It will help Arthur's Place, JIA and The Wren Project get a better understanding of the needs and problems of patients with autoimmune rheumatic disease.
The Wren project might well be something members of our community might appreciate - either as a Wren seeking help or as a volunteer helping others come to terms with their chronic illness. It is a sort of Samaritans for autoimmune disease!
The link in the lupus post hasn't come up and I started to look at the site so I can't get the original link as you go back to the place you finished at - I can't participate as I'm outside the UK but if you search this:
bit.ly/ArthritisSurvey2022
the link will come up
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MSK tends to mean arthritis to most people - we need to increase our profile!! We managed it very well in one survey during Covid and we got a mention in the final paper that it led to.
Yes it is, but that’s because it’s funded by (mainly) arthritis charities - but at least you can mention PMR /GCA-which hopefully will be picked up somewhere along the line.
Oh, I understand that…I meant I wish a medical centre of excellence or a university would do ‘something’…technical medical paper, research paper etc etc…
Leeds is doing its best! Vanessa Quick is starting her PhD which is aimed at GCA, There will be other stuff that I don't know about. Still all needs funding and one source has gone - no collaborative stuff within the EU
I read a bit of the Wren project web site. I reckon they could really help some of the people who post here. Not those with the normal questions about tapering, hot sweats, can’t get to see a doctor, moaning about doctor/consultant, sick day rules etc…but those who feel they aren’t coping with life, those who are depressed & need ‘life help’. The offering from the Wren project sounds excellent to me.
That's why I said it was something members might appreciate - we have a lot to offer from our experience of living with PMR/GCA as autoimmune illnesses but also as users in the process of acceptance.
I am outside the UK as well but was able to participate from Canada. Very interesting and was able to cite our charity under' how did you hear about '? Could be useful in getting the word out. !
It was a fairly lengthy survey but I do remember that under location it covered different regions of the UK, then mentioned Europe followed by Other. So I put Canada in Other and it was accepted !
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