4 ms·

Did you learn anything that helped in your recovery? I'm 1.5 years in and nowhere near a full recovery yet.

by jeroen 3y ago

ck425 3y ago
Was about to ask the same. I'm one year in and had a glorious month following reinfection in August but seem to have rebounded the last week or two.
thenerdhead 3y ago
I sure did. I'm writing a book on it right now. I have a couple of posts that might help: https://jondouglas.dev/long-covid/ https://jondouglas.dev/long-covid/ (Maybe outdated at this point but tells the full journey) https://www.reddit.com/r/LongHaulersRecovery/comments/12iv4p0/done_pushing_the_boulder/ https://www.reddit.com/r/LongHaulersRecovery/comments/12iv4p... (Probably the most realistic summary) The most important thing in my opinion that I don't talk about in these posts is to stay informed on the latest research and become study/trial literate. i.e. https://www.science.org/content/article/how-seriously-read-scientific-paper https://www.science.org/content/article/how-seriously-read-s... Wishing you the best to recover.
- cempaka 3y ago
  I think it's really a shame that aspirin is not emphasized more as a COVID and COVID-recovery treatment, given that it's known to help reduce clotting which is an important mechanism of COVID etiology. Even Biden's physician had him take it during his case.
whimsicalism 3y ago
Would recommend CBT. e: I'm downvoted but this is one of the only treatments with best-in-class evidence for its effectiveness in treating long covid as well as CFS and IBS. The body is a complex organism.
- jinder 3y ago
  Where is the best-in-class evidence that CBT is effective at treating long covid and chronic fatigue syndrome?
  - whimsicalism 3y ago
    https://pubmed.ncbi.nlm.nih.gov/37155736/ https://pubmed.ncbi.nlm.nih.gov/37155736/ There's even more evidence for CFS - the PACE trial is a notable example. These are politicized by certain patient advocacy groups and associated publishing circles but the evidence is considered pretty strong in the broader medical sphere.
- AnthonBerg 3y ago
  This is a very, very tall claim: this is one of the only treatments with best-in-class evidence Firstly, one would expect to see indications of the evidence for cognitive behavioral therapy working for a complex long-term illness with multiple documented physiological issues. Random paper: https://www.sciencedirect.com/science/article/pii/S0896627322009102 https://www.sciencedirect.com/science/article/pii/S089662732... Second, which class of evidence are you referring to? Third, to back the comparison in the claim you also need to present the lack of evidence for other treatments. This makes your claim very, very tall.
  - whimsicalism 3y ago
    > Firstly, one would expect to see indications of the evidence for cognitive behavioral therapy There is plenty of evidence if you go looking. It also looks like there is significant overlap between CFS and long covid and the PACE trial demonstrated strong evidence for the effectiveness of CBT in ME/CFS. https://pubmed.ncbi.nlm.nih.gov/37155736/ https://pubmed.ncbi.nlm.nih.gov/37155736/ > multiple documented physiological issues. "proposed mechanism" != "multiple documented physiological issues" and even the presence of documented physiological issues (such as in IBS) does not preclude the benefit of CBT because the body is complicated and the mind-body duality is not real. > comparison in the claim you also need to present the lack of evidence for other treatments. AFAIK - there has not been any other treatment showing this sort of evidence. It is difficult to prove a negative.
fragmede 3y ago
I'm in the US, so this advice is only applicable there, but LabCorp will test your blood for you without a doctor's note. I had to route around my doctor because I caught covid in the initial wave and no one knew what was going on. Your doctor may be able to help you more these days. Anyway, so I got my blood tested for all sorts of stuff, fixed deficiencies that came up, then leaned heavily on specialists to get medication to fix my symptoms. Beta blockers/other for my heart palpitations/other issues from a cardiologist, various inhalers for my lung issues from a pulmonologist, a whole slew of medications and treatments from a psychiatrist. And so much help from my friends. At the worst of it, it was exhausting walking from my bedroom to the kitchen, and I live in a small apartment. It did take years, but eventually I got there. Learning to never push myself, because that would cause me to relapse and spend a week in bed. They have a name for it now, but that's the biggest thing that helped, really. Hope you get a full recovery soon!

