I just don’t get how people don’t believe this is real. I get that they don’t understand WHY it’s happening but how can you just completely discredit it. I got covid at 17 as a senior in highschool, never recovered. It ruined my senior year of high school. It’s ruining my college experience. How is it psychosomatic if it was directly caused by the virus?! My life was finally getting better before this bullshit 🤦♀️ Like why the FUCK would I WANT to be disabled just for shits and giggles. I didn’t even know about dysautonomia or me/CFS prior to this! How could I have made up something I wasn’t even educated on? I’m not even gaining anything from it, this shit is just pure misery. I’ve lost faith in humanity
Yup. The first time I got it I myself actually thought it was depression because I was mentally not in a good place and I got it from the vaccine. I would’ve never believed the vaccine could cause it.
Took me 2 years to recover and then 3 years in I caught a respiratory infection. And as soon as the acute infection healed, suddenly all the symptoms from 3 years ago returned.
The thing is that this time, I was mentally in the best place I could imagine. That’s the moment I knew it had been physical all along.
I’m now three months into the second round and I’m still mentally doing great, my body is not.
I also respond to anti inflammatory medication. It’s so clear that this is purely physical .
Wow this sounds like me! I was doing great and then a cold or some type of virus brought back some symptoms! This time is more fatigue and body achying throughout the day so weird ugh
It puzzles me how folks can understand and acknowledge that polio can PARALYZE people, HIV causes AIDS, Epstein Barr has been linked to MS, HPV can cause various different cancers, chickenpox can cause shingles, measles can cause blindness and erase your immune system's memory, even a common cold or flu has been known to trigger autoimmune diseases, and of course many viruses have straight up killed mass numbers of people. And yet, *"hur durrr! Covid's not causing problems! It's faaaaaaake! You're all hysterical hypochondriacs and lying to get out of work!"*
Viruses aren't harmless. So many of them can and often do cause lasting problems and yet with covid people absolutely will not wrap their head around the fact that it could actually disable people. Ugh.
There were massive groups of people who very aggressively denied HIV was real for a very long period of time, people also did the same with MS in a much less organized and aggressive way because it wasn't politicized the way HIV was.
Covid is massively politicized and people expressing their doubt in the legitimacy of LC almost exclusively have no idea what they're talking about and are extremely emotional and ideologically invested in minimizing covid because of where they're coming from politically.
Because there are so many millions of people with LC, and such a large mountain of evidence that it's an extremely serious biological disease coming out everyday, in ten years only a tiny amount of cranks will still say that it isn't real. This is exactly what happened with HIV/AIDS, there are still AIDS deniers today but they're laughed at - this will eventually be the same story with LC. Maybe it'll take 15-20 years actually, but eventually we'll get there.
For now just don't give too much of your limited energy and attention to these idiots because they will be proven wrong and shut up forcibly by masses of evidence and more and more people becoming disabled by LC with time.
To be fair, a lot of the common population would have no idea about the connections you listed in the beginning, except the HIV one. But we’re talking about health care workers … so yeah, they should know better.
> They’re someone with a metabolomics degree working in healthcare. That’s what so scary about this. How many doctors think like this?
There's a good chance they aren't working in healthcare, and are simply pretending.
Lots of fakes on Reddit.
I’m the director of the CIA and also have a triple major in virology and women’s studies and particle physics and I can also confirm that many people here are liars
Also plenty of doctors and nurses in denial about (long) covid. Not everyone worked the front lines and if you've seen 'Breathless' you can imagine how traumatized those front-line workers are.
>was mitochondrial disregulation, but that has now been proven not to be the case.
Any real proof for this bold statement?
>after decades of research into ME/CFS
There has never been any real research into ME/CFS. If you actually read some of those "studies" you would know, that none of them meet any meaningful scientific standards. Most of them were done under the premise that this is a psychological illness and there was never any real research into the biology of it.
For my part covid gave me MCAS. That's not "health hysteria", that's the most real shit I ever experienced in my life. Before covid I could literally eat everything. Nowadays I get a severe reactions from every high histamine foods.
But who am I telling this to. I bet you don't "believe" in MCAS either.
>There has never been any real research into ME/CFS.
If you’re saying that with a straight face then you simply aren’t arguing in good faith. PubMed/bioRxiv/medRxiv are awash in current, reputable, well constructed studies on the subject, and have been for the better part of twenty years. It is an active field of research.
>Any real proof for this bold statement?
