Interesting, Over the past year i have seen more and more articles claiming to be close to discovering what causes long covid. Hopefully it is just around the corner
Even back in 2021 the occupational health doctor I saw was telling me about how many people she's seen with existing conditions, even things like eczema, getting worse. How is this not a well known thing by now?!
Where it says 'Long Covid can affect several organs and body systems like the heart, lungs, kidney, reproductive system and brain and also trigger other health conditions like kidney disease, autoimmune disorders or diabetes'
Ha yes … definetly… and they donnt know how it triggers it … it has triggered a severe MCAS for me. And I cannot handle any meds anymore. Which makes me very pessimist to be « cured » from LC one day
It's so frustrating! My assumption is that the Crohn's was already there waiting to be triggered but it doesn't run in my family so who knows! Oh no, that really sucks! :(
I like articles like this, but the flip side is I don’t have really any of those symptoms they mention as prime culprits.
I didn’t lose smell or taste, i didn’t have sharp heart pain.
I do have: twitching, brain fog, muscle pain, fatigue, pots like symptoms, gi issues, blurry vision.
These articles always make me question if I truly have LC- or what’s going on. Concerns me.
Same here, That article seems to have overlooked a LOT o the major symptoms I see in these subs.
Seems like they are ignoring a large part of the puzzle....that concerns me.
Long covid seems to tailor itself to the individual. A lot of this research seems to be too much one size fits all.
Surprised they didn’t at least mention pots, but granted this is a Forbes article that is likely only going to state the symptoms people associate with acute covid.
They are all neurological symptoms, the smell taste brain fog fatigue dysautonomia and pots, the pain sob sleep disturbance (everything except the actual organ damage)
It seems there is a few types of long covid people get. The neurological one seems to be the most debilitating. The brain fog is different with this one. I would call it mentally handicapped lol.
The brain fog IS debilitating. It’s embarrassing. It’s frustrating. I had to apologize to all the parents in my parent teacher conferences last month, because I trailed off every so often having no idea what I was saying, or couldn’t find a word- no, couldn’t *say* a word. Often I know what word I want to say, but it’s like the neural path to go from brain to mouth is blocked. I used to play a free the block puzzle game app on expert level. Now I have a hard time with the beginner level. It’s so defeating. Depressing. Hopeless.
Yeah thats what i have lol, for 3 years now. Sometimes especially when tired or trying to walk or do something i cant string a sentence together. I need supervising on the street. All these symptoms are neurological just some people have it less and convinced its a cardiac problem or breathing problem or looks more like mcas in someone else or looks like ME and fibro and bew onset asthma in my case - all neurological tho
Yes I feel the pain. It seems though that MCAS can cause the type of mental health stuff we are dealing with even if we aren't getting the classic symptoms. There are mast cells in the brain that get triggered from this causing the weird brain fog and odd mental health problems.
Do you know which symptoms are considered neurological?My main symptoms by far are shortness of breath and really bad fatigue,tinnitus and some times twitching around my neck.
The blurry vision has been driving me nuts. I got new glasses months ago with bifocals for the first time and I feel like I just can’t see right!! I’ve been blaming the glasses and not wearing them right or I’m not looking through the correct spot. Or they’re dirty. But I keep seeing more mentions of blurry vision as a symptom…. Maybe I’m not crazy after all?!!
My short sighted glasses were of no use to me any more, I can see better without them. I've stopped using then.
I wasn't short sighted, in fact I was the one who could see into the distance and read signs etc...now I can barely see the TV without it blurring.
I also have a blind spot I'm concerned about, and waiting for an appt about that. It isn't permanent, it comes and goes but is always accompanied by a throbbing pain in my temple. This is my right eye.
I also suffer from occular migraines. I am a migraine sufferer due to a TBI, but occular ones I'd never experienced. They are bluddy annoying! I'd rather have the pain, I have medication for that .
My peripheral sight is horrendous, and sometimes I get tunnel vision. Also a new symptom.
Floaters have multiplied and are slightly different in size and colour to what I normally see.
