Johns Hopkins is doing a long-COVID survey and apparently is having trouble finding controls -- people who haven't had COVID. If this is you, consider giving them some clicks. @violetblue.bsky.social thought you may want to boost. covid-long.com - ThreadSky

brothercasas.bsky.social • 280 days ago

Johns Hopkins is doing a long-COVID survey and apparently is having trouble finding controls -- people who haven't had COVID. If this is you, consider giving them some clicks.

@violetblue.bsky.social thought you may want to boost.

https://covid-long.com/

Comments

saavikford.bsky.social•280 days ago

Did it, but did anyone else find it took forever to load new pages?!?

saavikford.bsky.social•280 days ago

Oh yes, I see now… everyone else is finding this… 🙄

sylviasolanas.com•280 days ago

thank you!

sahnet.bsky.social•280 days ago

Would be great if the site was responsive. Does not load after captcha. Neither my wife or myself have had Covid.

sahnet.bsky.social•279 days ago

Done. Took 18 minutes.

wijn.bsky.social•280 days ago

warning for those completing this: they estimate about 20 minutes to complete, it took me almost an hour (I'm not actually done yet). The servers are GLACIALLY slow, spending like 30 seconds+ per page submission.

wijn.bsky.social•280 days ago

also the captcha submission gets caught up by this too. After completing the RECAPTCHA form and hitting submit, _wait_. If you hit submit more than once, it boots you.

nofunoverlord.top•280 days ago

I'm..... still working on it

tomkimmerer.bsky.social•280 days ago

Done! Thank you.

brothercasas.bsky.social•280 days ago

Thank you for helping.

magpie.tips•280 days ago

Happy to help 🫡

pumpkinstars.bsky.social•279 days ago

i have me/cfs does that disqualify me? over half of long covid sufferers meet criteria for me/cfs

but i’ve never had covid. i got me/cfs and other afflictions pre pandemic.

strixbrevis.bsky.social•280 days ago

📌

medusaswink.bsky.social•280 days ago

Doesn’t that just say it all

davet711.bsky.social•280 days ago

Captcha problems & also won't load. Don't post crap if it doesn't work.

davet711.bsky.social•280 days ago

It's bull 💩. Don't bother. Captcha bs.

dkeldsen.bsky.social•280 days ago

As my esteemed colleague once said, “incompetence, it’s everywhere!”

dkeldsen.bsky.social•280 days ago

What relation does this have, if any, to Stefan Baral?

camirene.bsky.social•280 days ago

This is my husband. Just sent this to him!

cherimarie.bsky.social•280 days ago

This website is soooo slooooow. They say the survey takes 18-25 minutes but at least 17 of that must be waiting for pages to load. I'm being strong and sticking with it, but this is brutal.

crochetcat.bsky.social•274 days ago

Boosted. Neither husband nor I are eligible ☹️

yechiel.me•280 days ago

I don't know if it's just me, but the form is really really slow on my end. Like 2-3 minutes between pages slow.

retiredrph.bsky.social•275 days ago

Did this and forwarding to a friend--small Oregon town, where almost nobody has had it. A goldmine for the study!

bike4evr.bsky.social•280 days ago

Done!

carolinestark.bsky.social•280 days ago

they won't let me past the "I'm not a robot" challenge, I wish I were kidding

panellington.bsky.social•278 days ago

this was me. and i had been waiting for this day for quite some time!

done and done and j thrilled to be able to help :D

sid-eschenbach.bsky.social•280 days ago

Thanks. Done.

chaplainjohn.medsky.social•279 days ago

Completed, thank you for sharing this!

I hope they get a lot of good data to help us learn more about long covid.

boiler.bsky.social•279 days ago

That's me! I filled it out :)

barrenlens.bsky.social•280 days ago

Done

yoboseiyo.bsky.social•280 days ago

i reposted this to my mastodon because i figured it couldn't hurt. ❤

lonoxiii.bsky.social•276 days ago

Done, and volunteered for further surveys.

venneh.bsky.social•280 days ago

Boosting! But also lol can’t imagine why they’re having trouble finding people who’ve never had COVID

fabricatus.com•280 days ago

This is interesting as I don’t think I’ve had Covid, but I could have had it in March 2020 when I had a seriously bad cough and fever but there was no testing capabilities for the new disease. I’ve been negative since testing was available. (Also Australian so probably not suitable for that reason)

marsha.bsky.social•280 days ago

If this helps at all, it’s highly unlikely that you had a highly contagious disease in australia at that time and didn’t cause an outbreak so as an internet doctor I would say you didn’t have it

suzanherself.bsky.social•280 days ago

Done.

nerdymushroom.bsky.social•280 days ago

Hmm. As far as I know I never got it, but it was asymptomatic for some.