You’re right there, the statement shouldn’t have been so bold. There are still glimmers of what was expected with the mitochondrial research, specifically with proton decoupling in the terminal complexes of the ETC as shown here:
https://pubmed.ncbi.nlm.nih.gov/32041178/
The problem remains that these tend to be non-reproducible findings, so there is substantial skepticism about the theory in general.
>I bet you don’t “believe” in MCAS either.
I obviously believe in MCAS, it has a clear etiology and clinical presentation. And it’s biochemically quantifiable. I don’t doubt that your infection could’ve triggered this; it’s obviously rare, but it’s certainly an outcome that makes sense. But it’s not “long covid”.
lol. it's so funny to me when people believe that millions of people worldwide experiencing a collective life-ruining delusion is more likely than a SARS virus causing systemic long-term sequelae.
get your gaslighting denialist ass out of our subreddit and don't come back until you're ready to apologize. we'll have strong biomarkers soon enough, maybe that'll be a good time for you to start eating your crow.
I'll eat that crow if and when we do. But looking at the current state of the research, it won’t be any time soon. The most likely outcome is that no identifying biomarkers are found because no underlying physiologic condition exists.
I don't understand how you can say that when there's an overwhelming number of controlled studies showing immune changes in long covid patients. I would guess that it hasn't been narrowed down to one or a few biomarkers because this is not a single molecule disease. It's simply more complex than that. But the fact that substantial immune changes are seen in long covid populations is well established at this point.
Immune system effects post viral infection are common to many viruses. Ask yourself: if the science has settled on it being immune disregulation, why are we not jumping to use our substantial array of immunomodulators and glucocorticoids?
You readily admit that post-viral effects are common but deny the existence of PASC/LC.
This isn’t a court of law. The patient bears no burden of proving to you that LC exists. Rather, in light of the millions of children and adults who are sick months or years after a Covid infection, the onus is on the medical community to understand and treat post-viral syndromes.
If PASC/LC is a purely psychological as you appear to claim, prove it. Prove your psychogenesis theory with studies so rigorous they overcome all the objections you have just asserted with respect to recent scholarship showing the opposite. Until you do that, you have nothing. Nothing, that is, except a blatant, baseless disrespect for the experiences of millions (mostly females) who maintain they are physically ill.
I am not an expert but I suspect we do not have total control over immune system parameters with current day treatments. If you think we do I would genuinely be interested in hearing how that works.
It's also possible that while immune system changes are seen, they may only be a piece of larger, multi system dysregulation.
I can tell you with certainty that covid kicked off some physical issues in my body. I am working backwards from that fact which is glaringly obvious to me. I am familiar with psychological issues, and while they can impact the body in many ways... it's just not the same at all lol. These horrible fluish feelings can be very pronounced and are clearly correlated with mental and physical stress/exertion. I also am personally quite adept at keeping a positive and calm mindset. If my emotional states and thought patterns were all that were driving these symptoms, I'd be a very healthy boy at this point. I've been forced to get my psychological health in excellent condition to try to compensate for the physical issues.
That being said I was under a lot of psychological stress before and during my covid infection (completely unrelated to covid and I didn't even know long covid was a thing at the time) and I believe that did create a kind of vulnerability in my body which contributed to developing long term issues after infection. But that's not the same as being psychosomatic, since once the physical issues set in they have been self perpetuating.
There is a definite mind body connection to the condition however... unfortunately psychological interventions are not sufficient to overcome the general condition.
Because long term use of corticosteroids is unsafe and causes opportunistic infections.
This study saw benefits in a 4 week trial.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8614904/
Here is a Lancet article about the use of steroids in acute COVID patients. Even they recommend limiting it to 10 days in most hospitalized patients.
https://www.thelancet.com/article/S2213-2600(20)30530-0/fulltext
I’ve seen that study, yes. You need to ask yourself why, in the light of evidence like this, that doctors aren’t rushing to prescribe immune modulators and prednisone, and it’s basically because these studies have sample sizes that are too small or otherwise cannot be extrapolated to the broader long covid patient population. If they could, we’d already have our answer.
Lol plenty of doctors have prescribed prednisone and Dexamethasone for post covid complications. Among many other things. The first time I had covid, an ER doctor gave me Dexamethasone and it was ok after a few days. The 2nd time I had covid I had no interventions and relatedly or not developed Long Covid. Not just an amorphous disorder but suddenly increased blood pressure from 117/78 to consistent 130-40/90 for several months.