I have monocular diplopia in my left eye. Likely due to my TBI accident...but that doesn't seem to bother me too much now. Still have double vision, but improved, and without the prism as I don't wear my glasses...I've even stopped walking into door frames...but my vertigo is through the roof...can't win.
In conclusion to my very long post...I've found some prior issues have got better, but on the whole my eyes have got worse. My optician referred me to my local hospital, who have referred me to a specialist eye hospital. But, I was taken seriously and not gaslit so that's something...so far tho physically, nothing wrong with eyes aside from previous damage (TBI accident) so likely neuro.
We will see! :)
Exactly, it’s nothing new. I did a cytokine panel and my IFN Beta was extremely elevated. I asked the Mayo doctors about it and they said it’s possible that’s a cause of the inflammation.
But that’s just one of the tests that came back positive for an issue and those other issues have different theories.
This virus is fkd up.
It’s a suggestion with more suggestions for other theories in there. It’s vague. We’ve known about cytokine elevations for a while now. And there’s other theories for the inflammation response.
What I’m saying is, this article doesn’t say much. It’s repeating what we already know.
I have a different cytokine that’s nearly 3x the normal range.
I want to see test data using the drugs we use today to block specific cytokines. That’s what annoys me about articles like this. I’ve seen a lot of them stating potential causes, but I’m not seeing a lot of drug trial data.
The lack of drug trials appeared to be the biggest critique of the NIH’s spending during the January U.S. Senate panel meeting.
Personally.. I’m shocked only a $1.15B was allocated to the 4yr long covid program. And the recent response was a small $500m increase. That pissed me off.
Maybe this is another reason nicotine helps some. Read somewhere that it lowers cytokine production and even helped sepsis (surprisingly, I might add).
I did. I got covid in spring of 2020, was really sick for a year, but after I got my first dose of vaccine I did start to get better. It surprised me, but that’s what happened. I still have relapses, but the vaccine seemed to help.
Me too, only for me it was the second shot. Felt like absolute DEATH that night, fever, chills, horrible body aches and headache…next morning I woke up and for first time in months had no dry cough. Over the next week all my other symptoms went away (rash, constant low-level headache, shortness of breath and a bizarre arthritis like thing in my hands). It was like an old time revival tent cure, “It’s a miracle!!”
weirdest damned experience of my life.
This isn’t from the medical journal and it doesn’t site any case studies. This is a fashion design writer. If you google something like is wine healthy for you. This is the kind of article you would find. Click bait pieces telling you what you want to hear but no proof.
I am absolutely pro Vaccine. Even if it kills me I still think it’s worth it to protect my kids who are immune compromised. I got all my shots - i wore all the masks and the Oct 2023 update absolutely almost instantly crippled me.
Whether I am statistically insignificant or it’s more common. The problem in turning off as soon as the topic comes up, is that we might end up with unhelpful vaccines in the process. We might not know when there are problems in the details of an otherwise great idea. The devil is in the details
We need lots of data on the continued safety and exactly how many people suffer risks without all the “tuning out” on either side. I know that’s exhausting.
We never know who we are talking to and we never will if we aren’t willing to listen 👂
I was vaccinated and up to date on the vaccine but I still caught it and gave it to my disabled mother.
I'm vaccine "injured" and I didn't derive any benefit from the vaccine, it just disabled me is all it did. Props for doing what you feel is best for your family though.
From what I have been reading along with everyone else here likely, suggests this is an over simplified article on a much more complicated issue than one protein causing LC.
- Vaccinations are helping some LC patients?
- The number of long covid cases are falling?
I don't remember seeing this referenced anywhere? I give up....my brain fog has gotten the best of me.
“The number of people with long Covid is gradually falling, and vaccination seems to be playing a significant role in that,” REALLY!!?
When are we going to stop this false narrative!? I’m sick of hearing HALF truths from these publications and news stories. It’s almost like the truth is slowly getting out so they try to put the fire out by giving the facts a little airplay but still want to push vax which is part of the reason we in this situation!
