Melanie Sloan from the University of Cambridge has been in touch, so far 20 people with Myositis have completed the survey and they need to get to 50 for Myositis to be included in the study.
It's an opportunity to have our condition more widely understood by the medical community 😁
Rheumatology patient survey from the University of Cambridge and patient groups. The survey asks about your medical relationships, disease symptoms and mental health.
In order to be a part of this study you will need to meet the following criteria:
Be aged 18 or over.
Be diagnosed with an autoimmune rheumatological disease. This includes diseases such as Rheumatoid Arthritis (RA) and other inflammatory arthritis, lupus, Sjögren's, undifferentiated (UCTD) or mixed (MCTD) connective tissue disease, systemic sclerosis, PMR, Inflammatory muscle diseases, and vasculitis.
Participants from all countries are welcome
It should take around 20-40 minutes to complete (you can pause or stop at any time).
Learn more about the study and complete the survey at bit.ly/inspire_patients
Written by
Jo-Goode
Administrator
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Happy to help with the survey. I have anti jo anti synthetase syndrome.
Really annoyed I could nit take part in this survey, the information regarding the link to complete the survey in here was hopeless and completely useless, anything to do with this site is hopeless and completely useless. Why dies it still exist,
I sorry you had difficulties with the link & your frustration, unfortunately this site does not does not always enable you to directly go to a link that has been posted without copying it (I have just tried it, did work for me, but the study is now closed).
A decision was made a several years ago by the charity to move to this website because the previous web based forum (which also had the same limitations) was so rarely used for many years (as people had moved to facebook) and we felt we could no longer justify the cost, especially when their were free web based sites available. I then personally set up a UK only Myositis forum on facebook and it now has 2,500 members and used by many people on a daily basis. It's a private group, so members have to answer questions to join & be approved by admin (myself), so unlike this group where anyone can read posts without joining the group on facebook is more "private". We have many UK member who have ASS. Here's a link to The Myositis Community of Great Britain & Ireland or search on Google & a link will come up for the group. facebook.com/groups/themyos...
There also is an ASS group on facebook , it's a worldwide group but one of the admins comes from the UK facebook.com/groups/Antisyn...
Thank you for your reply but I don’t want to be forced to join FB just because I have Myositis. I use the TMA website. Much more useful and nit connected to Facebook. Why should people coming to Myositis U.K. fir help abd support be pushed towards Facebook. You should be able to do better than this.
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DM and pain
Hello to every sufferer fighting his/her way back to a kind of normality
