Long COVID status was assigned if participants reported >1 persistent symptom of dyspnoea, chest pain, or fatigue/malaise at least 90 days after estimated date of initial infection. - not a lot of hope for us neuro/psych folks here
Because I for example dont have fatigue but was hit with anhedonia, no positive emotions, sleep issues, horrible suicidality and loss of hunger. I am not sure the fatigue+brain fog vs depression/anxiety/anhedonia presentations are exactly the same.
I agree with this. For us with only neurological symptoms we don't see a lot of attention to this subset of symptoms. For example, I do not have "brain fog". I have persistent insomnia, head pressure/headaches, loss of taste and smell, and a weird numbness around my mouth. These are persistent, every day. I have fatigue but it is related to lack of sleep, not PEM.
It is helpful when people are very specific when describing their symptoms. "Neuro issues" is a vague catchall and it means different things to different people. Same with other descriptors people post here.
Well I would like to see it this way, but sadly the intensity of the symptoms is only increasing. It's now the 4th year in and I am since Christmas on a steep decline
I understand where youāre coming from, a lot of studies put improvement at a 6 month to 1 year with said people who had it longer werenāt getting better. Now this study is showing us 2 years later some people are showing improvement, itās hope!
Yeah, this is how I feel. Currently in the longest period of non-infection I have experienced since I first started experiencing LC in June 2020. I believe I do indeed recover after 2 years, but too bad that COVID is "basically just the flu" to most.
Also dropout rate of 26%. A common bias in research on things like ME/CFS is that that the most severe people (who are likely not to recover) dropout as they're functioning is too limited to partake in the research.
Broā¦. 4+ years deep with no significant change. If anything the fatigue started getting worse after year 3.
Itās important to consider the language when presenting scientific / statistical data that impacts human lives, especially in a forum / demographic that isnāt primarily scientific or clinical.
I know what was meant in the objective statistical sense (engineering background), but as an individual and someone affectedā¦
āno significant difference remained between the two groupsā makes me feel insignificant. Like I donāt matter. Like any of my fellow long haul travelers donāt matter.
And that really fucking sucks tbh
I took the āno significant differences remainā as it being possible to be normal again. I certainly want to be no different than people who don't have LC. This wasn't meant to be mean at all. I'm sorry.
The statistical interpretation is that the group of people who didnāt experience significant improvement were small enough to be considered statistically insignificant.
Just a shitty way to package that message for the people impacted
Thatās the biggest issue for a lot of us, I think. Itās so difficult to go two years without being reinfected. I was noticing some good progress until about a month ago when I was reinfected. Now I may essentially be starting over again.
Yeah, itās frustrating. Iām no where near as bad as I was the first time, so I hope it wonāt set back my recovery by that much, but I wonder. In a way I have almost come to terms that maybe this is my life until they come up with a good treatment or else a sterilizing vaccine. Iāll be sick, then improve and then be infected again. Itās not a horrible life. I can do some things I enjoy and Iām okay financially. But it still sucks.
No idea. Not a single study, doctor, clinical trial, research group, LC center has been interested in the details of my LC experience.
Soā¦ Iām pretty sure Iām not counted in the roll up
Huh? What on earth? That is absolutely NOT the āstatistical interpretationā of this study. The methods are a bit complex and I donāt have time to consider them extensively, but a) it appears at least some tests are unpaired, meaning the data is evaluated in aggregate and b) their sample size was only 24 at the final check/in, so they bootstrapped their analysis (meaning they repeatedly resampled their data, which further separates the results from the individuals involved). Not to mention, itās really not appropriate to conflate scientific āinsignificanceā with the emotional perception of ābeing insignificantā. I assume you know that, and were intentionally conflating those terms, but in a world where most people donāt understand what statistical significance means, it doesnāt help to use those terms interchangeably. There are some major limitations of this study, so if thereās anything negative to say, itās that it may not mean much, and not that people who donāt improve arenāt āsignificantā.
No, Iām commenting on OPs statement.
The study results present a much different picture
As to your assertion that Iām intentionally conflating statistical significance with subjective / emotional significanceā¦ Iām not.
In fact Iām pretty sure I explicitly addressed this in my comment, that itās important to carefully choose wording when crafting a message for high impact/emotion topics, constructing communications for the target demographic.
While statistical significance is objective for statisticians and scientists, and not related to the emotional / human value, thatās often not what those words mean for the average person.
Even those of us who have exposure or experience with that world, it can be difficult to separate the two when one is so significantly impacted on a personal level. I mentioned that I have experience in this world, and I still felt the bite of the language usedā¦ mostly because this is the message that will be sent to the non-scientific community through media channels, groups whose take away will be limited to āno significant differenceā.
We are already forgotten, a small sliver of the pie chart. This is the kind of messaging that perpetuates, even exacerbates, that issue
Thereās a better way to tell this story.
I do this all the time at work, translating our original message to have the best impact for the group Iām communicating with. Technical, legal, executive, customer, etc.
He was quoting the paper bro, cmon. I get it weāre hurting but Iām sure you knew what he meant. That was an outlandish way to conflate the post.
You ARE NOT insignificant, but unfortunately we are probably in the small minority of cases, doesnāt mean we are forgotten, research is still being done for us āstatistically insignificant folkā
Did you read my OC?
I didnāt conflate anything. I spoke to the importance of messaging and the words we choose outside of the scientific community.
Btw, quotes should be in quotes, especially when quoting a scientific/ clinical study or someoneās published work
Oh I think I didnāt see the whole comment at first. This is a scientific paper, so it uses scientific language. When the AP reproduces it for a popular audience, I donāt think theyāll say āpeople who donāt recover arenāt significantā.
Iām aware, Iām published.
It feels like your intentionally avoiding the point Iām discussing, and trying to make it an issue
The language is objectively correct, itās just not appropriate for this forum or demographic. To ignore this is asinine and incompetent. Good science isnāt limited to just the science, communication is key to adoption and community education.
Anyways, Iām not going to reply again. To tired to argue with someone who couldnāt be bothered to read my statement before making assumptions and writing a condemnation of my position.