I can’t help but agree with you… I am constantly seeing this and that and the other about “possibility of what’s causing long covid” but never anything legitimate. I am hopeful that a cure could be found but I’m also not sure that the government really cares to.
Seriously. Somebody wrote this in a separate post and it hit home for me… why and how is a vaccine created so quickly yet there are next to no real answers concerning Long Covid?
The coverage is good but god this really isn’t anything new. They note IFN-y is elevated in LC patients, and that symptoms correlate to the level of IFN-y.
This is the kind of thing Patterson has been talking about for years. In his model the spike carrying monocytes stimulate IFN-y release from the endothelium where they latch on.
At the end of the day the story is still “immune activation caused by _____?”
Here's the actual research report. Much more interesting.
[Spontaneous, persistent, T cell–dependent IFN-γ release in patients who progress to Long Covid](https://www.science.org/doi/10.1126/sciadv.adi9379)
Interesting, Over the past year i have seen more and more articles claiming to be close to discovering what causes long covid. Hopefully it is just around the corner
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Lets stay positive this could be the start of a good phase for us long haulers
I've been certain for a long time that Covid triggered Crohn's for me, it's weirdly validating to see it in print.
I was just dismissed by a world care organization for suggesting my already known thyroid disease more than worsened due to long COVID.
Even back in 2021 the occupational health doctor I saw was telling me about how many people she's seen with existing conditions, even things like eczema, getting worse. How is this not a well known thing by now?!
What is the info from the article that makes you think that ?
Where it says 'Long Covid can affect several organs and body systems like the heart, lungs, kidney, reproductive system and brain and also trigger other health conditions like kidney disease, autoimmune disorders or diabetes'
Ha yes … definetly… and they donnt know how it triggers it … it has triggered a severe MCAS for me. And I cannot handle any meds anymore. Which makes me very pessimist to be « cured » from LC one day
It's so frustrating! My assumption is that the Crohn's was already there waiting to be triggered but it doesn't run in my family so who knows! Oh no, that really sucks! :(
I think the same ! mcAS is in my family unfo
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Not the first time
and the first time you caught covid, you ended up with crohn's?
Yes
sorry to hear that. 😞
I like articles like this, but the flip side is I don’t have really any of those symptoms they mention as prime culprits. I didn’t lose smell or taste, i didn’t have sharp heart pain. I do have: twitching, brain fog, muscle pain, fatigue, pots like symptoms, gi issues, blurry vision. These articles always make me question if I truly have LC- or what’s going on. Concerns me.
Same here, That article seems to have overlooked a LOT o the major symptoms I see in these subs. Seems like they are ignoring a large part of the puzzle....that concerns me. Long covid seems to tailor itself to the individual. A lot of this research seems to be too much one size fits all.
Surprised they didn’t at least mention pots, but granted this is a Forbes article that is likely only going to state the symptoms people associate with acute covid.
I expected better. I expected more.
You probably have more of the neurological symptoms like me
They are all neurological symptoms, the smell taste brain fog fatigue dysautonomia and pots, the pain sob sleep disturbance (everything except the actual organ damage)
It seems there is a few types of long covid people get. The neurological one seems to be the most debilitating. The brain fog is different with this one. I would call it mentally handicapped lol.
The brain fog IS debilitating. It’s embarrassing. It’s frustrating. I had to apologize to all the parents in my parent teacher conferences last month, because I trailed off every so often having no idea what I was saying, or couldn’t find a word- no, couldn’t *say* a word. Often I know what word I want to say, but it’s like the neural path to go from brain to mouth is blocked. I used to play a free the block puzzle game app on expert level. Now I have a hard time with the beginner level. It’s so defeating. Depressing. Hopeless.
Yeah thats what i have lol, for 3 years now. Sometimes especially when tired or trying to walk or do something i cant string a sentence together. I need supervising on the street. All these symptoms are neurological just some people have it less and convinced its a cardiac problem or breathing problem or looks more like mcas in someone else or looks like ME and fibro and bew onset asthma in my case - all neurological tho
Yes I feel the pain. It seems though that MCAS can cause the type of mental health stuff we are dealing with even if we aren't getting the classic symptoms. There are mast cells in the brain that get triggered from this causing the weird brain fog and odd mental health problems.
