3 ms·

You can get dysautonomia from either the covid virus or the covid vaccine. The vast majority of people don't yet know what dysautonomia is let alone how to diag

You can get dysautonomia from either the covid virus or the covid vaccine. The vast majority of people don't yet know what dysautonomia is let alone how to diagnose it or treat it. And from my experience most doctors as well. It's easily observed and the fact that doctors and medical researchers can't get that right diminishes my trust for them being able to get less easily observed phenomena right as well. Everyone should learn about dysautonomia as we're entering an epidemic of it and we're all going to encounter it one way or another over the next few years.

pas 4y ago
how serious it is? how prevalent? how persistent? how big of a public health problem it is and/or going to be? can it be treated? how well? was this known before? what other sources cause it?
- Traubenfuchs 4y ago
  A quick pubmed search shows that interest in dysautonomia existed since 1954 with a clear exponential increase of interest in it since then. -> https://pubmed.ncbi.nlm.nih.gov/?term=Dysautonomia%5BTitle%2FAbstract%5D&sort=date https://pubmed.ncbi.nlm.nih.gov/?term=Dysautonomia%5BTitle%2... As for many mystery syndromes with broad symptoms it's easily connected to covid infection, long covid and the covid vaccines. A clear and satisfying picture seems to be missing, hence me naming it mystery syndrome.
  - cjbgkagh 4y ago
    Many of the mystery syndromes are different manifestations of the same condition for which dysautonomia is most often a core underlying part. By way of analogy; hEDS is clearly autosomal dominant genetic condition and has been known about since Hippocrates yet because it presents in slightly different ways it largely escapes diagnosis. hEDS is also not rare, it’s only considered rare because it’s rarely diagnosed. The fact that medical researchers and doctors can’t get something so simple right after so long means I don’t trust them with anything that is even slightly complex.
- cjbgkagh 4y ago
  Very serious, it’s a core component to long covid. It’s a lifetime affliction for the majority who get it (up to 10% of the general population of which less than 50% will go into remission without treatment). People who get it often lose their jobs, their health, and their relationships all while being gaslit by doctors. It is a thoroughly life destroying condition. Suicides are very common. It can be treated but not very effectively for most people. This has been known since the beginning of medicine but the modern (mis)understanding of it is 75 years old (ME/CFS). Before that it was known as neurasthenia and has had lots of names throughout history. Lots of viruses cause it; EBV is the main one. Society will manage ok, people die and others move on, but an already bad problem is going to be made substantially worse, and we’ll all be poorer for it.
  - ncmncm 4y ago
    Thank you, I had not encountered this term before. Could be a very significant revelation.
Traubenfuchs 4y ago
> dysautonomia Unfortunately this seems to be a "catch-all" desperation-diagnosis with a huge range of mental and physical symptoms. Diagnostic procedures for it seem to range between esoteric over so very specific, that it would be extremely hard to find a doctor who does them to plain dangerous (lumbar puncture). How do you propose private individuals that suspect they suffer from it and GPs deal with it?
- cjbgkagh 4y ago
  It used to be a catch all so that position is now considered antiquated. There are still vestiges of that old position hanging around. PEM tests, auto-antibody, and immunoassays are the modern tests. There are meds for dysautonomia that will help many people, for those not helped they’ll have to wait for new meds to become available.
vibrio 4y ago
Is the penetrance and severity of the dysautonomia the same with the vaccine and infection? Does it happen with all vaccines types and virus strains?
- cjbgkagh 4y ago
  It’s hard to say as it’s very hard to collect data on. Lots of viruses can cause it but covid is especially bad for it, worse than EBV which was the main trigger before covid. The mRNA covid vaccine is the only vaccine that I know of that can trigger it.
  - vibrio 4y ago
    You have a high level of certainty. what drives it if it's hard to collect data on? Why do you know the mRNA covid vaccine can trigger it? Both BioNTech and Moderna's trigger it equally? Do mRNA technologies against other antigens trigger it? Anything on the penetrance of the disease as a percentage of vaccinated people? Suggesting that EBV is a trigger requires a very robust analysis as it is nearly 100% prevalent virus in adults. The study that linked EBV and MS was an unprecedented tour de force I do not mean to interrogate, but I'm fascinated and looking for details or sources so I can better understand.
    - cjbgkagh 4y ago
      I have a ML/Data Science background. It's hard to collect data on because doctors are bad at diagnosing and are highly inconsistent. Additionally there is political pressure to skew the data as well as social pressure to suppress data. We know because many people have gotten sick from the mRNA covid vaccine, myself included. In these groups there are sensible people who will tell you privately and with no ulterior motives that they can trace down the onset of symptoms to shortly after the vaccine. It's strongly and reasonably suspected to do with the spike protein and the ACE-2 AAbs created by the immune system in response. This protein is the same in mRNA viruses as in the covid virus. We know EBV is a trigger again due to timing of onset of symptoms, most people are doomed to catch it but usually only catch it once. It's not like MS where there is a long delay before onset of symptoms that would muddy the waters. There is plenty of literature around this point.

pas 4y ago

how serious it is? how prevalent? how persistent? how big of a public health problem it is and/or going to be? can it be treated? how well? was this known before? what other sources cause it?

