LUPUS UK are working with researchers at Cambridge University, patient-researchers from this forum, psychologists and some of the top UK rheumatologists, to try and find ways of improving the medical experiences and wellbeing of people with lupus and other systemic autoimmune diseases. This exciting new project is called the LISTEN study - Listening: Involving SLE/lupus (and other related disease) patients To Empower and Negotiate recognition
This study team ethos is that the research is carried out WITH and BY patients rather than ON patients as you are the ones who know most about the disease effects and what improvements could be made.
The first stage included analysing the forum; a survey and in-depth interviews to find out patient views and experiences. The survey (which many of you completed - thank you!) results have just been published and can be found here - academic.oup.com/rheumap/ad.... The draft forum results will be shared on the forum soon so that anyone can contribute to making suggestions, and deciding what you all feel is important for doctors and policymakers to know, before it is published.
This stage of the study includes looking at ways to see if wellbeing can be improved by peer support in small email groups. Additionally some people completing the survey will have the opportunity to be involved in deciding research questions that matter to you and everyone joining the study will have the chance to win £100 by entering the prize draw.
If you have any questions, please post a reply here or contact MelanieSloan the lead researcher, on mas229@medschl.cam.ac.uk
We will post the link to join the study early next week!
Written by
Paul_Howard
Partner
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14 Replies
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Very cool Paul! You are imaginative, supportive, and very proactive in helping so many that have this frustrating disease. This project of yours just might be the ground breaker we all need. Thank you so much.👏🙏👍
Thanks for your kind words. I can't take credit for this project though. MelanieSloan sent her research proposal to LUPUS UK and the charity was happy to provide a grant and assist with use of the forum. This project has had incredible input from members of this community and we owe them so many thanks.
Thanks Brooksidecourt, all these studies are very much a team effort with the researchers, the rheumatologists, LUPUS UK and most importantly, ALL the members here and everyone with these diseases. Although this next study is just for UK members (for timezone and logistical reasons), our previous studies were all nationalities, and most of our future studies will be open to all as everyone is an equally valuable part of the lupus community.
That really is exciting, Paul! Even though I don’t live in the UK, we all benefit from this sort of research. I am pleased to note they included undifferentiated connective tissue disease and mixed connective tissue patients in the study. There is so much we have in common. Until recently these groups were sort of orphans. It is great they are being studied and listened to too!
Hi KayHimm . It was important that this study was representative of this online community. We have many members with diagnoses such as UCTD, MCTD etc and their experiences are incredibly important to include. These diagnoses can be very troublesome for some as they are poorly understood.
Yes, it was important to both LUPUS UK and the researchers that all the different, related types of these diseases were included. There is such little research on UCTD. We would like one of our future studies to focus just on UCTD and the specific issues faced by these patients.
Hi PAul, unfortunately, I cannot do the survey as I do not have Lupus.
What I do find interesting is the correlation between diet and autoimmune diseases. My two sisters both suffer from Lupus, RA, scleroderma, etc. , have always lived in the UK and had different diets from myself.
I left the UK when I was 25 and lived in a small town in South America for almost 20 years. Here, we would buy fresh groceries, produce, meat, etc. daily. Simple diet but wholesome. Lots of fruit, meat, fish and veg. I now live in the US.
I do have hypothyroidism but it is well under control; have been tested for lupus a few times due to ‘suspicions’ and family history but always come back negative thank goodness. Another interesting theory; I worked for a gold mining company in SA and got mercury poisoning due to emissions from the plant. I always wonder whether this was a blessing in disguise and knocked out any rogue autoimmune cells? Just a thought.
I definitely think that diet plays a role in ‘kicking off’ these diseases, maybe changes cells?
Would be interesting to find out what the prevalence of these diseases is in communities where this kind of diet is the norm?
Thank you for sharing. We know that environmental triggers are important for the development of lupus in those who are genetically predisposed. Environmental triggers for lupus which have been identified so far include; certain viruses (such as epstein-barr), exposure to UV light, hormonal changes, stress/trauma and smoking.
I'm not aware of any published evidence linking diet to the development of lupus at the moment - although there is a growing area of research looking at the role the gut microbiome has in immunity and inflammatory conditions. In time we hope it will lead to findings which will really improve our understanding of what causes lupus.
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