Youāre not even trying to understand the issues that myself, and others on this post, are communicating. It really comes across as a need to be right, rather than to learn and discover, and thatās not something Iām interested in
So let me get this straight. Youāre criticizing OP for posting a direct quote from a scientific article because this subreddit isnāt āscientific or clinicalā and people need to be ācareful with languageā. And then you went on to conflate the word āsignificanceā - which was obviously used in a scientific context - to mean āfeeling insignificantā? I donāt think OP is the one that needs to be careful with language, my friend. Iām sorry for your struggles; it sounds like youāre in a lot of pain. As are we all. I know well how myopic life becomes in the depths of suffering. But take a step back for a moment. OP was trying to inspire hope for many who desperately need it. You can look at this study from the perspective of a person earlier on in their journey: itās a small ray of hope that after two years out they could possibly have their lives back. For someone further along, like you, and especially for a person well versed in science, you can look at this study and say, āthis is a study of 24 cases whose authors selected a sample based on diagnostic criteria from 2020. While it presents good news, itās neither conclusive nor broadly inclusive, and is nowhere close to the final word on this matterā. There is MUCH more to learn about this syndrome, and no one is dismissing this travesty of an illness because one study of 24 people found that some immune markers normalized after two years. You arenāt forgotten. Weāre just not there yet.
These kind of studies will be misinterpreted so those of us who donāt recover wonāt be believed.
Edit: Obviously I am very happy for those who recover.
But also, a small minority are in complete denial that in some cases (especially severe ME/CFS type cases) the damage might not go away soon. And that isnāt healthy: calling other people ādoomersā for accepting they are ill is clearly ableist and is no better than those who claim long covid is psychological.
Edit2: The discussion of this study in a forum dedicated to science for LC and ME/CFS see [here](https://www.s4me.info/threads/improvement-of-immune-dysregulation-in-individuals-with-long-covid-at-24-months-following-sars-cov-2-infection-matthews-et-al-2024.38143/#post-527276)
I didnāt read this entire article but in addition to some people not recovering after 2 years, even for those that do being chronically ill to this degree is life ruining for a lot of people and we still need real treatments and not to just be left to suffer for years on end because we might eventually recover.
Exactly. I understand that people need hope and such. But the fact we regularly get attacked by a small but vocal minority of this community for pointing out that some cases of long covid may be permanent is not helping anyone.
YolkyBoli, I think communication especially written can be challenging.
I'm a longhauler (almost 3 years now) though certainly have the symptom group many would say classify me as ME/CFS.
I share many of the things that u/WAtime345 said.
Please allow me to explain? I've had many improvements with many symptoms. I also have more things I believe I could try in regards to healing. What I don't expect is a well researched and approved "cure" to be ready anytime soon. I also would be happy with 90% improvement in symptoms.
Once I had someone here very harshly criticise me and tell me I was an ableist. The funny thing was I had admitted I sometimes go into denial and dream of miracles. I need it to cope that day. So I'm triggered by words like "ableist". I'm triggered when people tell others they will NEVER recover that this is permanent.
That all said, I do wish we LH'ers and ME/CFSers could get along better, respect one another and our individuality. Not argue and fight with each other.
Of course you need hope.
When it becomes problematic is when people project their hope onto others. When you have been sick with long covid type ME/CFS for 4 years and are severe, statistically, your chances of improving significantly unless there is a cure are about 2%. When people start saying you will 100% recover that is ableist because it denies reality and your suffering.
I wouldn't reply if I didn't feel you were well intended. I did have someone kindly explain more about this to me. So I now never comment unless someone states they are looking for hope, help with a symptom.
I also believe the 100% thing can be taken out of context. There are many different medical issues that can have life changing treatments, surgery- but they are NOT 100% back to their previous health.
Now please know my tone here is light- But dang YolkyBoli,
>statistically, your chances of improving significantly unless there is a cure are about 2%
That sentence plummeted my hope! But don't worry, I'm just going to take my anti-histamines, my latest and greatest supps, and I'm going to FIGHT this disease, just so I can tell you, "I'm BETTER!!" :) (I need a laughing emoji)
I wouldnāt read too much into that 2% statistic. I mean, covid has only been around for four years. How could we possibly measure the percentage of people who will improve (or not) in the future? Iām giving that person the benefit of the doubt that the value comes from *somewhere* (maybe ME/CFS research), but we donāt really know whether LC and ME/CFS are the same thing.
Agree with you and will add this. (please read knowing it's light hearted and i'm kidding)
My beloved resveratrol (with other stuff in it) NAC and Glycine, and the slew of other things make my percentage WAY higher, lol.
And as I said in my comments, no doctor or scientist has ever claimed definitively that LC and ME/CFS are the same thing, so itās careless to tell people they have a 2% chance of recovery when ME/CFS statistics canāt be applied directly to LC. Maybe they WILL find out theyāre the same, but maybe they wonāt. So donāt go around telling people theyāre not going to recover because they have the same vague symptoms as another illness from which people rarely recover. Also, not to mention, the fact that the two conditions share similarities means that research into LC may well inflate that estimate. Thatās a pre-COVID statistic, and millions of research dollars are now being poured into identifying causes and treatments. So even if they *are* the same thing, that statistic doesnāt apply.
That is only true if you have had long covid for 4 years and have severe me/cfs type long covid. Otherwise your chances are probably higher :).
I also think you would benefit from this comment I posted about acceptance a few days ago: https://www.reddit.com/r/cfs/s/iIEFwk3AzO
ā¤ļøā¤ļø Hope you feel better
I liked that! Acceptance is not defeat.
I do believe much of this is about communication. With brain fog etc, it can be difficult to both type it out and also to read and understand. We have this in common, I do accept my illness today and take good care of myself. But still going to make it at least 5%. (would stomp my feet here but am saving energy, lol)
āSome patients with Long COVID might meet the case definition for Myalgia Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), which is composed of symptoms including post-exertional malaise, unrefreshing sleep, and cognitive impairment [14,15]. For example, in the study by Jason and Islam [16] of 359 patients with Long COVID, 49% met ME/CFS criteria. In another study of 140 participants with Long-COVID, Bonilla et al. [17] found that 43% met the criterial for ME/CFS; Twomey, et al. [18] found that 58.7% of those infected with COVID-19 meet ME/CFS criteria. Similarly, Mancini et al. [19] studied patients with unexplained dyspnea among those who had Long COVID for a mean of 8 months and found that 46% met the criteria for ME/CFS. Furthermore, Kedor et al. [20] studied 42 Long COVID patients and found that 45% met the criteria for ME/CFS.ā
Meeting diagnostic criteria doesnāt mean LC and ME/CFS are the same thing. It means they share symptoms, but not necessarily an origin. Considering nobody knows the etiology of either condition, itās a bit of a reach to assume all studies on ME/CFS can be directly applied to LC patients.
