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This is something that's hard to talk about because it's both painful for patients to hear, and legitimately controversial due to shortage of data. There doesn
by Kliment 5y ago
This is something that's hard to talk about because it's both painful for patients to hear, and legitimately controversial due to shortage of data.
There doesn't seem to be a syndrome here. There's a handful of different symptoms, and they mostly don't occur together. There's certainly long-term symptoms, and mostly correlated with disease severity. You have long-term effects of hypoxia, and long term effects of lung damage, which you see in a significant number of patients who had severe disease. The hypoxia from untreated covid infection causes all sorts of multiple organ damage. This is entirely uncontroversial and well-understood.
In addition, there is some kind of likely autoimmune response, which is sometimes triggered by covid, sometimes goes away after vaccination, and has very variable severity and duration. This is really poorly understood, and seems to be similar to CFS. It is more frequent in more severe cases, but not exclusive to them (just rare for low-severity cases).
On top of that, there's an increased level of anxiety and depression in patients, but there's not enough data here to exclude a population effect. Anxiety and depression has jumped on a population level in covid-affected regions regardless of infection status.
Now, while having any long-term effect is common, having any particular long-term effect is rare, and multiple effects coinciding is both rare and strongly correlated with disease severity. My opinion is that treating these three categories of long-term effects as a syndrome is wrong, and trying to treat them as if they're the same thing is going to lead to worse patient outcomes.
There's a huge problem with this however - "long covid" is a patient-preferred term for a reason - it gets taken seriously. Those that have done the research on CFS know that patients with CFS get ignored and shrugged at for decades, and know if they lose the "long covid" wave of interest in the biomed/research/practitioner community they're screwed for the foreseeable future. Which is why patients insist on long-term post-covid effects being seen as a syndrome, and attack anyone who questions this (I have personally been attacked verbally about expressing this opinion). And I get it. CFS patients have been left alone in the dark for far too long, just like several other poorly understood diseases that systematically get ignored, mis-treated, or patients accused of making it up (see also: fibromyalgia, depression, a number of cognitive disorders in history). "long covid" is getting a fresh look at by the medical community, and this is a source of hope that it's mean to destroy. But reality doesn't care about whether it's mean, and I believe in reality we're dealing with a number of entirely separate syndromes that need to be treated very differently from each other, and bunching them together is distorting both the conversation and the treatments.
- nicoburns 5y agoI think a lot of the insistence on the “long covid “ terminology is just wanting acceptance that covid-19 can cause these post-viral symptoms, which a lot people still don’t accept, as demonstrated in this thread with people saying it’s just the stress of lockdown. The medical community seems to take the problem(s) seriously, but has very little idea how to treat it. Hopefully the high profile of the problem will lead to increased research in this area over the next few years.
- Kliment 5y agoThat's the thing. The stress of lockdown is causing its own population-level problems which are getting mixed in with this. That doesn't make the stress-related problems any less real, nor does it make the actual post-covid complications any less real. It just makes them two separate things.