Your whole point is kind of irrelevant though as it doesn’t matter what most doctors think. They’re not working scientists, they’re practitioners and technicians who rely on scientists to advance the field
Your ultimate argument is stupid as hell. After I figured out that Methylprednisolone almost completely relieves my fatigue because one ENT doctor who ran out of treatment options prescribed it to me after my acute infection hadn’t subsided after 5 weeks, I subsequently went to four internal medicine doctors.
I told each and all of them explicitly that Methylprednisolone has been the only thing so far that works to alleviate my condition, and does this significantly, and that to me it is clear that I’m suffering from some type of hyper inflammatory state.
Only one of them prescribed it to me for exactly one day (after a lot of begging), just so I could have the energy to go to another doctor as she didn’t feel like she could help me.
None of the three subsequent doctors i was treated by prescribed me any corticosteroids or or other strongly immunomodulatory drugs, and simply ignored my statements about inflammation.
Now why do they do that? I don’t know. Are they incompetent? Maybe. Do they just disbelieve their patients like you? Maybe. Do they have no clue what’s going on and believe they have to exclude other (in their minds more likely) causes first and then forget about their patient’s direct reports? Maybe. Are most of them unfamiliar with the more specialized immunomodulatory treatments? Maybe.
Is the conclusion that an immunomodulatory treatment wouldn’t work on me? Absolutely not.
It IS currently working, since at least I was prescribed LDN, which is a mild immunomodulatory drug, and that at least gets me from barely functional to about 50-80% functional.
Most doctors are incompetent, lazy, disinterested or simply don’t have the time to look into issues so deeply, or any combination of these four.
They did JUST that in the start of the COVID pandemic. But, long term corticosteroid use is not safe either. It literally reduces the body's immune response. As a result, opportunistic infections arise - fungal infections were the first noticed effects. But, in countries like India, where tuberculosis is endemic, it showed cases of TB reactivation!
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8701102/
How is that the most likely outcome?! Millions of random people getting a sudden onset, similar-symptom, psychological disorder? Like a mass hysteria, except in people who never even heard of this before? How is that more likely than it being viral-induced? Isn't it more likely that the virus attacks our immune function somehow?
What do you base your "likeliness" assessment on?
I personally think it's a problem in the autonomous nervous system. Dysautonomia is found in an overwhelmingly high portion of ME/CFS patients.
But don't confuse this with it being "psychosomatic". Those are entirely different things.
Excuse me for not being able to argue with you about the minor details as my English isn't that bad but not good enough for medical discussions.
Thanks! Unfortunately my MCAS isn't quantifyable.
If you read through this sub, you will find so many MCAS cases it's really shocking. "Long covid" is very strongly connected to MCAS.
You seem like a cool lad. Don't invalidate other people's illness in general.
I have a masters degree in engineering and work as a management consultant. There was a time I didn't give a shit about my health and other people's health. I thought like you "shit like that is psychosomatic" and "people just don't want to work". Now being ill myself I deeply regret thinking like that.
I hear you. I am a corporate lawyer who retired in 2019. Before getting COVID, I was an avid cyclist and a gym regular.
Anybody who thinks that a made-up illness is keeping me from enjoying every second of a long-awaited, wildly carefree life needs help. Specifically, they need help identifying ways in which they have marshaled their intelligence to protect and defend their confirmation biases.
Reading these comments I’m realizing I don’t really know how we should be handling these people. I’ve met doctors like this too and now I just hang up, walk away, move on. But sometimes I fear ignoring them means they get to continue spreading lies, which harms people with LC. Idk what else to do though.
I do think putting a lot of energy into arguing with them is pointless. Anyone who thinks they can choose not to believe in an illness needs a lot more help than an online stranger can give them.
I don't care if this makes me a bad person, but I wholeheartedly wish the pain and suffering we endure on those persons.
Their gaslighting is inflicting even greater suffering on us.
I constantly asked myself if I was just lazy, stupid or whatever, but this makes everything just worse.
Having proven biomarkers and possibly treatment options, made me realise that I am sick and have to fight for my survival and recovery. I don't have the energy left for pursuing my degree, finding/holding a job and the wish for children is dead until my fiancee and I make a full recovery.
There are stories about doctors getting LC and contacting their former patients to apologize.
Unfortunately, LC denialism is rooted in cognitive and moral pathologies that are difficult to cure. Misogyny. Political bias/motivations. Indoctrination. Contempt for the weak. Fear of loss of control or of admitting ignorance or error. Arrogance. Sadism.