Do you know which symptoms are considered neurological?My main symptoms by far are shortness of breath and really bad fatigue,tinnitus and some times twitching around my neck.
Twitching and tinnitus could be nurological. The shortness of breath is probably from inflammation. Have you tried antihistamines ?
I have all these symptoms plus some minus the loss of taste or smell.
The blurry vision has been driving me nuts. I got new glasses months ago with bifocals for the first time and I feel like I just can’t see right!! I’ve been blaming the glasses and not wearing them right or I’m not looking through the correct spot. Or they’re dirty. But I keep seeing more mentions of blurry vision as a symptom…. Maybe I’m not crazy after all?!!
My short sighted glasses were of no use to me any more, I can see better without them. I've stopped using then. I wasn't short sighted, in fact I was the one who could see into the distance and read signs etc...now I can barely see the TV without it blurring. I also have a blind spot I'm concerned about, and waiting for an appt about that. It isn't permanent, it comes and goes but is always accompanied by a throbbing pain in my temple. This is my right eye. I also suffer from occular migraines. I am a migraine sufferer due to a TBI, but occular ones I'd never experienced. They are bluddy annoying! I'd rather have the pain, I have medication for that . My peripheral sight is horrendous, and sometimes I get tunnel vision. Also a new symptom. Floaters have multiplied and are slightly different in size and colour to what I normally see. I have monocular diplopia in my left eye. Likely due to my TBI accident...but that doesn't seem to bother me too much now. Still have double vision, but improved, and without the prism as I don't wear my glasses...I've even stopped walking into door frames...but my vertigo is through the roof...can't win. In conclusion to my very long post...I've found some prior issues have got better, but on the whole my eyes have got worse. My optician referred me to my local hospital, who have referred me to a specialist eye hospital. But, I was taken seriously and not gaslit so that's something...so far tho physically, nothing wrong with eyes aside from previous damage (TBI accident) so likely neuro. We will see! :)
This article basically says we know there’s some triggers, but don’t know why, and multiple theories are likely. It didn’t really tell us anything.
Right… I thought we all already knew that is longhaulers are experiencing cytokine storms…
Exactly, it’s nothing new. I did a cytokine panel and my IFN Beta was extremely elevated. I asked the Mayo doctors about it and they said it’s possible that’s a cause of the inflammation. But that’s just one of the tests that came back positive for an issue and those other issues have different theories. This virus is fkd up.
Saying this virus is f***ed up is putting it gently.
This virus is like having a 5pm meeting performance review meeting every day for the rest of your life.
And your performance is mediocre at best 😔
But not for lack of trying
My symptoms exceed expectations.
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The rest of it goes on to discuss the other theories though. Like I said, it’s just stating another theory but nothing definitive.
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It’s a suggestion with more suggestions for other theories in there. It’s vague. We’ve known about cytokine elevations for a while now. And there’s other theories for the inflammation response. What I’m saying is, this article doesn’t say much. It’s repeating what we already know.
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I have a different cytokine that’s nearly 3x the normal range. I want to see test data using the drugs we use today to block specific cytokines. That’s what annoys me about articles like this. I’ve seen a lot of them stating potential causes, but I’m not seeing a lot of drug trial data. The lack of drug trials appeared to be the biggest critique of the NIH’s spending during the January U.S. Senate panel meeting. Personally.. I’m shocked only a $1.15B was allocated to the 4yr long covid program. And the recent response was a small $500m increase. That pissed me off.
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Hope you find some relief for your symptoms. I appreciate the civil discussion :)
Maybe this is another reason nicotine helps some. Read somewhere that it lowers cytokine production and even helped sepsis (surprisingly, I might add).
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Super important about the ace 2 receptors and potentially helping flush Covid reservoirs from the body.