Traubenfuchs 4y ago
A quick pubmed search shows that interest in dysautonomia existed since 1954 with a clear exponential increase of interest in it since then. -> https://pubmed.ncbi.nlm.nih.gov/?term=Dysautonomia%5BTitle%2FAbstract%5D&sort=date https://pubmed.ncbi.nlm.nih.gov/?term=Dysautonomia%5BTitle%2... As for many mystery syndromes with broad symptoms it's easily connected to covid infection, long covid and the covid vaccines. A clear and satisfying picture seems to be missing, hence me naming it mystery syndrome.
- cjbgkagh 4y ago
  Many of the mystery syndromes are different manifestations of the same condition for which dysautonomia is most often a core underlying part. By way of analogy; hEDS is clearly autosomal dominant genetic condition and has been known about since Hippocrates yet because it presents in slightly different ways it largely escapes diagnosis. hEDS is also not rare, it’s only considered rare because it’s rarely diagnosed. The fact that medical researchers and doctors can’t get something so simple right after so long means I don’t trust them with anything that is even slightly complex.
cjbgkagh 4y ago
Very serious, it’s a core component to long covid. It’s a lifetime affliction for the majority who get it (up to 10% of the general population of which less than 50% will go into remission without treatment). People who get it often lose their jobs, their health, and their relationships all while being gaslit by doctors. It is a thoroughly life destroying condition. Suicides are very common. It can be treated but not very effectively for most people. This has been known since the beginning of medicine but the modern (mis)understanding of it is 75 years old (ME/CFS). Before that it was known as neurasthenia and has had lots of names throughout history. Lots of viruses cause it; EBV is the main one. Society will manage ok, people die and others move on, but an already bad problem is going to be made substantially worse, and we’ll all be poorer for it.
- ncmncm 4y ago
  Thank you, I had not encountered this term before. Could be a very significant revelation.

Traubenfuchs 4y ago

> dysautonomia Unfortunately this seems to be a "catch-all" desperation-diagnosis with a huge range of mental and physical symptoms. Diagnostic procedures for it seem to range between esoteric over so very specific, that it would be extremely hard to find a doctor who does them to plain dangerous (lumbar puncture). How do you propose private individuals that suspect they suffer from it and GPs deal with it?

cjbgkagh 4y ago
It used to be a catch all so that position is now considered antiquated. There are still vestiges of that old position hanging around. PEM tests, auto-antibody, and immunoassays are the modern tests. There are meds for dysautonomia that will help many people, for those not helped they’ll have to wait for new meds to become available.

vibrio 4y ago

Is the penetrance and severity of the dysautonomia the same with the vaccine and infection? Does it happen with all vaccines types and virus strains?

cjbgkagh 4y ago
It’s hard to say as it’s very hard to collect data on. Lots of viruses can cause it but covid is especially bad for it, worse than EBV which was the main trigger before covid. The mRNA covid vaccine is the only vaccine that I know of that can trigger it.
- vibrio 4y ago
  You have a high level of certainty. what drives it if it's hard to collect data on? Why do you know the mRNA covid vaccine can trigger it? Both BioNTech and Moderna's trigger it equally? Do mRNA technologies against other antigens trigger it? Anything on the penetrance of the disease as a percentage of vaccinated people? Suggesting that EBV is a trigger requires a very robust analysis as it is nearly 100% prevalent virus in adults. The study that linked EBV and MS was an unprecedented tour de force I do not mean to interrogate, but I'm fascinated and looking for details or sources so I can better understand.
  - cjbgkagh 4y ago
    I have a ML/Data Science background. It's hard to collect data on because doctors are bad at diagnosing and are highly inconsistent. Additionally there is political pressure to skew the data as well as social pressure to suppress data. We know because many people have gotten sick from the mRNA covid vaccine, myself included. In these groups there are sensible people who will tell you privately and with no ulterior motives that they can trace down the onset of symptoms to shortly after the vaccine. It's strongly and reasonably suspected to do with the spike protein and the ACE-2 AAbs created by the immune system in response. This protein is the same in mRNA viruses as in the covid virus. We know EBV is a trigger again due to timing of onset of symptoms, most people are doomed to catch it but usually only catch it once. It's not like MS where there is a long delay before onset of symptoms that would muddy the waters. There is plenty of literature around this point.