johnlinen.bsky.social•280 days ago

I don't think I ever had it either - just tested negative today when I felt unusually worn out - but yeah, the asymptomatic thing makes me not 100% sure.

steve-daniels.bsky.social•280 days ago

Jesus this survey site is slow.

micchiato.bsky.social•280 days ago

Filled most of it out, but the server crashed. It gave me the option to leave and save the answers I gave up to that point or start over. I left rather than start over.

kurisosityskat.bsky.social•280 days ago

Working through it. Very Slow to load all pages I think we are overloading it. I think I am about halfway

chopsiemurphy.bsky.social•280 days ago

I can’t make it past the recaptcha.

delightw2023.bsky.social•280 days ago

📌

violetblue.bsky.social•280 days ago

Yes, thank you!

brothercasas.bsky.social•280 days ago

Of course! Thanks for still doing the work.
#CovidIsntOver

mimibaltimore.bsky.social•279 days ago

Slow on page progression, but no problem filling it out on phone. Done & dusted! Thanks for the heads up!

zoroark.ca•280 days ago

This is gonna be another one of those viruses that end up becoming junk data in our DNA isn't it?

bepiper.bsky.social•159 days ago

The questions are too vague and are easily misleading, not mention it took forever to simply reach the survey itself.

susieusmaximus.bsky.social•280 days ago

Done

megnc.bsky.social•280 days ago

Done! ✅

hfepro.com•280 days ago

i feel like that says all we need to know, frankly.

amygalford.bsky.social•280 days ago

You need detailed vaccination records handy to answer some of the questions.

alice-chachacha.bsky.social•279 days ago

So many people had covid without knowing it. Remember the asymptomatic spreaders? How do they determine if folks didn’t have it?

wunder2welt.bsky.social•280 days ago

📌

lymang.bsky.social•276 days ago

I tried as well but couldn’t get through the labrythine “I’m not a robot” system - or their website is malfunctioning - not sure. No Covid for me !

michellespenc.bsky.social•279 days ago

We haven’t had it!
But we live like we did 4 yrs ago… mask , stay home
It’s not a fun or easy way to live. My husband is immunocompromised. We don’t want to catch or spread Covid.
Covid is Not a cold.. as you good ppl know who replied.
I’ll take the survey.

dataangler.bsky.social•280 days ago

@telllab.bsky.social

gothfashion.info•280 days ago

We haven't had it and I do test now and then just to be sure it's allergies (it is always allergies). We are still basically locked down like 2020. Happy to participate. Thanks for sharing this!

mrsgkravitz.bsky.social•279 days ago

Wish I could help… but I am in 🇨🇦.. hope you get enough to get accurate data..

ziggyearthdust.bsky.social•279 days ago

It doesn't matter where you live on the globe, all are welcome.

passeriform.bsky.social•280 days ago

Done.

penelopejmorrow.bsky.social•279 days ago

I want assurance before clicking one key that confidentially is kept. We Novids are the golden egg and potentially open to risk because we’ve taken precautions.

juliemoonthego.bsky.social•280 days ago

Finished.
But quietly giggling at the questions about sleep.
Doing a survey about not sleeping while not sleeping.

skyebirdsong.bsky.social•280 days ago

Lol same!!

pavlovsbitch.bsky.social•280 days ago

I give up

Apparently covid eliminated my ability to identify cars and motorcycles

gothfashion.info•280 days ago

You used to be able to do those? (I had to do a few tries as usual myself)

nih-llamas.bsky.social•279 days ago

Holy crahp that thing is slow. They should invest in a server that can handle a survey if they want people to take surveys.

therealsec.bsky.social•280 days ago

Took 3 Captchas to get in, then survey hung up on the second real question. No wonder they’re having trouble with responses.

moonshadow1900.bsky.social•280 days ago

I am not sure what help my answers were. Took more than 45 minutes.

anymouse.bsky.social•267 days ago

Done. As far as I know, I've never had CoV-2. I've had a bunch of vaccinations, though.

hedwigowlett.bsky.social•279 days ago

Done. I never had covid. My husband makes up for it: 3 times. Masks work.

jaze.bsky.social•280 days ago

I have never had covid.

northwind.bsky.social•279 days ago

I've absolutely been exposed to Covid but I've never had any definitive symptoms. (After my exposure I had a mildly runny nose and a light cough for 16 hours; I've had worse allergy seasons!) And we know it can be asymptomatic.

So, the question is, how does one know if one has had Covid?

northwind.bsky.social•279 days ago

I don't know for sure I've had Covid, but I don't know for sure I haven't. I don't want to bias their data.

