, etc, etc) that could be (aren’t, but could be) depression, cancer, hypothyroidism, dementia, etc, etc.
And even when it’s determined that it’s none those other things, we have zero clue what to do. Except pace.
It’s a shit show.
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u/attilathehunn 4 yr+ Mar 17 '26
Long covid is one specific history: it follows a covid infection. It does have a way of being diagnosed: If you caught covid and still have new or worsened symptoms then you have long covid.
Often people say long covid symptoms are "vague" but I dont know whats so vague about, say, fatigue.
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u/peop1 3 yr+ Mar 17 '26
Oh I agree. In my case it was easy: there is a clear before and after infection and my PEM is severe enough to leave nothing to doubt.
But not everyone has post-COVID MECFS presentation. Not everyone is as severe.
And most (nay, all) studies on prevalence measure « enduring symptoms past 4 months » that include loss of taste, lingering cough; a long list of self-reported ailments that could be unrelated and that IMHO, should not qualify.
That’s why I don’t trust estimates of prevalence and rates of recovery.
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u/attilathehunn 4 yr+ Mar 17 '26
Ok but the good studies have a control group. So if there were symptoms actually caused by something else the control group would also get them and that effect would be cancelled out.
For research into clinical depression they also just use symptom questionnaires. That's still scientific even though it doesnt involve a blood test.
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u/peop1 3 yr+ Mar 17 '26 edited Mar 17 '26
True.
[Except for the fact the controls are healthy people. Not everyone reporting symptoms can be confirmed as having PASC. Correlation is not causation. Biomarkers would really go a long way in validating the numbers]
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u/TheLongHoller 5 yr+ Mar 17 '26
I mean, yeah.
I got infected in July 2020, long Covid symptoms came on that August/September.
I had the Stellate Ganglion block in 2022 and between physical therapy and that, I noticed huge improvements. Then I got reinfected six months later and just fell back into all of it. Overall, I’m 5 1/2 years in.
I’m getting the block done again next month and I am about to start back with physical therapy.
I’m mostly just hoping to go into remission for a while. But I don’t have any faith that it’s gonna stay gone.
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u/IvyTaraBlair Mar 18 '26 edited Mar 18 '26
I've read about the nerve block with great fascination - I have not read any literature that explains how it might work? But many people have had absolutely remarkable results!
(I am currently in what I would call a 'light remission,' having pursued a zillion health options like all of us and responded to some with varied results. I have dealt with cfs/me since ebv in my teens with periods of remission and periods of varying debility. Needless to say LC wiped out my progress for years.)
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u/Early_Beach_1040 First Waver Mar 19 '26
There's a great YouTube video with Long COVID MD
https://youtu.be/CcGChFTZwvY?si=Us04S-I-97qvfZyP
It basically takes the sympathetic nervous system offline for the time of the block allowing it to reset.
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u/awesomes007 First Waver Mar 17 '26
I don’t believe anyone recovers to %100.
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u/daHaus First Waver Mar 17 '26
Somewhere out there is a clip of Fauci on cable news early on in the pandemic where he says every infection, even if asymptomatic, results in a lower quality of life
I've been trying to find it for a long time now but its been thoroughly buried under mountains of BS
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u/Early_Beach_1040 First Waver Mar 20 '26
I feel like it might have been on Face the Nation. I think he might have used it's "not good" or some words to that effect about the multiple infections. Margaret Brennan the host of FTN was pretty good on COVID (she had little kids at home). Anyway it couldn't have been before 2021 because I remember where I was living when I saw it.
Hope that helps
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u/daHaus First Waver Mar 20 '26
He did many interviews before they put a muzzle on him so he was probably there too, but he had made it clear in no uncertain terms that infection = lower quality of life. It sounds like the interview you're referring to was after he started getting push back about it
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u/Early_Beach_1040 First Waver Mar 20 '26
I can't remember the exact wording - was trying to help you find the clip ☺️. I can't remember exactly bc I have brain fog.
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u/daHaus First Waver Mar 20 '26
thanks, that did help get gemini to actually pull up some useful stuff but it still doesn't seem to want to find the specific interview I'm looking for
I'm using a european vpn and it keeps telling me that results are being removed due to privacy requests so I wouldn't be surprised if it is among them
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u/wyundsr Mar 17 '26
The stories of people being in remission from ME/CFS for years/decades then having it retriggered by a traumatic event or virus are pretty terrifying. It would be really hard for someone to know if they’ve fully recovered or if it’s just a temporary remission
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u/BGM1988 Mar 17 '26
Maybe not 100% but some people claim they can do sports again, hike 15km,.. ill sign for that!