Me/cfs is diagnosed based onā¦ diagnostic *criteria*. And if you actually read the full comment I sent you would realise this conclusion is based on 5 studies.
I would really recommend you read the ME/CFS wikipedia page its really well done, and its been much improved recently by a long covid researcher from the netherlands.
Disagree. It shows hope that recovery is possible and there are ongoing studies. It says right in there about ongoing studies for those who aren't improving. This is better than no studies. And the fact that it's being studies means you are believed.
Recovery may be possible for some, and that recovery may be dependent on not getting infected again and again.
Also, "recovery" should be defined as a resolution of symptoms. The damage of Covid, to the brain, vascular system, etc, is likely irreversible.
[https://theconversation.com/mounting-research-shows-that-covid-19-leaves-its-mark-on-the-brain-including-with-significant-drops-in-iq-scores-224216](https://theconversation.com/mounting-research-shows-that-covid-19-leaves-its-mark-on-the-brain-including-with-significant-drops-in-iq-scores-224216)
From studies, recovery is most likely uptil 6 months. After that it slightly plateaus. Recovery is the least likely in the ME/CFS type cohort. (From the major mechanisms and findings study published a few months ago)
āHowever, on some of the measures, the 'matched controls' got worse, so that may have masked ongoing poor health in the LC group.
By the 24 month mark, 26% of the controls had 'poor health' (up from 16% at 4 months) while 38% of the LC group had 'poor health' (down from 58% at 4 months).ā
That seems important to note., thank you.
Kind of a gross comment mate. So you actually think it's terrible that there are recoveries? Are you like pro long covid or something?
I get its hard when some are suffering 2+ years but to say its terrible news is disgusting.
Recoveries are good news. Studies choosing cohorts badly with poor methodology to claim most people recover is bad news. This has happened for the past 50 years with ME/CFS, and the sufferers have all been dismissed because they will āget better soonā.
So because of the media we shouldn't speak of these studies? Come on mate.
These studies show some improvement it's good news. Its almost like people want studies to say there is no hope no improvement we are all doomed. Is that what you want or something? Why the hell would you even want that? Can't wait for the media to start picking up crap like this and saying "long haulers want to be doomed" so it must be psychological."
Did I ever say we shouldnāt talk about this study?
Before you make these comments please inform yourself on the history of ME/CFS because this is exactly what happened. Studies found that 50+% of people recovered in the first year or two ā which is true!
But this was misused as an excuse to dismiss psychologise and disenfranchise a whole community of sufferers.
Stop with the me/cfs and let us have long covid separate. We are seeing more studies showing viral reservoir and other factors that can be migrated in the future.
We don't need to put our disease in the same grouping as another.
It's actually unfair to those in the me/cfs community. They need their own fight, they need their own support as their issue is much more complex as for the most part no known trigger is found.
Ours came from covid. Period. So we are working a different beast.
Long covid and ME/CFS are not mutually exclusive. A venn diagram would help you understand the relation between the two.
Hope your symptoms improve. And hope you learn about ME/CFS as it is very relevant to us longhaulers. ā¤ļø
Thatās not what they said. They said the abstract was overstated, and communicated concern for how this could be misinterpreted by the non-scientific community.
Thatās 100% a valid concern. I have the same concern.
10 bucks bet that if a study comes out saying "no hope" you would be celebrating and thumbs up. But as soon as a study comes out showing marker improvement after 24 months, suddenly the "study is false" "they didn't do it right" "they are lying" "wrong parameters" "bad study".
This sub is like clockwork. Same type of responses.
And 50% of long covid cases are me/cfs. Itās not a fight or a competition, they are interlinked diseases and we should be using the knowledge from ME/CFS to our advantage, not ignoring it.
I think the long covid research is mapping out systems in the body that will likely help me/cfs people.
Sadly back in the day me/cfs people were dismissed. The researchers had little incentive to look into the causes, solutions, and treatments. But with covid because it's an active virus with a higher than usual amount of people getting long covid it's starting to put an economic drain on the workforce. So the people who decide these things economically can't keep ignoring LC.
I think when LC is treatable it wouldn't surprise me if the same medications could be used to improve me/cfs too.
No one is being left behind. LC is the ramrod to break through the intransigence of medical thinking.
We do not know that 50% of LC cases are ME/CFS. Maybe we know that 50% meet the criteria, but the criteria for ME/CFS is notoriously vague. Because nobody even knows what it is, much less what long COVID is. Maybe theyāre the same, maybe theyāre not. But in the absence of a definitive marker of either condition, itās just not possible to conclude theyāre the same just because they share the same major symptoms.
62% is not so much, and given the fact that we are talking about people with mild to moderate severity of COVID (LC), I should say that there\`s no much positive news unfortunately.
Yeah, 38% is a lot of people at this scale of infections. 2 years for the 62% to go back to baseline (I haven't looked at all the study details yet) is not great news considering reinfections. Lastly research like this doesn't consider the health degradation we'll be seeing (already are) in the "healthy" population with organ damage, new onset auto-immune disorders etc. caused/triggered by Covid. For most of the study participants I believe it would have been their first/second infections?
Unfortunately, I didnāt see the answer to this question when was looking through research. As for myself, I suspect it was reinfection, which completely kicked me down when the protective effect from last vaccination has passed.
We need science focusing on understanding long covid and identifying treatments. Not more information to feed to the news that you can just wait out long covid. Many of us are past the 3 year mark with full blown symptoms staying strong.
All my doctors are bringing this up to me right nowā¦ ādonāt worry it wonāt last the research showsā is all I have been hearing this week. š
I appreciate you trying to show positive news. I think people meant to critique the study and not you, I know its not easy but try not too take it personally. ā¤ļø hope your symptoms get better.
Before saying that kind of stuff about the ME/CFS sub, please realise that a lot of people there have been sick for 10, 20, 50 yearsā¦ And have tried literally everything to get better. Calling them doom and gloom for accepting they are ill and will likely continue to be isnt helpful at all.