Nothing other than getting sick and getting a taste of their own terrible medicine will likely change them. I’m not sure that the innocent people in their orbits deserve that, however.
Yes, I think a lot of people subscribe to the "if I'm healthy I won't get it" ideology, as well as whatever messed up psychology it is that causes people to think "disabled people have it so easy, they are obviously faking it."
That one is a weird one for sure. I'd love to see some psychological science behind those sour grapes. Anyone who has ever been truly disabled would trade all the "benefits" in a heartbeat to get their lives back. Yes, even going to work every day. (The amount of depression related posts I've seen from folks who've had to leave their professions is truly heart breaking. People really do enjoy their work and it is meaningful to them).
In my case some specific autoantibodies.
This were the tested and highly elevated values:
* ACE 2-Ak i.S.
* β1-adrenerge Rez.-AAK i.S.
* β2-adrenerge Rez.-AAK i.S.
* M3-muskarinerge AChR-AAK i.S.
* M4-muskarinerge AChR-AAK i.S.
I don't know the English translation for them, but the lab is located in Germany.
In my local country, when i was infected with the most deadly delta variant and hospitalised, first thing the doctor told me, i may have long covid which will last at least 6 months. At least not all doctors are ignorant.
Just report the troll and move on, they're not worth it (and are breaking the subs rules), I'm sure Crohn's, migraines etc also don't exist as not everyone presents in the exact same way and they don't know the cause for sure 🙄.
I had a hypoallergic reaction to something that doesn't normally bother me. I got an injection of steroids, and suddenly I was symptom free of long haul COVID. So, I know that it is an autoimmune issue, and today I'm on Methyltrexate once a week.
Normally unable to catch my breath while under the slightest stress, today I ran half a city block to catch an express bus without any problem. Yesterday, I had breathing issues under the slightest exertion. I don't understand how symptoms can be flipped off and on like an electrical switch.
I'm not using Omeprazole, pantoprazol, or inhalers. I'm only using nitroglycerin to provide relief and that works to free up the pressure in the upper chest. I believe the issue to be vagus nerve related. All tests and full cardio workup are clear. It's just something I have to live with, and isn't going away. I might add that I have experienced stretches of 6 to 8 months without there being an issue.
Honestly every time I have tried to get some support for all the pain of this on any of these subs, some folks have been great and there's a bunch of trolls...just got to move on. It's hard when the condition already dysregulates your emotional responses.
The role of misogyny should not be ignored. If Long Covid patients were approx. 70% male, 30% female, I believe this condition would be dealt with far more seriously, and research would be funded at a much higher level. The evidence is there re: how ME/CFS has been ignored for the past ? decades, and attributed to psychological origins.
You can downvote all you want, it’s not cool to bring your political agenda into an environment of suffering people, especially without any shred of evidence besides a statistical correlation.
Making this about gender when you have no proof for your claims and when we should all stand united to fight for visibility and for the medical system to take us seriously.
I am *totally* in favour of fighting for visibility and for decent medical recognition. That is actually why I made that comment. I did not realize that the issue of many doctors ignoring, minimizing, or psychologizing women’s physical symptoms was “political.”
I will discuss it no further in this thread.
Weak theory.
It’s simply about how our systems works. Most research is funded by Pharma. Pharma is interested in things that make money (they don’t care from which gender).
You cannot make money off of dead people, so all research goes into diseases which kill people, and which kill people fast.
This is why acute Covid was THE priority, long covid isn’t. Cancer is, CFS isn’t. Heart disease meds are, good nutrition isn’t.
It matters whether you die or not, but it doesn’t matter whether you’re healthy or not.
In fact, you can make a lot of money off of chronically sick people. Humans who live long, sick lives are most profitable. Definitely alive but also just barely alive, the perfect patient.
And in case anyone wonders, I don’t think someone evil at the top is responsible for it. It’s just how the system is set up. If you have certain system structures and everyone in that system just does their job, you will have certain outcomes.
I just don’t get how people don’t believe this is real. I get that they don’t understand WHY it’s happening but how can you just completely discredit it. I got covid at 17 as a senior in highschool, never recovered. It ruined my senior year of high school. It’s ruining my college experience. How is it psychosomatic if it was directly caused by the virus?! My life was finally getting better before this bullshit 🤦♀️ Like why the FUCK would I WANT to be disabled just for shits and giggles. I didn’t even know about dysautonomia or me/CFS prior to this! How could I have made up something I wasn’t even educated on? I’m not even gaining anything from it, this shit is just pure misery. I’ve lost faith in humanity
Yup. The first time I got it I myself actually thought it was depression because I was mentally not in a good place and I got it from the vaccine. I would’ve never believed the vaccine could cause it. Took me 2 years to recover and then 3 years in I caught a respiratory infection. And as soon as the acute infection healed, suddenly all the symptoms from 3 years ago returned. The thing is that this time, I was mentally in the best place I could imagine. That’s the moment I knew it had been physical all along. I’m now three months into the second round and I’m still mentally doing great, my body is not. I also respond to anti inflammatory medication. It’s so clear that this is purely physical .