Did you learn anything that helped in your recovery? I'm 1.5 years in and nowhere near a full recovery yet.

by jeroen 3y ago

Did you learn anything that helped in your recovery? I'm 1.5 years in and nowhere near a full recovery yet.

Was about to ask the same. I'm one year in and had a glorious month following reinfection in August but seem to have rebounded the last week or two.

thenerdhead 3y ago

I sure did. I'm writing a book on it right now. I have a couple of posts that might help: https://jondouglas.dev/long-covid/ https://jondouglas.dev/long-covid/ (Maybe outdated at this point but tells the full journey) https://www.reddit.com/r/LongHaulersRecovery/comments/12iv4p0/done_pushing_the_boulder/ https://www.reddit.com/r/LongHaulersRecovery/comments/12iv4p... (Probably the most realistic summary) The most important thing in my opinion that I don't talk about in these posts is to stay informed on the latest research and become study/trial literate. i.e. https://www.science.org/content/article/how-seriously-read-scientific-paper https://www.science.org/content/article/how-seriously-read-s... Wishing you the best to recover.

cempaka 3y ago
I think it's really a shame that aspirin is not emphasized more as a COVID and COVID-recovery treatment, given that it's known to help reduce clotting which is an important mechanism of COVID etiology. Even Biden's physician had him take it during his case.

whimsicalism 3y ago

Would recommend CBT. e: I'm downvoted but this is one of the only treatments with best-in-class evidence for its effectiveness in treating long covid as well as CFS and IBS. The body is a complex organism.

jinder 3y ago
Where is the best-in-class evidence that CBT is effective at treating long covid and chronic fatigue syndrome?
- whimsicalism 3y ago
  https://pubmed.ncbi.nlm.nih.gov/37155736/ https://pubmed.ncbi.nlm.nih.gov/37155736/ There's even more evidence for CFS - the PACE trial is a notable example. These are politicized by certain patient advocacy groups and associated publishing circles but the evidence is considered pretty strong in the broader medical sphere.
AnthonBerg 3y ago
This is a very, very tall claim: this is one of the only treatments with best-in-class evidence Firstly, one would expect to see indications of the evidence for cognitive behavioral therapy working for a complex long-term illness with multiple documented physiological issues. Random paper: https://www.sciencedirect.com/science/article/pii/S0896627322009102 https://www.sciencedirect.com/science/article/pii/S089662732... Second, which class of evidence are you referring to? Third, to back the comparison in the claim you also need to present the lack of evidence for other treatments. This makes your claim very, very tall.
- whimsicalism 3y ago
  > Firstly, one would expect to see indications of the evidence for cognitive behavioral therapy There is plenty of evidence if you go looking. It also looks like there is significant overlap between CFS and long covid and the PACE trial demonstrated strong evidence for the effectiveness of CBT in ME/CFS. https://pubmed.ncbi.nlm.nih.gov/37155736/ https://pubmed.ncbi.nlm.nih.gov/37155736/ > multiple documented physiological issues. "proposed mechanism" != "multiple documented physiological issues" and even the presence of documented physiological issues (such as in IBS) does not preclude the benefit of CBT because the body is complicated and the mind-body duality is not real. > comparison in the claim you also need to present the lack of evidence for other treatments. AFAIK - there has not been any other treatment showing this sort of evidence. It is difficult to prove a negative.

fragmede 3y ago

I'm in the US, so this advice is only applicable there, but LabCorp will test your blood for you without a doctor's note. I had to route around my doctor because I caught covid in the initial wave and no one knew what was going on. Your doctor may be able to help you more these days. Anyway, so I got my blood tested for all sorts of stuff, fixed deficiencies that came up, then leaned heavily on specialists to get medication to fix my symptoms. Beta blockers/other for my heart palpitations/other issues from a cardiologist, various inhalers for my lung issues from a pulmonologist, a whole slew of medications and treatments from a psychiatrist. And so much help from my friends. At the worst of it, it was exhausting walking from my bedroom to the kitchen, and I live in a small apartment. It did take years, but eventually I got there. Learning to never push myself, because that would cause me to relapse and spend a week in bed. They have a name for it now, but that's the biggest thing that helped, really. Hope you get a full recovery soon!