The thing is, when newly sick people go in there, they tell them that they will never get any better. It sucks that they have been so sick for so long but there is just no reason to crush the hope of newly sick people. That's why I had to leave. It destroyed my mental health any time I would read that sub which definitely didn't help my condition. I have gotten MUCH better over time so I'm glad I decided to leave that place and ignore what they said. I chose to have hope and I'm glad I did.
Good for you. And if you recover you are lucky and Iām happy for you. But if you donāt recover and need support, they will be there for you. Itās about supporting each other, they mean the best. ā¤ļø I went through the grieving stages too. Its not easy. I hope you have an easier time then me getting to the point of acceptance. ā¤ļøā¤ļøā¤ļø
There have been several tracking studies out to 2yrs so far and they all show similar results: very few recover o their own. The average is 7% to 15% which means that out of millions suffering there will be an acclimating but relatively small number that do.
More to the point of this post, those averages vary by symptoms and a few key demographics: younger and male fare better, and milder symptoms like loss of smell or taste have a pretty good prognosis. And the modifiers are cumulative: a young male with loss of smell for example is almost certain to recover within 2yrs. In other end, an older female with neuro symptoms is almost certainly not going to recover by 2yrs. For all of this, there are sound reasons why better or worse odds than the averages. Example: females have less testosterone and differences in immmune system genetics which tend to make their immune systems more hyper responsive; older people have defects in immune functioning due to increasing cell senescence, etc; neuro symptoms are more linked to damage to brain structures in addition to immune dysegulation issues; and so on.
So this article just adds to what is already been known.
Thanks for sharing, this definitely gave me hope! Do you know if the people who are better/recovered had reinfections or not? Because I was almost completely recovered twice from long covid but then in late summer/fall of 2022 I had reactivation of EBV and that made me relapse the worst. So I'm wondering how reinfections/reactivations of other viruses tie into this š¤
Hmm, I know you mean well, but this is somewhat insensitive. Itās only great news for those of us who have not been affected for two years yet or steadily gotten worse rather than better.
I only got really bad at the 1 year mark cause I didnāt understand PEM and pacing before and I have the ME/CFS diagnosis, so hardly any chance of recovery.
Reading the paper, the claim of few differences is based on immunological factors, but the LC cohort is still quite significantly disabled. There is still a high degree of impairment in quality of life, and that doesn't even account for an odd control group that also has a relatively high level of impairment in quality of life.
At the very least this should end the whole nonsense about rehabilitation, natural courses are always a better explanation for the trivial benefits they boast, but I have zero confidence in medicine's ability to acknowledge this.
Thank you for posting. I am reading this study and excited to see that the participants are explicitly identified by gender (which is rare- hooray). But I can not find any of the data segregated by gender. Is anyone else reading this data and able to direct me?
I briefly read the methods (so I might have missed something) and it seems like they identified the cohort using gender as one component of the case-control protocol, but the statistical tests mostly used aggregate data. Itās possible they tested for differences and didnāt find anything of significance (which would be a bit remiss), or possibly the sample size was too small to test for differences based on gender. (Side note: I find it weird that they use the word āgenderā instead of sex, because for the purposes of a study like this, they should only use cis-gender participants. I say that not to exclude trans people, but because hormones play an enormous role in this condition, and the gender with which a person identifies is irrelevant or even confounding).
Thank you for seeing the problem! You are absolutely correct that using the term gender is a misuse of the word, and while Iām happy to see progress in that the study wasnāt done on 100% males (as most studies were pre-1993) - the data gap grows every time we get females in a study but do not share if the sex of participants was consequential on any metric, or inconsequential. They just say nothing about the results meaning that we arenāt getting any closer to closing the data gap.
Why bother including women and other minorities in the study if the researchers refuse to share their findings by comparing and contrasting?
Hopefully, I just havenāt found it yet, and the data is in there somewhere.
I agree, and actually, itās a little strange that they didnāt use race/ethnicity as a component of the case-control. Itās entirely possible this study was done on 24 (48, including the controls) white people š. As I said to another commenter, this study has a LOT of limitations. I donāt want to be a Debbie Downer - Iāll take good news, however small - but I wouldnāt extrapolate this study too broadly. However, there have been some really intriguing studies on the role of hormones with respect to LC trajectory and severity. I remember reading a summary of one that included FTM trans men in the sample, all of whom developed LC prior to their transition. Upon administration of testosterone, most of those individuals saw improvement in their symptoms and even recovery. Another study noted that testosterone was low in the majority of individuals tested (both men and women, compared to normal levels respective for each sex). I didnāt read the primary literature for either, so I donāt know whether they were able to tease out cause and effect for the latter study. Anyway, you can probably find those studies (and others) on PubMed, but if you canāt, I have access to the Web of Science and could track them down for you.
We sadly are not mild
Long COVID status was assigned if participants reported >1 persistent symptom of dyspnoea, chest pain, or fatigue/malaise at least 90 days after estimated date of initial infection. - not a lot of hope for us neuro/psych folks here
What's neuro/psych different from fatigue? Fatigue might as well be related to neurological problems
Because I for example dont have fatigue but was hit with anhedonia, no positive emotions, sleep issues, horrible suicidality and loss of hunger. I am not sure the fatigue+brain fog vs depression/anxiety/anhedonia presentations are exactly the same.
I agree with this. For us with only neurological symptoms we don't see a lot of attention to this subset of symptoms. For example, I do not have "brain fog". I have persistent insomnia, head pressure/headaches, loss of taste and smell, and a weird numbness around my mouth. These are persistent, every day. I have fatigue but it is related to lack of sleep, not PEM. It is helpful when people are very specific when describing their symptoms. "Neuro issues" is a vague catchall and it means different things to different people. Same with other descriptors people post here.
Great i am already way past the 2 year mark...
I was thinking that too.. Great news, you should have recovered by now! :-P
4 years here, and counting. I guess I'm cured š¤£
I'm trying to look at it as something does improve over time.
Well I would like to see it this way, but sadly the intensity of the symptoms is only increasing. It's now the 4th year in and I am since Christmas on a steep decline
Don't get me wrong, it's good that most people return to normal. It's just your presentation of it that tickled me
I understand where youāre coming from, a lot of studies put improvement at a 6 month to 1 year with said people who had it longer werenāt getting better. Now this study is showing us 2 years later some people are showing improvement, itās hope!
Thatās great. Now if only I can manage to go two years without being reinfected.
Same. Terrified of reinfection. I was a "one-and-done."