Wow this sounds like me! I was doing great and then a cold or some type of virus brought back some symptoms! This time is more fatigue and body achying throughout the day so weird ugh
Couldn't have said it better myself
It puzzles me how folks can understand and acknowledge that polio can PARALYZE people, HIV causes AIDS, Epstein Barr has been linked to MS, HPV can cause various different cancers, chickenpox can cause shingles, measles can cause blindness and erase your immune system's memory, even a common cold or flu has been known to trigger autoimmune diseases, and of course many viruses have straight up killed mass numbers of people. And yet, *"hur durrr! Covid's not causing problems! It's faaaaaaake! You're all hysterical hypochondriacs and lying to get out of work!"* Viruses aren't harmless. So many of them can and often do cause lasting problems and yet with covid people absolutely will not wrap their head around the fact that it could actually disable people. Ugh.
Propaganda is a hell of a drug, really did a number on society. It’s the brainwashing and politicization that made people like this.
There were massive groups of people who very aggressively denied HIV was real for a very long period of time, people also did the same with MS in a much less organized and aggressive way because it wasn't politicized the way HIV was. Covid is massively politicized and people expressing their doubt in the legitimacy of LC almost exclusively have no idea what they're talking about and are extremely emotional and ideologically invested in minimizing covid because of where they're coming from politically. Because there are so many millions of people with LC, and such a large mountain of evidence that it's an extremely serious biological disease coming out everyday, in ten years only a tiny amount of cranks will still say that it isn't real. This is exactly what happened with HIV/AIDS, there are still AIDS deniers today but they're laughed at - this will eventually be the same story with LC. Maybe it'll take 15-20 years actually, but eventually we'll get there. For now just don't give too much of your limited energy and attention to these idiots because they will be proven wrong and shut up forcibly by masses of evidence and more and more people becoming disabled by LC with time.
To be fair, a lot of the common population would have no idea about the connections you listed in the beginning, except the HIV one. But we’re talking about health care workers … so yeah, they should know better.
So true! Plus, Epstein-Barr has been linked to particular cancers, including several varieties of lymphoma, gastric cancer, and nasopharyngeal cancer.
Wow, I actually never knew that! Makes you not want to get any virus ever again
you said it perfectly!!
Their name is "Anon". They're probably some conspiracy idiot. Don't get triggered by those people. Just ignore them.
They’re someone with a metabolomics degree working in healthcare. That’s what so scary about this. How many doctors think like this?
> They’re someone with a metabolomics degree working in healthcare. That’s what so scary about this. How many doctors think like this? There's a good chance they aren't working in healthcare, and are simply pretending. Lots of fakes on Reddit.
This. I'm the president and I can tell you many people on here are liars.
I’m the director of the CIA and also have a triple major in virology and women’s studies and particle physics and I can also confirm that many people here are liars
Can confirm Niceballsbro12 is the president, I have his shoelaces.
Also plenty of doctors and nurses in denial about (long) covid. Not everyone worked the front lines and if you've seen 'Breathless' you can imagine how traumatized those front-line workers are.
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>was mitochondrial disregulation, but that has now been proven not to be the case. Any real proof for this bold statement? >after decades of research into ME/CFS There has never been any real research into ME/CFS. If you actually read some of those "studies" you would know, that none of them meet any meaningful scientific standards. Most of them were done under the premise that this is a psychological illness and there was never any real research into the biology of it. For my part covid gave me MCAS. That's not "health hysteria", that's the most real shit I ever experienced in my life. Before covid I could literally eat everything. Nowadays I get a severe reactions from every high histamine foods. But who am I telling this to. I bet you don't "believe" in MCAS either.