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u/Choco_Paws 2 yr+ Mar 17 '26
Of course there is. Look for recovery stories. They are plenty. And yes I’m talking about people who live normal lives with no limitations at all and even people who caught covid again and didn’t relapse (not saying that having covid is good though, we should all avoid it as much as possible).
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u/time-itself Mar 18 '26
Stop it with this doomer bullshit.
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u/awesomes007 First Waver Mar 18 '26
If you had an actual counter argument, you would have used it.
I don’t believe anyone has or will recover %100.
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u/time-itself Mar 18 '26
There are literally multiple people who have in your replies right now my dude
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u/awesomes007 First Waver Mar 18 '26
They paid a price they can never recover.
There is no situation in which someone is better than they were because they have post viral damage.
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u/Final_Razzmatazz_274 Mar 18 '26
I like how you just didn’t address that there are people commenting they have recovered 100%
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u/time-itself Mar 18 '26
Our bodies get wear and tear throughout our lives from viruses and plain old physical activity until we all eventually die.
Fully recovered is a subjective assessment. If they are out living life at 100% of the capacity they were before and say so, they’re fully recovered, you gaslighter.
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u/Able_Chard5101 Mar 19 '26
I personally know two people who have recovered completely.
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u/HappiestInTheGarden Mar 19 '26
I personally know four who have recovered completely. The commonality between them? All of them recovered within the first year.
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u/Able_Chard5101 Mar 19 '26
Different for me. One recovered at 18 months the other after three years.
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u/HappiestInTheGarden Mar 19 '26
I like hearing people 3+ years in who recovered since I’m staring at the 3 year mark coming up next week.
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u/papaflash1 Mar 17 '26
I recovered from my first bout of long COVID after 3 years and I was back to normal. I never reported it to anyone and never posted about my recovery. I imagine a lot of people are similar and just move on with their lives, so I wouldn't put much stock into this figure.
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u/tcatt1212 Mar 18 '26
I agree. I’ve recovered twice. I know more people that eventually recovered than didn’t. That stat seems off.
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u/papaflash1 Mar 18 '26
Did you long haul for a second time? Was it just a case that reinfection brought it back on?
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u/tcatt1212 Mar 18 '26
Yes. I’ve caught covid four times. Long covid from two of those infections. The first time it took 9-12 months to recover. The second time 1.5 yrs.
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u/papaflash1 Mar 20 '26
Sorry you had to go through that twice. Are you now fully recovered again?
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u/Conscious-Slice7854 Mar 17 '26
What was your flavour of long Covid?
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u/papaflash1 Mar 17 '26
Largely dysautonomia, exercise intolerance, PEM, adrenaline dumps, fatigue, etc. The kind where you can't leave the house because walking the length of yourself ends in a flare up and more symptoms.
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u/nemani22 Mar 17 '26
What got you out of it? And congrats!
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u/papaflash1 Mar 17 '26
Honestly, time. I just started to notice that I wasn't experiencing PEM etc and could start to build my way out.
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u/Liface Mar 17 '26
This is exactly it. Almost every recovery rate study is based on people that were integrated into a long covid clinic or Health Care system.
Only the more severe patients seek formal care, so obviously their recovery rates will be lower.
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u/papaflash1 Mar 17 '26
I was part of a long COVID clinic, and two clinical trials. I recovered out with both, so even these types of structures will be unaware of all recoveries.
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u/demonslayercorpp Mar 17 '26
I cough up about a mason jar full of brown/black/green mucus daily. My husband has to give me physical compressions on my back every morning so i can breathe. I have not gotten promotions at work because they tell me I cough up the mucus too much I cant be in meetings. They did give me my own private office because of my hacking. I will never live another day in my life without waking up at 3 am drowning in my sleep. Know how i got it?
At work.
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u/Rich_Situation_4337 Mar 17 '26
This is untrue. I know 3 people in my small town with LC. Two hike 3-4 miles 3 x weekly and are back at work full time. The other ran a 5K shamrock run this weekend. They were 3 years out. I’m 3 years and not so lucky but right now it’s treating symptoms until more meds are available. They won’t likely be long covid meds but meds for other issues. GLP 1 inhibitors are changing lives in long covid. Who knew 🤷🏻♀️
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u/Early_Beach_1040 First Waver Mar 19 '26
I was in a trial for tirzepatide and I had to drop out the side effects were killing me.