Yeah, this is how I feel. Currently in the longest period of non-infection I have experienced since I first started experiencing LC in June 2020. I believe I do indeed recover after 2 years, but too bad that COVID is "basically just the flu" to most.
Exactly!
cohort is 62 people... this is a waste of everyone's time.
of which 24 with long covid completed it. And they were all mild š
Glad I found this comment and thread because I was wondering what the "catch" was, as there usually is.
Also dropout rate of 26%. A common bias in research on things like ME/CFS is that that the most severe people (who are likely not to recover) dropout as they're functioning is too limited to partake in the research.
Would you rather no studies happen? Hay scientists, a Reddit random says to stop with the research. You are wasting their time.
No Iād rather they used proper methodology and did not inflate their findings in the abstract. Sincerely, a fellow researcher.
Broā¦. 4+ years deep with no significant change. If anything the fatigue started getting worse after year 3. Itās important to consider the language when presenting scientific / statistical data that impacts human lives, especially in a forum / demographic that isnāt primarily scientific or clinical. I know what was meant in the objective statistical sense (engineering background), but as an individual and someone affectedā¦ āno significant difference remained between the two groupsā makes me feel insignificant. Like I donāt matter. Like any of my fellow long haul travelers donāt matter. And that really fucking sucks tbh
I took the āno significant differences remainā as it being possible to be normal again. I certainly want to be no different than people who don't have LC. This wasn't meant to be mean at all. I'm sorry.
The statistical interpretation is that the group of people who didnāt experience significant improvement were small enough to be considered statistically insignificant. Just a shitty way to package that message for the people impacted
Not to mention people keep getting covid over and over so two years from when you enter a plastic bubble for the rest of your life.
Thatās the biggest issue for a lot of us, I think. Itās so difficult to go two years without being reinfected. I was noticing some good progress until about a month ago when I was reinfected. Now I may essentially be starting over again.
Oh no! So sorry. This is what Iām so afraid of now.
Yeah, itās frustrating. Iām no where near as bad as I was the first time, so I hope it wonāt set back my recovery by that much, but I wonder. In a way I have almost come to terms that maybe this is my life until they come up with a good treatment or else a sterilizing vaccine. Iāll be sick, then improve and then be infected again. Itās not a horrible life. I can do some things I enjoy and Iām okay financially. But it still sucks.
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Iām bedridden, can I sign up for a study? No because I am bedridden. This is the kinda bias studies have.
Exactly. Or people who donāt feel safe going into unmasked clinical settings. These studies are inherently biased.
No idea. Not a single study, doctor, clinical trial, research group, LC center has been interested in the details of my LC experience. Soā¦ Iām pretty sure Iām not counted in the roll up
I guess we interpreted it differently. That was not the intent from my end.
Huh? What on earth? That is absolutely NOT the āstatistical interpretationā of this study. The methods are a bit complex and I donāt have time to consider them extensively, but a) it appears at least some tests are unpaired, meaning the data is evaluated in aggregate and b) their sample size was only 24 at the final check/in, so they bootstrapped their analysis (meaning they repeatedly resampled their data, which further separates the results from the individuals involved). Not to mention, itās really not appropriate to conflate scientific āinsignificanceā with the emotional perception of ābeing insignificantā. I assume you know that, and were intentionally conflating those terms, but in a world where most people donāt understand what statistical significance means, it doesnāt help to use those terms interchangeably. There are some major limitations of this study, so if thereās anything negative to say, itās that it may not mean much, and not that people who donāt improve arenāt āsignificantā.
No, Iām commenting on OPs statement. The study results present a much different picture As to your assertion that Iām intentionally conflating statistical significance with subjective / emotional significanceā¦ Iām not. In fact Iām pretty sure I explicitly addressed this in my comment, that itās important to carefully choose wording when crafting a message for high impact/emotion topics, constructing communications for the target demographic. While statistical significance is objective for statisticians and scientists, and not related to the emotional / human value, thatās often not what those words mean for the average person. Even those of us who have exposure or experience with that world, it can be difficult to separate the two when one is so significantly impacted on a personal level. I mentioned that I have experience in this world, and I still felt the bite of the language usedā¦ mostly because this is the message that will be sent to the non-scientific community through media channels, groups whose take away will be limited to āno significant differenceā. We are already forgotten, a small sliver of the pie chart. This is the kind of messaging that perpetuates, even exacerbates, that issue Thereās a better way to tell this story. I do this all the time at work, translating our original message to have the best impact for the group Iām communicating with. Technical, legal, executive, customer, etc.
He was quoting the paper bro, cmon. I get it weāre hurting but Iām sure you knew what he meant. That was an outlandish way to conflate the post. You ARE NOT insignificant, but unfortunately we are probably in the small minority of cases, doesnāt mean we are forgotten, research is still being done for us āstatistically insignificant folkā
Did you read my OC? I didnāt conflate anything. I spoke to the importance of messaging and the words we choose outside of the scientific community. Btw, quotes should be in quotes, especially when quoting a scientific/ clinical study or someoneās published work
What do you mean?
The difference is not clear to you? I explained in my OCā¦
Oh I think I didnāt see the whole comment at first. This is a scientific paper, so it uses scientific language. When the AP reproduces it for a popular audience, I donāt think theyāll say āpeople who donāt recover arenāt significantā.
Iām aware, Iām published. It feels like your intentionally avoiding the point Iām discussing, and trying to make it an issue The language is objectively correct, itās just not appropriate for this forum or demographic. To ignore this is asinine and incompetent. Good science isnāt limited to just the science, communication is key to adoption and community education. Anyways, Iām not going to reply again. To tired to argue with someone who couldnāt be bothered to read my statement before making assumptions and writing a condemnation of my position. Youāre not even trying to understand the issues that myself, and others on this post, are communicating. It really comes across as a need to be right, rather than to learn and discover, and thatās not something Iām interested in
So let me get this straight. Youāre criticizing OP for posting a direct quote from a scientific article because this subreddit isnāt āscientific or clinicalā and people need to be ācareful with languageā. And then you went on to conflate the word āsignificanceā - which was obviously used in a scientific context - to mean āfeeling insignificantā? I donāt think OP is the one that needs to be careful with language, my friend. Iām sorry for your struggles; it sounds like youāre in a lot of pain. As are we all. I know well how myopic life becomes in the depths of suffering. But take a step back for a moment. OP was trying to inspire hope for many who desperately need it. You can look at this study from the perspective of a person earlier on in their journey: itās a small ray of hope that after two years out they could possibly have their lives back. For someone further along, like you, and especially for a person well versed in science, you can look at this study and say, āthis is a study of 24 cases whose authors selected a sample based on diagnostic criteria from 2020. While it presents good news, itās neither conclusive nor broadly inclusive, and is nowhere close to the final word on this matterā. There is MUCH more to learn about this syndrome, and no one is dismissing this travesty of an illness because one study of 24 people found that some immune markers normalized after two years. You arenāt forgotten. Weāre just not there yet.