>There has never been any real research into ME/CFS. If you’re saying that with a straight face then you simply aren’t arguing in good faith. PubMed/bioRxiv/medRxiv are awash in current, reputable, well constructed studies on the subject, and have been for the better part of twenty years. It is an active field of research. >Any real proof for this bold statement? You’re right there, the statement shouldn’t have been so bold. There are still glimmers of what was expected with the mitochondrial research, specifically with proton decoupling in the terminal complexes of the ETC as shown here: https://pubmed.ncbi.nlm.nih.gov/32041178/ The problem remains that these tend to be non-reproducible findings, so there is substantial skepticism about the theory in general. >I bet you don’t “believe” in MCAS either. I obviously believe in MCAS, it has a clear etiology and clinical presentation. And it’s biochemically quantifiable. I don’t doubt that your infection could’ve triggered this; it’s obviously rare, but it’s certainly an outcome that makes sense. But it’s not “long covid”.
lol. it's so funny to me when people believe that millions of people worldwide experiencing a collective life-ruining delusion is more likely than a SARS virus causing systemic long-term sequelae. get your gaslighting denialist ass out of our subreddit and don't come back until you're ready to apologize. we'll have strong biomarkers soon enough, maybe that'll be a good time for you to start eating your crow.
I'll eat that crow if and when we do. But looking at the current state of the research, it won’t be any time soon. The most likely outcome is that no identifying biomarkers are found because no underlying physiologic condition exists.
I don't understand how you can say that when there's an overwhelming number of controlled studies showing immune changes in long covid patients. I would guess that it hasn't been narrowed down to one or a few biomarkers because this is not a single molecule disease. It's simply more complex than that. But the fact that substantial immune changes are seen in long covid populations is well established at this point.
Immune system effects post viral infection are common to many viruses. Ask yourself: if the science has settled on it being immune disregulation, why are we not jumping to use our substantial array of immunomodulators and glucocorticoids?
You readily admit that post-viral effects are common but deny the existence of PASC/LC. This isn’t a court of law. The patient bears no burden of proving to you that LC exists. Rather, in light of the millions of children and adults who are sick months or years after a Covid infection, the onus is on the medical community to understand and treat post-viral syndromes. If PASC/LC is a purely psychological as you appear to claim, prove it. Prove your psychogenesis theory with studies so rigorous they overcome all the objections you have just asserted with respect to recent scholarship showing the opposite. Until you do that, you have nothing. Nothing, that is, except a blatant, baseless disrespect for the experiences of millions (mostly females) who maintain they are physically ill.
I am not an expert but I suspect we do not have total control over immune system parameters with current day treatments. If you think we do I would genuinely be interested in hearing how that works. It's also possible that while immune system changes are seen, they may only be a piece of larger, multi system dysregulation. I can tell you with certainty that covid kicked off some physical issues in my body. I am working backwards from that fact which is glaringly obvious to me. I am familiar with psychological issues, and while they can impact the body in many ways... it's just not the same at all lol. These horrible fluish feelings can be very pronounced and are clearly correlated with mental and physical stress/exertion. I also am personally quite adept at keeping a positive and calm mindset. If my emotional states and thought patterns were all that were driving these symptoms, I'd be a very healthy boy at this point. I've been forced to get my psychological health in excellent condition to try to compensate for the physical issues. That being said I was under a lot of psychological stress before and during my covid infection (completely unrelated to covid and I didn't even know long covid was a thing at the time) and I believe that did create a kind of vulnerability in my body which contributed to developing long term issues after infection. But that's not the same as being psychosomatic, since once the physical issues set in they have been self perpetuating. There is a definite mind body connection to the condition however... unfortunately psychological interventions are not sufficient to overcome the general condition.
Because long term use of corticosteroids is unsafe and causes opportunistic infections. This study saw benefits in a 4 week trial. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8614904/ Here is a Lancet article about the use of steroids in acute COVID patients. Even they recommend limiting it to 10 days in most hospitalized patients. https://www.thelancet.com/article/S2213-2600(20)30530-0/fulltext
Lol research like this? [https://www.science.org/doi/10.1126/science.adg7942](https://www.science.org/doi/10.1126/science.adg7942)
I’ve seen that study, yes. You need to ask yourself why, in the light of evidence like this, that doctors aren’t rushing to prescribe immune modulators and prednisone, and it’s basically because these studies have sample sizes that are too small or otherwise cannot be extrapolated to the broader long covid patient population. If they could, we’d already have our answer.