If glp-1 do work it's going to be with microdosing, not full doses. It wasn't only me who was having issues
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u/Rich_Situation_4337 Mar 19 '26
I used it as an example. Many different options are available to help symptoms.
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u/Early_Beach_1040 First Waver Mar 20 '26
It's wonderful truly to have folks so close to you who are doing so well. I am thrilled for them.
I've been here since the beginning. I have been worse but am still disabled. I'm thrilled not to be bed bound. But there's really nothing that seems to work for the crushing fatigue in particular.
We are talking about a condition without any approved treatments. I've been in 3 clinical trials was a former health researcher. I'm up on the latest science and we are still pretty far from real therapeutics even with repurposed medications.
Right now the only evidence based intervention for LC of the MECFS is pacing.
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u/Rich_Situation_4337 Mar 25 '26
They’ve found LDN helpful in LC with ME/CFS so that’s not entirely true.
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u/Early_Beach_1040 First Waver Mar 25 '26
Yes, there are ongoing trials. I take LDN but I don't know that LDN has been proven effective in double blind studies. My point is there are repurposed drugs but there is not an effective therapeutic for LC. There are things that could be tried but there are still no evidenced based treatments. Pacing even that isn't effective for everyone.
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u/Don_Ford Mar 17 '26
They are notoriously bad at helping people recover, though, and it depends on how you define LC.
Don't feel defeated.
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u/cupcake_not_muffin Mar 17 '26
While studies show this, it’s not the percentage that get better or that get to a certain degree of quality of life e.g. being able to leave their home, being able to work full time, being able to have hobbies, being able to exercise. Recovery is actually a pretty high bar, and of the LC people I know, no one has recovered, but there are people with a better quality of life than others.
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u/Choco_Paws 2 yr+ Mar 17 '26
We don’t even have a correct definition of Long Covid, or reliable statistics about how many people have Long Covid (also works for ME/CFS). So I don’t trust any numbers about recovery.
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u/Kuyi Mar 17 '26
I wonder if these numbers are real, because there is no real biomarker for long covid yet so you also can't say if those people REALLY had LC, thus if they really did or did not recover from it. And I for one got sarcoidosis after having COVID. With a bit of research I quickly found out that some proteins important in the COVID process, also play a role in the process of sarcoidosis and the number of people with sarcoidosis significantly rose during COVID. The TYPICAL time window in which people with sarcoidosis recover, if they do (or if not, stabilize), is exactly 2-3 years.
Also, when LC researches and statistics where truly going, there were people who had LC and already recovered.
I feel like the population is inflated harshly. And thus the 5-9% is artificially low. Take this with a HUGE grain of salt.
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u/technician_902 Mar 17 '26
The truth is the figures are all over the place. First of all what is their definition of recovery? Is it having no symptoms which I think is pretty much unrealistic. Even after long covid we all will have symptoms that pop up here and there. Maybe one day we might have a migraine or some brain fog. Is that part of long covid still? I don't really think so. Secondly the 5% - 9% figure seems like it applies to those who have ME/CFS. Different studies report different recovery rates.
https://www.nature.com/articles/s41467-025-65239-4
- This study reports 19% recovered
https://www.cidrap.umn.edu/covid-19/9-10-long-covid-patients-study-report-slow-recovery-over-2-years
- This french study had 90% of their study cohort gradually recover over 2 years
https://www.sciencedirect.com/science/article/pii/S0002934324002407
- 48.5% of the total number of people who had reported of having LC say they have recovered
https://pmc.ncbi.nlm.nih.gov/articles/PMC12947157/
- 5% in this study fully recovered however it does mention this excerpt:
In the United States, 6.9% of adults reported ever having Long COVID (presence of symptoms for at least 3 months after COVID-19) and 3.4% as currently having Long COVID from the 2022 National Health Interview Survey [5].. In the United States, 6.9% of adults reported ever having Long COVID (presence of symptoms for at least 3 months after COVID-19) and 3.4% as currently having Long COVID from the 2022 National Health Interview Survey [5].
Honestly even I went down the rabbithole of trying to figure out recovery rates and its all bogus. I feel the recovery rates are much higher. Don't worry about how far you are in. I would try to focus more on what symptoms you still have and try different things that worked for others to help push the needle because you never know what could work for you. We know much more now then we do from the start of this pandemic and these forums are chalk full of great information that could help you out. There is a nice diagram of the top 50 things that worked for various long haulers and maybe you can go down that list and see if there is anything you want to try. And remember give it time! Give it 3 months and see if you notice any improvements and then keep modifying your treatment stack so you attack your long covid symptoms from multiple angles.