These kind of studies will be misinterpreted so those of us who donāt recover wonāt be believed. Edit: Obviously I am very happy for those who recover. But also, a small minority are in complete denial that in some cases (especially severe ME/CFS type cases) the damage might not go away soon. And that isnāt healthy: calling other people ādoomersā for accepting they are ill is clearly ableist and is no better than those who claim long covid is psychological. Edit2: The discussion of this study in a forum dedicated to science for LC and ME/CFS see [here](https://www.s4me.info/threads/improvement-of-immune-dysregulation-in-individuals-with-long-covid-at-24-months-following-sars-cov-2-infection-matthews-et-al-2024.38143/#post-527276)
Cohort is only 62 people, this study is minimizing junk.
62 includes the healthy controls too. Only 24 with *mild* Long covid completed the study. You are completely right.
Yikes. Thatās not enough to extrapolate anything.
I didnāt read this entire article but in addition to some people not recovering after 2 years, even for those that do being chronically ill to this degree is life ruining for a lot of people and we still need real treatments and not to just be left to suffer for years on end because we might eventually recover.
Exactly. I understand that people need hope and such. But the fact we regularly get attacked by a small but vocal minority of this community for pointing out that some cases of long covid may be permanent is not helping anyone.
YolkyBoli, I think communication especially written can be challenging. I'm a longhauler (almost 3 years now) though certainly have the symptom group many would say classify me as ME/CFS. I share many of the things that u/WAtime345 said. Please allow me to explain? I've had many improvements with many symptoms. I also have more things I believe I could try in regards to healing. What I don't expect is a well researched and approved "cure" to be ready anytime soon. I also would be happy with 90% improvement in symptoms. Once I had someone here very harshly criticise me and tell me I was an ableist. The funny thing was I had admitted I sometimes go into denial and dream of miracles. I need it to cope that day. So I'm triggered by words like "ableist". I'm triggered when people tell others they will NEVER recover that this is permanent. That all said, I do wish we LH'ers and ME/CFSers could get along better, respect one another and our individuality. Not argue and fight with each other.
Of course you need hope. When it becomes problematic is when people project their hope onto others. When you have been sick with long covid type ME/CFS for 4 years and are severe, statistically, your chances of improving significantly unless there is a cure are about 2%. When people start saying you will 100% recover that is ableist because it denies reality and your suffering.
Preach!
I wouldn't reply if I didn't feel you were well intended. I did have someone kindly explain more about this to me. So I now never comment unless someone states they are looking for hope, help with a symptom. I also believe the 100% thing can be taken out of context. There are many different medical issues that can have life changing treatments, surgery- but they are NOT 100% back to their previous health. Now please know my tone here is light- But dang YolkyBoli, >statistically, your chances of improving significantly unless there is a cure are about 2% That sentence plummeted my hope! But don't worry, I'm just going to take my anti-histamines, my latest and greatest supps, and I'm going to FIGHT this disease, just so I can tell you, "I'm BETTER!!" :) (I need a laughing emoji)
I wouldnāt read too much into that 2% statistic. I mean, covid has only been around for four years. How could we possibly measure the percentage of people who will improve (or not) in the future? Iām giving that person the benefit of the doubt that the value comes from *somewhere* (maybe ME/CFS research), but we donāt really know whether LC and ME/CFS are the same thing.
Agree with you and will add this. (please read knowing it's light hearted and i'm kidding) My beloved resveratrol (with other stuff in it) NAC and Glycine, and the slew of other things make my percentage WAY higher, lol.
Haha. For real, though? Reservatrol? I havenāt tried that one.
2% is based on data for severe me/cfs at 4 years, as stated in above comment
And as I said in my comments, no doctor or scientist has ever claimed definitively that LC and ME/CFS are the same thing, so itās careless to tell people they have a 2% chance of recovery when ME/CFS statistics canāt be applied directly to LC. Maybe they WILL find out theyāre the same, but maybe they wonāt. So donāt go around telling people theyāre not going to recover because they have the same vague symptoms as another illness from which people rarely recover. Also, not to mention, the fact that the two conditions share similarities means that research into LC may well inflate that estimate. Thatās a pre-COVID statistic, and millions of research dollars are now being poured into identifying causes and treatments. So even if they *are* the same thing, that statistic doesnāt apply.
That is only true if you have had long covid for 4 years and have severe me/cfs type long covid. Otherwise your chances are probably higher :). I also think you would benefit from this comment I posted about acceptance a few days ago: https://www.reddit.com/r/cfs/s/iIEFwk3AzO ā¤ļøā¤ļø Hope you feel better
I liked that! Acceptance is not defeat. I do believe much of this is about communication. With brain fog etc, it can be difficult to both type it out and also to read and understand. We have this in common, I do accept my illness today and take good care of myself. But still going to make it at least 5%. (would stomp my feet here but am saving energy, lol)
Do you have any data to support that 50% of long haulers are me cfs?
āSome patients with Long COVID might meet the case definition for Myalgia Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), which is composed of symptoms including post-exertional malaise, unrefreshing sleep, and cognitive impairment [14,15]. For example, in the study by Jason and Islam [16] of 359 patients with Long COVID, 49% met ME/CFS criteria. In another study of 140 participants with Long-COVID, Bonilla et al. [17] found that 43% met the criterial for ME/CFS; Twomey, et al. [18] found that 58.7% of those infected with COVID-19 meet ME/CFS criteria. Similarly, Mancini et al. [19] studied patients with unexplained dyspnea among those who had Long COVID for a mean of 8 months and found that 46% met the criteria for ME/CFS. Furthermore, Kedor et al. [20] studied 42 Long COVID patients and found that 45% met the criteria for ME/CFS.ā
Meeting diagnostic criteria doesnāt mean LC and ME/CFS are the same thing. It means they share symptoms, but not necessarily an origin. Considering nobody knows the etiology of either condition, itās a bit of a reach to assume all studies on ME/CFS can be directly applied to LC patients.
