Long Covid Awareness Day

Yesterday was Long COVID Awareness Day. We already have such a day for an illness that has only been around for about three years.

This is my fourth attempt to write a post here for yesterday. I probably won’t be satisfied with this effort either, but will post it anyway.

An awful lot of people already have the disease. In the UK it’s estimated to be 1.5 to 2 million people out of about 68 million in population. At the low end, that’s about 1 person out of every 50. You probably know someone who has Long COVID even if you think you don’t. It is already a stigmatized illness, so those who are functional enough to hide it may be hiding it from you.

If you don’t know what LC does to people, the best place to catch glimpses was yesterday’s Twitter.

LC overlaps with ME (CFS in the States), but it isn’t the same. It’s often worse. Both diseases have a very wide range of severity. At one end of the scale, some patients can put everything they’ve got into appearing to still be okay, holding down a full time job… while everything else goes by the wayside to accomplish it. There’s no fuel left in the tank for personal activities. At the other end of the scale are patients who are bedbound, unable to tolerate much light or sound, often unable to sit up, in some instances needing to be tube fed. Both ME and LC are sometimes fatal.

We don’t yet have much data about quality of life for LC patients. We do for ME patients. On average, quality of life for ME patients is worse than for AIDS patients until the last two months of the AIDS patients’ lives.

Speaking of which, LC also overlaps with AIDS. It’s such a strong overlap, some patients’ doctors put them through through months of investigaton for AIDS before eventually diagnosing LC. HIV and SARS-CoV-2 cause similar damage to the immune system. It stands to reason there are comparable problems after the initial acute infection subsides.

There are treatments for AIDS now. There are no standard treatments for ME or LC.

Studies generally suggest vaccination against COVID reduces the chance of ending up with LC after an infection. However, the only way to eliminate the chance of LC is not getting COVID at all. Each bout with COVID is another roll of the LC dice.

As I occasionally tell people, you know you’re really sick when it’s so bad you are afraid you won’t die. Been there. Don’t ever want to be there again.

It’s where people with LC are. It’s why so many of them showed, throughout yesterday, what has happened to them.

The sensible thing to do is avoid rolling those dice any more often than we must, for ourselves and everyone around us.