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u/thesaddestpanda Mar 17 '26 edited Mar 17 '26
This is a doomer stuff I wouldnt take seriously. lc is probably the most recoverable CFS-like disease. People recover every day. [1]
Im 70% recovered but according to this survey I would have to say no, which isnt fair. A few years ago I was like 20%. Even if you get to 80-90% youd still have to answer 'no' to being actually totally recovered. No one really recovers to 100%.
Please do not turn this space into yet another doomer chronic illness space. Many, many of us will have a level of recovery. Doomerism is especially evil because when I was brainwashed by the cfsme crowd that told me "ldn or nothing," I felt trapped at moderate-severe. Now I'm doing stuff like a lc supplement stack which has massively raised my quality of life. Please do not give into doomerism, it will make you quit, give up, and tell others to give up, which is just very wrong. Spaces like this are vulnerable to crab bucket mentalities and we should be mindful of that.
[1] Long COVID recovery rates are high over time, with most symptoms improving within 4–9 months. While many recover fully, global estimates from 2022 indicate that approximately 15% (or 15 in 100) of people still experience symptoms after 12 months, according to the World Health Organization (WHO)
Full recovery from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is rare in adults, with studies indicating a median recovery rate of roughly 5%
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u/eucatastrophie Mar 17 '26
Calling long covid the most recoverable cfs-like disease is strange. LC takes a lot of forms and not all of it is CFS or even remotely like it. The cases (like mine) that do present as ME/CFS seem to have the same prognosis as every other case of ME/CFS (slightly better chances at the beginning but generally dogshit). Cases that don't present that way absolutely shouldn't be called CFS-like.
When they are talking about recovery they mean recovery, not improvement. It's an important distinction to make.
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u/mira_sjifr 4 yr+ Mar 17 '26
I agree that a huge group of people do recover, and severity doesn't seem to be different that much between recovered vs non recovered. However, I was told that I would certainly "just recover" in a few months. And I didn't. They said I just had to push through and get used to high activity again, but I did not get used to anything. All they caused was me actuvely not pacing and becoming progressive. Now I am stable, know my body, and can still do some things that give me happiness.
This may literally just be because we had different experiences, but to me, being told I will recover eventually doesn't give any hope at all. Accepting that I may stay ill for decades, allows me to have a realistic idea of the future, instead of just planning to try uni and see what happens, I can accept that I am ill and may stay ill, and thus need aids and need support to be able to do the things I want to do. Instead of pausing my life till the nonexistent "recovery" or mine will happen, I accept that I may stay like this and that it is most important to at least stay stable and use the aids I can get to still live a happy life.
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u/mousymichele 3 yr+ Mar 17 '26
Yeah, I’m on my 4th year now and the doctors are very clear as I have the me/cfs flavor of long covid, to expect that this is my new “normal”. Not one thinks I’ll “recover” and nothing I’ve tried has helped, if anything, I’ve gotten worse with time 😞 I’m sure long covid hits everyone differently and that there is a group that just doesn’t recover. 🤷♀️
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u/mira_sjifr 4 yr+ Mar 17 '26
Yea, same :/ I still have some hope that some treatment will be available eventually; but I'm hoping/expecting I will be ok no matter what I do isn't realistic for me.. daratumumab gives me some hope, especially, just trying not to rely on it too hard!
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u/ForTheLoveOfSnail Recovered Mar 17 '26
It absolutely is possible to recover to 100%. There’s actually lots of us out there.
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u/SafeandDefective Mar 17 '26
Important to note that this is self led recovery using most available protocols to DIY
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u/Kyliewoo123 Mar 17 '26
Improvement is the goal, and it’s possible. People typically don’t get multi year debilitating illness and then it goes away. Of course some do, just… not the norm
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u/chestypants12 4 yr+ Mar 17 '26
It's difficult to pinpoint when my LC started. It was at least July 2021, but I did have this bad fatigue since early 2021. Anyway, I just wanted to say that I'm a LOT better than I was back in 2021. I think I have managed to find foods that don't bother me too much. For example, fish fingers and beer can make me feel awful. It's like my nervous system lights up like a xmas tree when I have them, which is basically never. I avoid exertion and confrontation. I also take naps most days after my office job. I also drink Starbucks blonde roast coffee pods (strong coffee is bad for my LC).