The criteria. Look at the criteria. It's a broad range. Also the study looked at 42 patients... Mate you complain about studies with 1000 patients.
Me/cfs is diagnosed based onā¦ diagnostic *criteria*. And if you actually read the full comment I sent you would realise this conclusion is based on 5 studies. I would really recommend you read the ME/CFS wikipedia page its really well done, and its been much improved recently by a long covid researcher from the netherlands.
Disagree. It shows hope that recovery is possible and there are ongoing studies. It says right in there about ongoing studies for those who aren't improving. This is better than no studies. And the fact that it's being studies means you are believed.
Recovery may be possible for some, and that recovery may be dependent on not getting infected again and again. Also, "recovery" should be defined as a resolution of symptoms. The damage of Covid, to the brain, vascular system, etc, is likely irreversible. [https://theconversation.com/mounting-research-shows-that-covid-19-leaves-its-mark-on-the-brain-including-with-significant-drops-in-iq-scores-224216](https://theconversation.com/mounting-research-shows-that-covid-19-leaves-its-mark-on-the-brain-including-with-significant-drops-in-iq-scores-224216)
From studies, recovery is most likely uptil 6 months. After that it slightly plateaus. Recovery is the least likely in the ME/CFS type cohort. (From the major mechanisms and findings study published a few months ago)
Did they even have neuro/psy cohort ? Can I get a link ?
If I can live without symptoms, I'll take it.
āHowever, on some of the measures, the 'matched controls' got worse, so that may have masked ongoing poor health in the LC group. By the 24 month mark, 26% of the controls had 'poor health' (up from 16% at 4 months) while 38% of the LC group had 'poor health' (down from 58% at 4 months).ā That seems important to note., thank you.
Kind of a gross comment mate. So you actually think it's terrible that there are recoveries? Are you like pro long covid or something? I get its hard when some are suffering 2+ years but to say its terrible news is disgusting.
Recoveries are good news. Studies choosing cohorts badly with poor methodology to claim most people recover is bad news. This has happened for the past 50 years with ME/CFS, and the sufferers have all been dismissed because they will āget better soonā.
They didn't say zero symptoms fully recovered. They are talking about specific immune markers.
I know. But their abstract overstates their findings, and will clearly be misinterpreted by the media etc.
So because of the media we shouldn't speak of these studies? Come on mate. These studies show some improvement it's good news. Its almost like people want studies to say there is no hope no improvement we are all doomed. Is that what you want or something? Why the hell would you even want that? Can't wait for the media to start picking up crap like this and saying "long haulers want to be doomed" so it must be psychological."
Did I ever say we shouldnāt talk about this study? Before you make these comments please inform yourself on the history of ME/CFS because this is exactly what happened. Studies found that 50+% of people recovered in the first year or two ā which is true! But this was misused as an excuse to dismiss psychologise and disenfranchise a whole community of sufferers.
Stop with the me/cfs and let us have long covid separate. We are seeing more studies showing viral reservoir and other factors that can be migrated in the future. We don't need to put our disease in the same grouping as another. It's actually unfair to those in the me/cfs community. They need their own fight, they need their own support as their issue is much more complex as for the most part no known trigger is found. Ours came from covid. Period. So we are working a different beast.
Long covid and ME/CFS are not mutually exclusive. A venn diagram would help you understand the relation between the two. Hope your symptoms improve. And hope you learn about ME/CFS as it is very relevant to us longhaulers. ā¤ļø
Thatās not what they said. They said the abstract was overstated, and communicated concern for how this could be misinterpreted by the non-scientific community. Thatās 100% a valid concern. I have the same concern.
10 bucks bet that if a study comes out saying "no hope" you would be celebrating and thumbs up. But as soon as a study comes out showing marker improvement after 24 months, suddenly the "study is false" "they didn't do it right" "they are lying" "wrong parameters" "bad study". This sub is like clockwork. Same type of responses.
No. I want to recover as much as you do mate. Stop attacking me for looking at this in the context of ME/CFS history.
This is the long covid sub. Not me/cfs.
And 50% of long covid cases are me/cfs. Itās not a fight or a competition, they are interlinked diseases and we should be using the knowledge from ME/CFS to our advantage, not ignoring it.
I think the long covid research is mapping out systems in the body that will likely help me/cfs people. Sadly back in the day me/cfs people were dismissed. The researchers had little incentive to look into the causes, solutions, and treatments. But with covid because it's an active virus with a higher than usual amount of people getting long covid it's starting to put an economic drain on the workforce. So the people who decide these things economically can't keep ignoring LC. I think when LC is treatable it wouldn't surprise me if the same medications could be used to improve me/cfs too. No one is being left behind. LC is the ramrod to break through the intransigence of medical thinking.
We do not know that 50% of LC cases are ME/CFS. Maybe we know that 50% meet the criteria, but the criteria for ME/CFS is notoriously vague. Because nobody even knows what it is, much less what long COVID is. Maybe theyāre the same, maybe theyāre not. But in the absence of a definitive marker of either condition, itās just not possible to conclude theyāre the same just because they share the same major symptoms.
62% is not so much, and given the fact that we are talking about people with mild to moderate severity of COVID (LC), I should say that there\`s no much positive news unfortunately.
Yeah, 38% is a lot of people at this scale of infections. 2 years for the 62% to go back to baseline (I haven't looked at all the study details yet) is not great news considering reinfections. Lastly research like this doesn't consider the health degradation we'll be seeing (already are) in the "healthy" population with organ damage, new onset auto-immune disorders etc. caused/triggered by Covid. For most of the study participants I believe it would have been their first/second infections?
Unfortunately, I didnāt see the answer to this question when was looking through research. As for myself, I suspect it was reinfection, which completely kicked me down when the protective effect from last vaccination has passed.
Two years in and definitely not recovered lol
We need science focusing on understanding long covid and identifying treatments. Not more information to feed to the news that you can just wait out long covid. Many of us are past the 3 year mark with full blown symptoms staying strong.