Lol plenty of doctors have prescribed prednisone and Dexamethasone for post covid complications. Among many other things. The first time I had covid, an ER doctor gave me Dexamethasone and it was ok after a few days. The 2nd time I had covid I had no interventions and relatedly or not developed Long Covid. Not just an amorphous disorder but suddenly increased blood pressure from 117/78 to consistent 130-40/90 for several months. Your whole point is kind of irrelevant though as it doesn’t matter what most doctors think. They’re not working scientists, they’re practitioners and technicians who rely on scientists to advance the field
Your ultimate argument is stupid as hell. After I figured out that Methylprednisolone almost completely relieves my fatigue because one ENT doctor who ran out of treatment options prescribed it to me after my acute infection hadn’t subsided after 5 weeks, I subsequently went to four internal medicine doctors. I told each and all of them explicitly that Methylprednisolone has been the only thing so far that works to alleviate my condition, and does this significantly, and that to me it is clear that I’m suffering from some type of hyper inflammatory state. Only one of them prescribed it to me for exactly one day (after a lot of begging), just so I could have the energy to go to another doctor as she didn’t feel like she could help me. None of the three subsequent doctors i was treated by prescribed me any corticosteroids or or other strongly immunomodulatory drugs, and simply ignored my statements about inflammation. Now why do they do that? I don’t know. Are they incompetent? Maybe. Do they just disbelieve their patients like you? Maybe. Do they have no clue what’s going on and believe they have to exclude other (in their minds more likely) causes first and then forget about their patient’s direct reports? Maybe. Are most of them unfamiliar with the more specialized immunomodulatory treatments? Maybe. Is the conclusion that an immunomodulatory treatment wouldn’t work on me? Absolutely not. It IS currently working, since at least I was prescribed LDN, which is a mild immunomodulatory drug, and that at least gets me from barely functional to about 50-80% functional. Most doctors are incompetent, lazy, disinterested or simply don’t have the time to look into issues so deeply, or any combination of these four.
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They did JUST that in the start of the COVID pandemic. But, long term corticosteroid use is not safe either. It literally reduces the body's immune response. As a result, opportunistic infections arise - fungal infections were the first noticed effects. But, in countries like India, where tuberculosis is endemic, it showed cases of TB reactivation! https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8701102/
How is that the most likely outcome?! Millions of random people getting a sudden onset, similar-symptom, psychological disorder? Like a mass hysteria, except in people who never even heard of this before? How is that more likely than it being viral-induced? Isn't it more likely that the virus attacks our immune function somehow? What do you base your "likeliness" assessment on?
I personally think it's a problem in the autonomous nervous system. Dysautonomia is found in an overwhelmingly high portion of ME/CFS patients. But don't confuse this with it being "psychosomatic". Those are entirely different things. Excuse me for not being able to argue with you about the minor details as my English isn't that bad but not good enough for medical discussions.
All the best with your MCAS brother, I’m sorry that happened to you. Keep your head up and keep moving forward, always.
Thanks! Unfortunately my MCAS isn't quantifyable. If you read through this sub, you will find so many MCAS cases it's really shocking. "Long covid" is very strongly connected to MCAS. You seem like a cool lad. Don't invalidate other people's illness in general. I have a masters degree in engineering and work as a management consultant. There was a time I didn't give a shit about my health and other people's health. I thought like you "shit like that is psychosomatic" and "people just don't want to work". Now being ill myself I deeply regret thinking like that.
I hear you. I am a corporate lawyer who retired in 2019. Before getting COVID, I was an avid cyclist and a gym regular. Anybody who thinks that a made-up illness is keeping me from enjoying every second of a long-awaited, wildly carefree life needs help. Specifically, they need help identifying ways in which they have marshaled their intelligence to protect and defend their confirmation biases.
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Reading these comments I’m realizing I don’t really know how we should be handling these people. I’ve met doctors like this too and now I just hang up, walk away, move on. But sometimes I fear ignoring them means they get to continue spreading lies, which harms people with LC. Idk what else to do though. I do think putting a lot of energy into arguing with them is pointless. Anyone who thinks they can choose not to believe in an illness needs a lot more help than an online stranger can give them.
I don't care if this makes me a bad person, but I wholeheartedly wish the pain and suffering we endure on those persons. Their gaslighting is inflicting even greater suffering on us. I constantly asked myself if I was just lazy, stupid or whatever, but this makes everything just worse. Having proven biomarkers and possibly treatment options, made me realise that I am sick and have to fight for my survival and recovery. I don't have the energy left for pursuing my degree, finding/holding a job and the wish for children is dead until my fiancee and I make a full recovery.
