Lupus & Diet Online Survey - Please share your experiences

[Paul_Howard]

Hi everyone,

A group of researchers at University College London (UCL) are interested in how diet can influence the immune system (the body’s natural defense mechanism). They have found that certain foods are linked with harmful inflammation in the body and disease flares. They would like to find out whether altering the diet could have a beneficial effect on lupus by decreasing inflammation.

A greater knowledge of how diet has affected experiences of people with lupus would help them to understand the potential of a new and exciting idea that they believe could help to reduce disease severity. They hope their idea could reduce dependency on drugs.

Before they begin the research, they would like to find out from you whether you have any experiences with diet and lupus that could help improve their study.

All of the team at UCL Centre for Rheumatology Research and LUPUS UK would like to extend their thanks in advance for your time and support in completing the online survey which is open until 14th March 2020.

surveymonkey.co.uk/r/LupusDiet

[Cas70]

Done !

[Spotty-ewe]

It’s done Paul, and thanks for telling us about it. 👍🏻👍🏻

[thestorm]

thank you paul, I hope it helps in union with all who have Lupus! blessings, the storm

[Barbara17]

Survey completed

[Hidden]

Survey done.

[Shadeshine]

Survey done. Was unable to list other autoimmune disease in question #3 (I think it was). Interested in future research/surveys, esp related to diet in autoimmune disease.

[DJK99]

Thanks Paul. So very pleased to see this. Diet has SUCH an impact on this and so many other conditions. I am living proof! Will be diving in to this one to give my input. Thanks again

[Hidden]

Really upset! I have UCTD diagnosis and could not complete survey. I have intolerance to cows milk, eggs and peanuts. I have eliminated these from my diet for last year and no longer take pain killers although still take hydroxychlotoquine. I would have like to have taken part and shared my experience with the researchers. Please could this be passed onto them I would bd delighted to share my personal experience??

[Paul_Howard Partner LUPUS UK in reply to Hidden]

Hi Hidden ,

Thank you for sharing your feedback. I'm sorry that you weren't able to take part in this survey. I don't know whether this was an oversight by the researchers or a deliberate intention to try and reduce some variables and study auto-antibody positive patients. I'll send them an email to share your thoughts.

[Paul_Howard Partner LUPUS UK in reply to Hidden]

Hi Hidden ,

I've just had a response back from the researchers. They said that this particular survey is focused on patients with SLE purely due to preliminary data they've collected which shows defects in fat metabolism and increased cardiovascular risk.

They are now applying these same metabolomics techniques to other autoimmune diseases to look at fat metabolism differences, so they're sure in the near future they will be wanting to validate the dietary responses in other autoimmune diseases.

[Hidden]

Awesome study! I’m glad they are doing this. I am using diet and supplements but am still so new at it. I thinks it’s all helping but being so in the beginning stages of this, I don’t think I have any expert advice. But I know others on here are well educated, tried and tested in this and I’m sure you will get lots of support. Again, I am very happy to see they are researching this. 🙏all my best!