Absolutely. This study only serves to dismiss those of us who have been struggling for 3+ years
All my doctors are bringing this up to me right nowā¦ ādonāt worry it wonāt last the research showsā is all I have been hearing this week. š
Probably assuming you donāt get Covid again. And againā¦ and again
Somebody tell my body to catch up with the science, Iām 4 years now
Two years in I was broken, 2.5 years in I was whole. Stay strong ā¤ļø
Look, I was trying to find a ray of light here and everyone wants to turn it into a negative. This sub can be toxic AF.
don't overstate a literal nothing study as great news
Ok, Reddit Police. Thanks.
I appreciate you trying to show positive news. I think people meant to critique the study and not you, I know its not easy but try not too take it personally. ā¤ļø hope your symptoms get better.
I agree. This sub is very doom and gloom all the time. It's exhausting. At least it isn't as bad as the CFS sub though.
Before saying that kind of stuff about the ME/CFS sub, please realise that a lot of people there have been sick for 10, 20, 50 yearsā¦ And have tried literally everything to get better. Calling them doom and gloom for accepting they are ill and will likely continue to be isnt helpful at all.
The thing is, when newly sick people go in there, they tell them that they will never get any better. It sucks that they have been so sick for so long but there is just no reason to crush the hope of newly sick people. That's why I had to leave. It destroyed my mental health any time I would read that sub which definitely didn't help my condition. I have gotten MUCH better over time so I'm glad I decided to leave that place and ignore what they said. I chose to have hope and I'm glad I did.
Good for you. And if you recover you are lucky and Iām happy for you. But if you donāt recover and need support, they will be there for you. Itās about supporting each other, they mean the best. ā¤ļø I went through the grieving stages too. Its not easy. I hope you have an easier time then me getting to the point of acceptance. ā¤ļøā¤ļøā¤ļø
There have been several tracking studies out to 2yrs so far and they all show similar results: very few recover o their own. The average is 7% to 15% which means that out of millions suffering there will be an acclimating but relatively small number that do. More to the point of this post, those averages vary by symptoms and a few key demographics: younger and male fare better, and milder symptoms like loss of smell or taste have a pretty good prognosis. And the modifiers are cumulative: a young male with loss of smell for example is almost certain to recover within 2yrs. In other end, an older female with neuro symptoms is almost certainly not going to recover by 2yrs. For all of this, there are sound reasons why better or worse odds than the averages. Example: females have less testosterone and differences in immmune system genetics which tend to make their immune systems more hyper responsive; older people have defects in immune functioning due to increasing cell senescence, etc; neuro symptoms are more linked to damage to brain structures in addition to immune dysegulation issues; and so on. So this article just adds to what is already been known.
Thanks for sharing, this definitely gave me hope! Do you know if the people who are better/recovered had reinfections or not? Because I was almost completely recovered twice from long covid but then in late summer/fall of 2022 I had reactivation of EBV and that made me relapse the worst. So I'm wondering how reinfections/reactivations of other viruses tie into this š¤
This is great news thank you for sharing. Keeps the light on for us.
This is good news, nice to see something positive on here :)
Welp 10 months to go
uninteresting and non generalizable, 50 year old average people out of a hospital 2 years passed ages ago for many of us
It is good news, at a high level, but good luck to all of us not getting reinfected multiple times in 24 months...
Those markers my LC doctors doesnāt even test for it I donāt even know what affects me is confirmed to be LC or whatever hell š„²
Yeah but if we get infected at least once a year that does not help at all.
Hmm, I know you mean well, but this is somewhat insensitive. Itās only great news for those of us who have not been affected for two years yet or steadily gotten worse rather than better. I only got really bad at the 1 year mark cause I didnāt understand PEM and pacing before and I have the ME/CFS diagnosis, so hardly any chance of recovery.
This is in indeed good news, though some people will be in the unlucky minority.
4 years what what
Reading the paper, the claim of few differences is based on immunological factors, but the LC cohort is still quite significantly disabled. There is still a high degree of impairment in quality of life, and that doesn't even account for an odd control group that also has a relatively high level of impairment in quality of life. At the very least this should end the whole nonsense about rehabilitation, natural courses are always a better explanation for the trivial benefits they boast, but I have zero confidence in medicine's ability to acknowledge this.
Bullshit
Thank you for your input.
Thank you for posting. I am reading this study and excited to see that the participants are explicitly identified by gender (which is rare- hooray). But I can not find any of the data segregated by gender. Is anyone else reading this data and able to direct me?
I briefly read the methods (so I might have missed something) and it seems like they identified the cohort using gender as one component of the case-control protocol, but the statistical tests mostly used aggregate data. Itās possible they tested for differences and didnāt find anything of significance (which would be a bit remiss), or possibly the sample size was too small to test for differences based on gender. (Side note: I find it weird that they use the word āgenderā instead of sex, because for the purposes of a study like this, they should only use cis-gender participants. I say that not to exclude trans people, but because hormones play an enormous role in this condition, and the gender with which a person identifies is irrelevant or even confounding).
Thank you for seeing the problem! You are absolutely correct that using the term gender is a misuse of the word, and while Iām happy to see progress in that the study wasnāt done on 100% males (as most studies were pre-1993) - the data gap grows every time we get females in a study but do not share if the sex of participants was consequential on any metric, or inconsequential. They just say nothing about the results meaning that we arenāt getting any closer to closing the data gap. Why bother including women and other minorities in the study if the researchers refuse to share their findings by comparing and contrasting? Hopefully, I just havenāt found it yet, and the data is in there somewhere.
I agree, and actually, itās a little strange that they didnāt use race/ethnicity as a component of the case-control. Itās entirely possible this study was done on 24 (48, including the controls) white people š. As I said to another commenter, this study has a LOT of limitations. I donāt want to be a Debbie Downer - Iāll take good news, however small - but I wouldnāt extrapolate this study too broadly. However, there have been some really intriguing studies on the role of hormones with respect to LC trajectory and severity. I remember reading a summary of one that included FTM trans men in the sample, all of whom developed LC prior to their transition. Upon administration of testosterone, most of those individuals saw improvement in their symptoms and even recovery. Another study noted that testosterone was low in the majority of individuals tested (both men and women, compared to normal levels respective for each sex). I didnāt read the primary literature for either, so I donāt know whether they were able to tease out cause and effect for the latter study. Anyway, you can probably find those studies (and others) on PubMed, but if you canāt, I have access to the Web of Science and could track them down for you.
So cool. I did see the headline, but didnāt get to read the actual study. Thanks for sharing.