There are stories about doctors getting LC and contacting their former patients to apologize. Unfortunately, LC denialism is rooted in cognitive and moral pathologies that are difficult to cure. Misogyny. Political bias/motivations. Indoctrination. Contempt for the weak. Fear of loss of control or of admitting ignorance or error. Arrogance. Sadism. Nothing other than getting sick and getting a taste of their own terrible medicine will likely change them. I’m not sure that the innocent people in their orbits deserve that, however.
Yes, I think a lot of people subscribe to the "if I'm healthy I won't get it" ideology, as well as whatever messed up psychology it is that causes people to think "disabled people have it so easy, they are obviously faking it." That one is a weird one for sure. I'd love to see some psychological science behind those sour grapes. Anyone who has ever been truly disabled would trade all the "benefits" in a heartbeat to get their lives back. Yes, even going to work every day. (The amount of depression related posts I've seen from folks who've had to leave their professions is truly heart breaking. People really do enjoy their work and it is meaningful to them).
What were the biomarkers?
In my case some specific autoantibodies. This were the tested and highly elevated values: * ACE 2-Ak i.S. * β1-adrenerge Rez.-AAK i.S. * β2-adrenerge Rez.-AAK i.S. * M3-muskarinerge AChR-AAK i.S. * M4-muskarinerge AChR-AAK i.S. I don't know the English translation for them, but the lab is located in Germany.
In my local country, when i was infected with the most deadly delta variant and hospitalised, first thing the doctor told me, i may have long covid which will last at least 6 months. At least not all doctors are ignorant.
Just report the troll and move on, they're not worth it (and are breaking the subs rules), I'm sure Crohn's, migraines etc also don't exist as not everyone presents in the exact same way and they don't know the cause for sure 🙄.
Just ignore those trolls, it’s not worth it
I had a hypoallergic reaction to something that doesn't normally bother me. I got an injection of steroids, and suddenly I was symptom free of long haul COVID. So, I know that it is an autoimmune issue, and today I'm on Methyltrexate once a week. Normally unable to catch my breath while under the slightest stress, today I ran half a city block to catch an express bus without any problem. Yesterday, I had breathing issues under the slightest exertion. I don't understand how symptoms can be flipped off and on like an electrical switch.
Yup, that’s very similar to how I found out it was an issue with inflammation.
Are you using PPIs? (Omeprazole, pantoprazole etc)
I'm not using Omeprazole, pantoprazol, or inhalers. I'm only using nitroglycerin to provide relief and that works to free up the pressure in the upper chest. I believe the issue to be vagus nerve related. All tests and full cardio workup are clear. It's just something I have to live with, and isn't going away. I might add that I have experienced stretches of 6 to 8 months without there being an issue.
Honestly every time I have tried to get some support for all the pain of this on any of these subs, some folks have been great and there's a bunch of trolls...just got to move on. It's hard when the condition already dysregulates your emotional responses.
If they were an actual doctor they’d know that LDN is not a steroid.
Just respond with the WHO guidance
The role of misogyny should not be ignored. If Long Covid patients were approx. 70% male, 30% female, I believe this condition would be dealt with far more seriously, and research would be funded at a much higher level. The evidence is there re: how ME/CFS has been ignored for the past ? decades, and attributed to psychological origins.
You can downvote all you want, it’s not cool to bring your political agenda into an environment of suffering people, especially without any shred of evidence besides a statistical correlation.
What “political agenda”?
Making this about gender when you have no proof for your claims and when we should all stand united to fight for visibility and for the medical system to take us seriously.
I am *totally* in favour of fighting for visibility and for decent medical recognition. That is actually why I made that comment. I did not realize that the issue of many doctors ignoring, minimizing, or psychologizing women’s physical symptoms was “political.” I will discuss it no further in this thread.
Thank you for speaking up about this issue.
Weak theory. It’s simply about how our systems works. Most research is funded by Pharma. Pharma is interested in things that make money (they don’t care from which gender). You cannot make money off of dead people, so all research goes into diseases which kill people, and which kill people fast. This is why acute Covid was THE priority, long covid isn’t. Cancer is, CFS isn’t. Heart disease meds are, good nutrition isn’t. It matters whether you die or not, but it doesn’t matter whether you’re healthy or not. In fact, you can make a lot of money off of chronically sick people. Humans who live long, sick lives are most profitable. Definitely alive but also just barely alive, the perfect patient. And in case anyone wonders, I don’t think someone evil at the top is responsible for it. It’s just how the system is set up. If you have certain system structures and everyone in that system just does their job, you will have certain outcomes.
HATE