4 ms·

Or maybe, people have been dealing with post-viral syndromes for a long time, our society is completely unequipped to understand and deal with them, and they se

Or maybe, people have been dealing with post-viral syndromes for a long time, our society is completely unequipped to understand and deal with them, and they see post-COVID syndrome as finally a chance to address this. But taking that perspective requires correcting for the systematic underweighting of the testimonial evidence of patients of chronic illnesses. Less trendiness, more empathy, please.

galangalalgol 6y ago
A lot of post viral stuff seems to be autoimmune, and we don't treat autoimmune well. Chronic fatigue and fibromyalgia weren't even recognized as real things not that long ago. Others like RA or Hashi's we suppress the immune system and/or rely entirely on simple tests to determine medication levels instead of relying on patient testamony and testing instead for over medication symptoms. These feedback loops are amazingly complex and looking at a few numbers doesn't cut it. In addition we know diet and environmental triggers are a thing from many studies, but doctors don't say "eat more greens" anymore, they say lets do a test now take this pill.
- noir_lord 6y ago
  I have chrohn's and the treatment for that is high dose steroids or chopping sections out. Fortunately I'm on the mild end of the spectrum and flairs are infrequent but it'd be nice if we had something better to treat auto-immune disorders. To control my chrohns I changed my diet by removing foods, keeping track of general well being for a few weeks then gradually introducing them to see what happened til I found a routine that worked, it's bland most of the time but I'll take the win - basically a Mediterranean diet which is fine. There is however a bunch of things in the pipeline including things like targetted biologics to selectively target the immune system that are exciting.
  - galangalalgol 6y ago
    Do you have any good wisdom on how you got diagnosed and what diets? I've always had GI issues and I have found some triggers like mushrooms, blackberries and cauliflower which poimt towards SIBO but my GI doc says there is no SIBO treatment or diet, and sometimes I have problems even on fodmaps. I did AIP diet with my wife who has Hashi's and I think that might have helped a little but not sure. Everything my GI prescribes just makes it worse. I can't eat sweet potatoes anymore after he put me on a round of fluconozole.
    - noir_lord 6y ago
      In my case my diagnosis was because they didn't know what was going on and the gastro doc ordered a camera both ends to rule things out - it showed up on the colonoscopy and the biopsies up til then I had no idea. I'd lost a lot of weight worryingly fast - mostly because of massive reflux problems (barrets oesophagus), was having frequent bouts of vomiting and diarrhoea and was generally in a shit state all around - as for diet it's really hard to recommend anything to anyone else since it varies so much - what worked for me was keeping a detailed journal of what I ate, how I felt, how I slept, toilet habits, times etc then I cut out basically everything from my diet I could for a few weeks (think porridge, cottage cheese and mashed potato/oven cooked chicken breasts) and very gradually added things back still keeping the journal until I had actual data I could look at - for me there isn't really any one food or group that acts as a trigger red meat/processed meat comes the closest, it's large high fat/high carb (think Pizza) that do it - if I eat fresh foods/veggies/fish/cheese (hard not soft) and limited amounts of fruit I have it mostly under control but what works for me might wreck you.
      - galangalalgol 6y ago
        Thanks! I don't loose weight easily, and everyone mentions that, so I don't think that is my problem. My gut does well on a western processed food diet, but that would kill me eventually. Greens and roots lean poultry and fish don't cause me discomfort, but diarrhea is common. I keep hoping I'll just adapt to it, but I think maybe I'm not built for that much fiber.

galangalalgol 6y ago

A lot of post viral stuff seems to be autoimmune, and we don't treat autoimmune well. Chronic fatigue and fibromyalgia weren't even recognized as real things not that long ago. Others like RA or Hashi's we suppress the immune system and/or rely entirely on simple tests to determine medication levels instead of relying on patient testamony and testing instead for over medication symptoms. These feedback loops are amazingly complex and looking at a few numbers doesn't cut it. In addition we know diet and environmental triggers are a thing from many studies, but doctors don't say "eat more greens" anymore, they say lets do a test now take this pill.

noir_lord 6y ago
I have chrohn's and the treatment for that is high dose steroids or chopping sections out. Fortunately I'm on the mild end of the spectrum and flairs are infrequent but it'd be nice if we had something better to treat auto-immune disorders. To control my chrohns I changed my diet by removing foods, keeping track of general well being for a few weeks then gradually introducing them to see what happened til I found a routine that worked, it's bland most of the time but I'll take the win - basically a Mediterranean diet which is fine. There is however a bunch of things in the pipeline including things like targetted biologics to selectively target the immune system that are exciting.
- galangalalgol 6y ago
  Do you have any good wisdom on how you got diagnosed and what diets? I've always had GI issues and I have found some triggers like mushrooms, blackberries and cauliflower which poimt towards SIBO but my GI doc says there is no SIBO treatment or diet, and sometimes I have problems even on fodmaps. I did AIP diet with my wife who has Hashi's and I think that might have helped a little but not sure. Everything my GI prescribes just makes it worse. I can't eat sweet potatoes anymore after he put me on a round of fluconozole.
  - noir_lord 6y ago
    In my case my diagnosis was because they didn't know what was going on and the gastro doc ordered a camera both ends to rule things out - it showed up on the colonoscopy and the biopsies up til then I had no idea. I'd lost a lot of weight worryingly fast - mostly because of massive reflux problems (barrets oesophagus), was having frequent bouts of vomiting and diarrhoea and was generally in a shit state all around - as for diet it's really hard to recommend anything to anyone else since it varies so much - what worked for me was keeping a detailed journal of what I ate, how I felt, how I slept, toilet habits, times etc then I cut out basically everything from my diet I could for a few weeks (think porridge, cottage cheese and mashed potato/oven cooked chicken breasts) and very gradually added things back still keeping the journal until I had actual data I could look at - for me there isn't really any one food or group that acts as a trigger red meat/processed meat comes the closest, it's large high fat/high carb (think Pizza) that do it - if I eat fresh foods/veggies/fish/cheese (hard not soft) and limited amounts of fruit I have it mostly under control but what works for me might wreck you.
    - galangalalgol 6y ago
      Thanks! I don't loose weight easily, and everyone mentions that, so I don't think that is my problem. My gut does well on a western processed food diet, but that would kill me eventually. Greens and roots lean poultry and fish don't cause me discomfort, but diarrhea is common. I keep hoping I'll just adapt to it, but I think maybe I'm not built for that much fiber.