I'm assuming it's best for me to just not respond?

candlelocks.bsky.social•279 days ago

i'm starting it and they ask "have you received a positive covid test or experienced covid symptoms" so i imagine that's the standard by which they're checking.

northwind.bsky.social•279 days ago

Given what we know about Covid, that's a pretty bad way of doing it. Not that I necessarily know of a better one, but we know it can be asymptomatic. Asymptomatic people aren't going to test, and type II errors are not unheard of even for those who do test.

northwind.bsky.social•279 days ago

And what about me? Does my mild runny nose after a possible exposure count as "covid symptoms"?

northwind.bsky.social•279 days ago

IDK. I feel like there's just a lot of doubt here. I really can't fathom that I *haven't* had it. I've taken precautions but my exposure has been unusually high on account of housing insecurity - so I feel like I *must* have had it at some point and been asymptomatic.

ennuigo.bsky.social•280 days ago

@barturtle.bsky.social this is you!!

loueyville.bsky.social•280 days ago

I tried 5x to enroll and it said "invalid captcha" every time. I've never had COVID nor has my husband or my mom. Happy to take the survey and pass it along, but....

panicrestaurant.bsky.social•279 days ago

Feel like I’ve got a moral imperative or something to do this 🫡

zackdavisson.com•280 days ago

I tried but the survey failed out.

rabble.nz•280 days ago

Are there people who haven’t had covid? Only those who had it asymptomatically & didn’t get tested when they had it. I got it once that I know of & the only reason I know I had covid was because I had to take a test before a border crossing. No symptoms and tested negative a few days later.

nop.codes•280 days ago

yeah man, some of us can’t afford to roll the dice no matter what the economy demands

rabble.nz•280 days ago

I agree that some folks are very careful. My teen insists on wearing a mask whenever they go out and have never tested positive for covid, my assumption is they’ve probably had it at some point.

thefourmonkeys.bsky.social•280 days ago

We’ve never had it. We’ve also been wearing masks everywhere since it began.

nop.codes•280 days ago

luckily some of us are adults and can control our circumstances a bit better :)

i wish all the luck to your teen, they’re at least trying. hope they’re able to continue to avoid 🙏

feliskathryn.bsky.social•280 days ago

i can’t get it to load after i do the proving im not a robot part lol. but i will try again later!

daveatcogs.bsky.social•280 days ago

Same here

daveatcogs.bsky.social•280 days ago

Just finished it; very worthwhile; best!

damemyniah.bsky.social•280 days ago

I found I had to turn off my VPN

feliskathryn.bsky.social•280 days ago

ohhh maybe that was it

brothercasas.bsky.social•280 days ago

Thank you & please do!
Hopefully the page loading issue means that they’re getting some good responses and not just some random tech issue.

tomkimmerer.bsky.social•280 days ago

Page loading was a bit slow, but it worked fine for me.

spaceturtleart.bsky.social•280 days ago

Yeah, this got reposted on Tumblr and apparently got so many responses they had to pause the survey for a few days.

feliskathryn.bsky.social•280 days ago

that’s kinda awesome

bluejacksky.bsky.social•273 days ago

It instructs you not to hit the "submit" on that page. ?

feliskathryn.bsky.social•273 days ago

idk i finished it a while ago

bodiva.bsky.social•280 days ago

Sadly their captcha is too hard to see. I’ve failed 3 times.

blueglow.bsky.social•279 days ago

It was a really rigorous captcha! I had some success with the audio option, dunno if that might work for you.

iquanyin.bsky.social•279 days ago

i tried to take their survey but the captcha just spins and spins.

handle.invalid•280 days ago

Lol one of the questions is about health before the pandemic. My health is greatly improved since. But I can’t answer that, there isn’t an option for that.

suetas.bsky.social•279 days ago

Same here due to diagnosis and treatment, in May 2020, of an autoimmune condition that had been making me ill for a while. And I'll still be one the controls who has a little tiredness and shortness of breath and whatever.

skyebirdsong.bsky.social•280 days ago

I tried to fill it out but the form hung once I answered the covid question on the first page. I'll try again later. I know for sure I haven't had it as I was tested as a part of a study here last year and I've been extremely careful since then because I was taking care of someone with cancer.

skyebirdsong.bsky.social•280 days ago

Managed to get it done this time.

mediumpalace.bsky.social•280 days ago

📌 will do later

carmendarlene.bsky.social•280 days ago

Wish I could, but I can’t seem to get past the captcha. 🤷‍♀️

dwhren.bsky.social•280 days ago

Just click on it and hit submit once and wait forever and it will eventually load even though it seems like it's not doing anything. The entire survey is incredibly slow. Every time it has to move to a new page it takes an eternity.

carmendarlene.bsky.social•280 days ago

I tried waiting, but got a “failed captcha” message. I might try tomorrow.

dwhren.bsky.social•279 days ago

I got several failed captcha messages, which I thought were because I kept clicking the submit button multiple times after it didn't seem to be doing anything. When I clicked submit once and waited it finally loaded without the error.

carmendarlene.bsky.social•279 days ago

LOL at my typo: TRIED earlier. (But yes, I am tired.)

