Discussion about this post

User's avatar
Bonnie D. Huval's avatar

I have one quibble with this post. You said, "For the vast majority of people, we don’t think symptoms will last forever. In other post-viral syndromes, the majority of people eventually recover and are able resume their lives."

There is a lot of overlap between ME and Long COVID. As someone who's 35+ years into ME and who knows many people who are 20+ years into it, I cannot understand why anyone thinks Long COVID symptoms won't last forever. Recovering from ME is unusual. Most of us claw our way up to a point where we can resume some activities, but the ME does not go away and our capacity is diminished from what it should be. I am the highest functioning ME patient I've ever come across. At my best, I got to about 80%. I'm not there any more. Some of us are housebound or bedbound for the rest of our lives. A few of us die of ME.

If you prefer to ignore ME as a parallel (and it is indeed not a perfect parallel), we can look at the brain injuries so clearly documented by the UK biobank brain scan study and see that recovery from that damage is unlikely. Partial reclamation of some function, yes, as cells that are damaged but not destroyed rebound. Recovery, no.

So it's nice to believe that most Long COVID patients will eventually recover enough to resume a more or less normal life, but what evidence we have strongly suggests reality will not be that nice.

Aside from that... Thank you so very much for all the work and thought you put into these posts. I do appreciate your willingness to share your knowledge & expertise, and don't want this comment to cause you to think I don't.

Expand full comment
Jim Gauthier's avatar

Just want to thank you for all you are doing...these are great, must-reads that I share within my organization

Expand full comment
10 more comments...

No posts