29 β’ chronically ill, ND, disabled ππ³οΈββ§οΈ ππ€π§‘
Cohost's #1 Draculaura Stan
via Dorothea Salo (@dsalo@digipres.club) on Mastoverse, Johns Hopkins University is doing a Long Covid survey and having difficulty finding controls.
If you have not had Covid please take ~30 minutes to fill out their survey.
If you have had Covid, you can also participate, of course.
The survey is at https://covid-long.com/
took it too. already have a lot of the disabling long covid health issues from bad flu ten years ago. wondering how disabled people who have never had covid will impact the study
Yeah, as someone who hasn't tested positive for COVID but has ME/CFS from a viral infection ages many years ago, I fear my answers would be used to argue that long COVID doesn't exist because people who haven't had COVID have long COVID symptoms...
My family all works high contact jobs and was not able to avoid getting it twice, unfortunately.
I took the survey and I have a lot of symptoms/chronic illnesses that are like long covid before I ever had covid. (and surprisingly they did not get worse for me after covid as far as I currently know)
There was a section that asked if you had POTS (among other things) after covid, but it never asked me if I had it before getting covid (which I had it for at least a year before)
hope you are all doing as well as can be π
and yeeeah, i had to mention POTS in other, i got diagnosed in 2018, but funnily enough because of getting to stay home and live at a pace more suited to my disabilities, my physical health has improved tremendously throughout covid. they actually retested me for POTS last year when i told my rheuma she should stop taking that into account for anything because i think i'm doing just fine, and i did not meet the POTS diagnosis criteria anymore.
another one they asked about post covid that i had to put in other was fibro and me/cfs. i feel like it will be harder for them to sort through survey taker input options rather than if they just provided the option themselves. disability sucks for everyone and it is still new and terrifying for long covid patients, but for many of us who have been dealing with it for longer (when constant medical care isn't required ofc) my observations are life got better ! almost as if being able to work comfortably at home and not waste precious energy on commuting and other reasonable accommodations actually helps ...
also βββ altho i took the never had covid survey, i didn't have the option to say my health improved since. the most they offered was same health. so i feel like whoever designed the survey didn't think no covid control can still be unhealthy
I wonder if the difficulty is partially just the vague, general symptoms they include with Covid. I get why they're doing it, but I feel like few people have never had some of those symptoms from something in the past four years.
well the problem is covid causes these vague symptoms because it can cause tissue damage anywhere
huh, you know I am beginning to wonder if the general downturn in my level of executive function in the past 3 years has been caused by the brutal case of COVID I had back in 2021.
Completed. Now Johns Hopkins knows I suffer from anxiety and mild depression. <3
was fun to type in cohost.org into the "how did you hear about this?" section :)
