3 ms·

My estimate is ~6% or roughly 1/20 of people who get covid will develop long covid. And it’s my opinion that the vast majority of them have a genetic predisposi

My estimate is ~6% or roughly 1/20 of people who get covid will develop long covid. And it’s my opinion that the vast majority of them have a genetic predisposition to it. Many were already sick before covid but only became aware of it after getting worse from covid. Most people with my genetic condition of hEDS will never know they have it if not for some trigger that makes it much worse. BTW Fibromyalgia has a huge overlap with hEDS… hEDS often has an anxiety disorder component which can make it look like a mental disorder and it kind of is given the interplay of the brain and immune system. But it’s a physical problem than needs real intervention.

fny 4y ago
You’re getting to my point. There are a whole host of symptoms that can be triggered for numerous reasons and the interplays are tremendously complex. It demands intervention but if we keep discussing this as COVID-specific symptomology the underlying condition may remain unexplored and untreated. What’s especially frustrating to me is that the definitions for long COVID are so broad and the cohorts used for these studies are so varied that they don’t explain at all the experience of long COVID as discussed in the blog post above or the stories in the comments. Given the seeming irrelevance of the research, I can’t imagine these people will ever find relief unless they break out of a COVID centric mindset and seek other therapies.
- cjbgkagh 4y ago
  It seems complex but it boils down to the same things; the major discriminating symptom should be Post-exertional malaise (PEM) which is a sign of immune dysfunction. It’s common to ME/CFS and Long Covid. Everything else is just jumping on a bandwagon. The only real difference I’ve seen long covid has to ME/CFS is some additional tissue damage. The problem is that ME/CFS is very difficult to treat and doctors typically have no clue, so what hope do patients have.
maxerickson 4y ago
Wouldn't genetic screening make quick work of identifying the people that might have the condition?
- cjbgkagh 4y ago
  The genes haven’t been identified yet. There are lots of different mutations and we don’t yet know all the pathogenic ones. The people involved seem quite incompetent.

fny 4y ago

You’re getting to my point. There are a whole host of symptoms that can be triggered for numerous reasons and the interplays are tremendously complex. It demands intervention but if we keep discussing this as COVID-specific symptomology the underlying condition may remain unexplored and untreated. What’s especially frustrating to me is that the definitions for long COVID are so broad and the cohorts used for these studies are so varied that they don’t explain at all the experience of long COVID as discussed in the blog post above or the stories in the comments. Given the seeming irrelevance of the research, I can’t imagine these people will ever find relief unless they break out of a COVID centric mindset and seek other therapies.

cjbgkagh 4y ago
It seems complex but it boils down to the same things; the major discriminating symptom should be Post-exertional malaise (PEM) which is a sign of immune dysfunction. It’s common to ME/CFS and Long Covid. Everything else is just jumping on a bandwagon. The only real difference I’ve seen long covid has to ME/CFS is some additional tissue damage. The problem is that ME/CFS is very difficult to treat and doctors typically have no clue, so what hope do patients have.

maxerickson 4y ago

Wouldn't genetic screening make quick work of identifying the people that might have the condition?

cjbgkagh 4y ago
The genes haven’t been identified yet. There are lots of different mutations and we don’t yet know all the pathogenic ones. The people involved seem quite incompetent.