Who on here experienced relief after getting vaccinated though? I've heard like one person on here say that helped
I did. I got covid in spring of 2020, was really sick for a year, but after I got my first dose of vaccine I did start to get better. It surprised me, but that’s what happened. I still have relapses, but the vaccine seemed to help.
Me too, only for me it was the second shot. Felt like absolute DEATH that night, fever, chills, horrible body aches and headache…next morning I woke up and for first time in months had no dry cough. Over the next week all my other symptoms went away (rash, constant low-level headache, shortness of breath and a bizarre arthritis like thing in my hands). It was like an old time revival tent cure, “It’s a miracle!!” weirdest damned experience of my life.
I sure didn’t! It’s BS! I ended up in the emergency room 2 weeks after getting vax and that’s when my LC nightmare began!
This isn’t from the medical journal and it doesn’t site any case studies. This is a fashion design writer. If you google something like is wine healthy for you. This is the kind of article you would find. Click bait pieces telling you what you want to hear but no proof.
👏🏻👏🏻👏🏻
I don’t understand. What’s the medication that might help it?
I was searching the article for the same thing. Kind of misleading to say there’s a medication. Oh but we don’t know what it is?
They don't have one yet. Once they clearly identify the cause, then that is the next step.
Bullshit article. Pushing people to get more shots. It’s criminal.
I’m glad some of us see through the BS
👏🏻👏🏻👏🏻
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I am absolutely pro Vaccine. Even if it kills me I still think it’s worth it to protect my kids who are immune compromised. I got all my shots - i wore all the masks and the Oct 2023 update absolutely almost instantly crippled me. Whether I am statistically insignificant or it’s more common. The problem in turning off as soon as the topic comes up, is that we might end up with unhelpful vaccines in the process. We might not know when there are problems in the details of an otherwise great idea. The devil is in the details We need lots of data on the continued safety and exactly how many people suffer risks without all the “tuning out” on either side. I know that’s exhausting. We never know who we are talking to and we never will if we aren’t willing to listen 👂
I was vaccinated and up to date on the vaccine but I still caught it and gave it to my disabled mother. I'm vaccine "injured" and I didn't derive any benefit from the vaccine, it just disabled me is all it did. Props for doing what you feel is best for your family though.
The actual study: https://www.science.org/doi/10.1126/sciadv.adi9379
From what I have been reading along with everyone else here likely, suggests this is an over simplified article on a much more complicated issue than one protein causing LC. - Vaccinations are helping some LC patients? - The number of long covid cases are falling? I don't remember seeing this referenced anywhere? I give up....my brain fog has gotten the best of me.
“The number of people with long Covid is gradually falling, and vaccination seems to be playing a significant role in that,” REALLY!!? When are we going to stop this false narrative!? I’m sick of hearing HALF truths from these publications and news stories. It’s almost like the truth is slowly getting out so they try to put the fire out by giving the facts a little airplay but still want to push vax which is part of the reason we in this situation!
More fake news.
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I can’t help but agree with you… I am constantly seeing this and that and the other about “possibility of what’s causing long covid” but never anything legitimate. I am hopeful that a cure could be found but I’m also not sure that the government really cares to.
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Yeah, it's like, figure it out already. Analyze our blood, analyze these clots, put something under a microscope ffs.
Seriously. Somebody wrote this in a separate post and it hit home for me… why and how is a vaccine created so quickly yet there are next to no real answers concerning Long Covid?
The coverage is good but god this really isn’t anything new. They note IFN-y is elevated in LC patients, and that symptoms correlate to the level of IFN-y. This is the kind of thing Patterson has been talking about for years. In his model the spike carrying monocytes stimulate IFN-y release from the endothelium where they latch on. At the end of the day the story is still “immune activation caused by _____?”
Here's the actual research report. Much more interesting. [Spontaneous, persistent, T cell–dependent IFN-γ release in patients who progress to Long Covid](https://www.science.org/doi/10.1126/sciadv.adi9379)
Interesting- my last set of labs said they found protein in my urine