Yet again - thanks to LupusUK for publicising Covid surveys relevant to us!
Please take part in this survey for a study looking into the effects of the COVID-19 vaccine in patients with autoimmune diseases.
The survey is also open to people who do not have any health issues so that it can be used for comparison.
You must be 18+ to take part, the survey should take approximately 5 minutes -
I have done it - and it took rather longer than 5 minutes!!!!
Done but definitely takes longer.
Took much longer! And like all surveys the questions did not quite match up with my experience. But done anyway.
Chanpreet at LupusUK said they got a briefing doc that claimed 5 mins, the blurb on the site said 7 mins. To read through maybe - I was well over 10mins but hadn't noticed when I started so don't know exactly. How long do you think you were? Some of my time was trying to work out what I'd not completed to their liking! Poorly designed in one place as you couldn't use auto-complete without all the fields getting the same entry.
Didn’t take too long -but not a lot applied to me -but agree not particularly user friendly on one or two options -dates of vaccines was a bit of a faff!
Have done a couple of different surveys - on a weekly/monthly/random basis over last couple of years so had most answered off pat!
Oh dates of vaccines was easy peasy!!! I know the 2nd was on Easter Monday last year - first was exactly 4 weeks before. 3rd was first Saturday in November and the date of the 4th is on my Green Pass.
I knew what dates were, just getting system to accept was the issue - perhaps because was doing on iPad rather than laptop….wouldn’t accept manual input - has to go back through each month/year…
I did the first 2 right - it would only accept 2021 in the date and for some reason I'd changed what i wrote to 21
Exactly the same here, & yes, I’m on my iPad!
No doubt I was being really thick about it, but I had to keep going back to see what I had done wrong or omitted. It probably took me about half an hour. I had all the exact dates, but took a while to see how they wanted them put in. No allowance for people diagnosed with an autoimmune disease after they started the vaccine programme. And no allowance for ongoing problems beyond 100 days. I could go on. I really wondered about the knowledge of disease of the compilers of the survey.
Don't think so - same happened to me. Poor design by someone who couldn't see from the patient view ....
Nothing new there then..! 😳 still at least they are asking ..
We must be grateful for small mercies I suppose!
Thank you for informing us of the survey.I also belong to virus watch. Anything to help further knowledge of this little studied area- Covid vaccinations and us.
I see there is an upcoming webair session, how can I register for that please
Contact Fran_Benson , one of the forum admin staff.
Caroline, please email webinar@pmrgca.org.uk - there's still time to register.
Just completed whilst having two morning cups of tea in bed! Definitely longer than 5 mins.
Just completed. Took about 15minutes
I couldn't answer some of the questions as they assumed you had an auto immune disease before vaccinations and asked if it got worse. I developed PMR 2 weeks after my 2nd jab but I couldn't say that anywhere. Similarly, what drugs you were on at the time of your 2nd jab. For me, none, so they think I'm not being treated!
Done but agree it's badly designed. I had the same 2021 changed to 21 error.
Done!
I couldn't complete the survey it kept taking me round in a loop when I clicked on next after adding 'no' to having any symptoms question! I tried several times but still could not complete..
Couldn't get beyond the page about major problems - I had none but couldn't see how to insert this. So left it. Perhaps they are not interested in people who had no after-effects. Unless someone here can help!
I also tried my best to complete the survey but wouldn’t move on saying more answers
I thought that topic was forbidden? Told you it is only a matter of time.
I have no idea what you are talking about - could you enlighten me?
My apologies, it may have not been you. I had a post deleted/censored for mentioning the jab. I thought you were the person running this site
Forgive me
No - just the unpaid help. Talking about the jab is not forbidden, it is the context that is relevant and this was research relating to autoimmune disorders.
Well that was my polite reply to be censored and my post deleted
“Long term effects of the Jab should be discussed in here, good or bad. “ I did not do the poll because I am not a participant in experimental gene treatment and my integrity means more than my life
For all I know it might help but it did not help the people I know at all. Too many first hand cases but most were not hurt at least
Completed
I found some of the questions a bit strange but did manage to complete it
I managed to do it. Didn't time it but prob about 10 mins. Would have much longer without vaccine dates to hand!
Tocilizumab patients and the COVID Vaccine
COVID vaccine side effects
Would it be unwise to volunteer for Covid vaccine study if you have PMR?