carmendarlene.bsky.social•279 days ago

It's working for me now. I think it must have been a bit overwhelmed when I tired earlier. Much smoother experience now.

peakjinx.bsky.social•280 days ago

This is great! But I can’t get it to load so I’ll try again tomorrow.

holotox.bsky.social•279 days ago

Done, had no issues completing, took about 15 minutes. I participated in the first Pfizer Covid vaccine study and worked on the Moderna Covid vaccine study. Glad to help where/when I can!

johngoldin.com•279 days ago

I think I completed my survey response. Had some problem with the initial captcha. Perhaps I AM a robot. I’ve never had COVID.

catastrfy.bsky.social•280 days ago

done!

guste.wtf•280 days ago

I'm not one to (a) second guess scientists (b) minimize the reach of COVID generally but

I think I've spotted the problem.

glenatron.bsky.social•280 days ago

A "yes but I tested negative for COVID" answer there would have been the option that didn't leave us second-guessing the survey.

emsparkly.bsky.social•280 days ago

I parsed that as “did you get or think you got covid?” And to that I have to say, no. My recurring nausea has always been unrelated every time somehow.

torshi.bsky.social•280 days ago

Thiiiis. I've never tested positive but I've certainly had colds in the last four years. One or more of them may well have been covid.

cute-lil-chrysalis.bsky.social•279 days ago

Yeah I've never tested positive for covid and don't think I've ever gotten it but I got to this page and am scratching my head. Lots of things that aren't covid have these symptoms? I guess I just answer "No" and assume it's bad phrasing?

aaronradney.bsky.social•280 days ago

Considering I've never tested positive and that phrasing is probably a little poor I'm blazing ahead.

secretlentil.bsky.social•279 days ago

Yes - this is a terrible start. They ask for specifics once you're in the survey but you can't tell from this page. They really should have qualified this. I'm sure many people skip the survey because of this one page.

nicole.ashley.kiwi•279 days ago

It still assumes that a yes answer to these extremely broad symptoms is a "I'm pretty sure I've had COVID" answer.

guste.wtf•279 days ago

*I* sure did! Thanks for letting me know, I may go back to it

secretlentil.bsky.social•279 days ago

Oh good. I am taken aback that they designed it this way.

soonleenz.bsky.social•280 days ago

Fatigue and muscle aches are common side effects of getting vaccinated!!! It's a poorly worded question.

6sidedgames.bsky.social•279 days ago

Cough, shortness of breath, difficulty breathing, fatigue, headaches, sore throat, congestion/runny nose are all near daily things for me. Never had covid, just live with those things constantly.

guste.wtf•280 days ago

Like...yeah it's probably hard to find someone who's never had either a cough or diarrhea

rkopatryx.bsky.social•280 days ago

Yeah! I actually came here to poke around and see if anyone said this before I posted something similar (yeah, I'm that guy who googles before asking a question generally, LOL)
But yeah, I have a bunch of these symptoms intermittently and I don't leave the house! And here I thought I'd be a control!

danieltuttle.com•279 days ago

Yeah. I had a bad runny nose last year during peak allergy season. And I'm in AZ and not a native to AZ so these plants, whew. But I'm pretty sure I've never had COVID.

supergoofnz.bsky.social•280 days ago

Or allergies...

ranylt.bsky.social•280 days ago

Since pre-Covid? *raises hand*

Fully boosted, arrant masker, avoider of high-risk situations. Not sick a day since January 2019 (not 2020), when I was getting over my last chest infection.

lovesdaryl.bsky.social•280 days ago

I can’t remember the last time I was sick beyond “it was before I had Son” who turns 20 this year. I am also afraid that my immune system, for this very reason, will wreak absolute havoc with me if I should actually get infected with Covid.

guste.wtf•279 days ago

Well then you're lucky to have no ongoing issues that present in any of the ways listed, congratulations. Because I did the same through at least end 2022 and I had just about all of em at one point or another

ranylt.bsky.social•279 days ago

The dozens of us who still haven't had any symptoms since Covid are indeed lucky, and aren't you glad we exist so the study has some controls? Or is "misery loves company" more your thing?

guste.wtf•279 days ago

My main problem is preening

booktweeting.bsky.social•280 days ago

I have those things a lot and always tested for COVID, and never came up positive until last week

four year streak busted 😔

guste.wtf•280 days ago

That sucks! I'm sorry! I've never tested positive, and had one respiratory event this winter which may have been C19 but no doctor thinks so.

But definitely can't represent myself as part of the control group

booktweeting.bsky.social•280 days ago

I feel very fortunate to have gone so long without it, and to have had a light case!

mxs510.bsky.social•280 days ago

Yeah, this. I've never had a positive test result, but this is the point where I quit the survey. I don't believe I've gone a year in my life without any of those symptoms.