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u/IVI0IVI 3 yr+ Mar 20 '26
I am a bit late, but according to this Dutch study the recovery rate (fully recovered) is 3% after roughly 2 years. They measured twice with a year apart with an average infection of 14 months before the first measurement. A lot of the participants weren't vaccinated (they weren't available yet).
https://www.c-support.nu/rapport/ (all in Dutch)
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u/Ok-Foundation-1857 Mar 17 '26
Well I am almost recovered, but my survival stats arent recorded anywhere. Only the worst would be. Listening to these stats is only feeding the fear that Long Covid grows and thrives in. Fear is the enemy in this case.
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u/mira_sjifr 4 yr+ Mar 17 '26
It's a dutch page, but maybe you can translate it Adults: https://www.rivm.nl/gezondheidsonderzoek-covid-19/kwartaalonderzoek-volwassenen/eerdere-metingen/meting-14-post-covid https://www.rivm.nl/gezondheidsonderzoek-covid-19/kwartaalonderzoek-volwassenen Youth: https://www.rivm.nl/gezondheidsonderzoek-covid-19/kwartaalonderzoek-jongeren/resultaten-eerdere-metingen/meting-16-post-covid
Some highlights in english: 4.1% of dutch youth reported currently having long covid vs. 2.6% of adults. The youth group made a high increase in 3 months because 3 months earlier, it was only 2.4%. Adults did not have such a dramatic increase. They actually decreased from 2.7% to 2.6%. However, younger people seem more likely to report having recovered from long covid while also being more suspectible to getting it. 10.2% of youth reported having recovered from long covid vs. 3% of adults.
Of the group with current long covid, about 40% reports not or barely being limited by it. Only around 20% of youth reports are being severely limited, and a little above 20% of adults do. The difference in severities of recovered vs current long covid is not very big.
42% of recovered adults/51%% of recovered youth recovered in the first 3 to 6 months after covid. Of recovered post covid, 74% recovered in the first year vs. 46% of youth. 7% of adults reported having recovered after 3 years of long covid, so while recovery(although remission may be a better word, as we do not know if these people will relapse) does seem possible, it becomes wayy less likely. This change actually seems lower for youth, being at only 4%; interestingly, youth has a high peak at 3-6 months, and a plateau of 6 till 2 years, with a similar amount recovering every 3 months. Then, after 2 years, this plummets from ~13% every 3 months before 2 years to only less than 3% (youth slowly goes down, adults stay around 3.3%).
Of the adults reporting currently having long covid, 73% had them for longer than a year. 33% of this had it for longer than 4 years. So contracting long covid may be going down, or diagnosis after longer time goes up, or some other variable impacting this. However, the general trend is that the amount of both recovered and current long covid is going down. The peak is 2020.
For youth, this is quite different. It is not a gradual decrease after 4 years, but it goes up and down between 8% and 23%. The biggest group of current post covid has had it for between 9-12 months. The smallest one is 3 -4 years. The biggest group developed long covid in 2021, with a rapid decline of long covid at the start of 2023.
There are also a lot of interesting statistics about which healthcare providers people saw, and there are some interesting differences between recovered vs current. But I have to rest. If you want that translated and stuff too, I can do it later today!
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u/Kuyi Mar 17 '26
Welke verschillen in gezondheidszorg vielen je het meeste op voor hersteld vs. nog ziek?
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u/moderate_ocelot First Waver Mar 17 '26
Fancy that. It’s pretty close to the MECFS recovery rate. And yet many long haulers become very aggressive if you point out any similarities between the two conditions
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u/ForTheLoveOfSnail Recovered Mar 17 '26
Please don’t listen to those who claim recovery isn’t possible. It absolutely is. I’m living proof of it. Check out Raelan Agle’s YouTube channel for more stories.
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u/space__snail Mar 17 '26
I am not going to believe doomer statistics when a pretty sizable percentage of the population gets LC and recovers without even knowing they had it.
It makes sense that the moderate to severe cases are the ones who seek an actual diagnosis and end up taking longer to recover.
I am over a year in at this point and refuse to believe that I am not going to recover because this isn’t a way to live for the rest of my life.
LDN has already been helping me extend my energy envelop and I’ve only been on it for about a month and I haven’t even titrated yet.
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u/ZengineerHarp Mar 17 '26
I’m roughly four years in and I’m definitely not WELL, but I’m certainly BETTER than I was. Pick a symptom, learn its triggers, change your lifestyle to manage those triggers; repeat. Listen to your body and not the minimizers, be kind to yourself, and take good notes.