LUPUS UK HealthUnlocked Community Research Paper ... - LUPUS UK

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LUPUS UK HealthUnlocked Community Research Paper - NOW PUBLISHED

Paul_Howard
Paul_HowardAdministrator

Hi everyone,

I'm really pleased to announce that an important research paper produced collaboratively with this online community has been published! A great way to end Lupus Awareness Month 2020.

The paper "‘But you don’t look sick’: a qualitative analysis of the LUPUS UK online forum" was produced by the fantastic MelanieSloan and regular contributors to this site.

The research wonderfully encapsulates the experiences of people with lupus and associated conditions and we hope it will raise awareness of the impact living with the disease can have. Importantly it also emphasises the role of community support groups - something which is demonstrated excellently on this site.

You can read the paper at rdcu.be/b9eOW

8 Replies
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Thanks Paul for your guidance through a very busy and informative October. Best wishes Kevin

Thank you very much indeed Paul! As I mentioned in my recent messages to you and to Melanie, I was very keen to get another copy of this brilliant report. Also, my very best wishes and congratulations to Melanie Sloane for her amazing work.

Wow, thank you for putting this together. Makes powerful reading. I assume it will be shared with Rheumy departs and GPs?

Fantastic comprehensive paper. Thanks for posting the link Paul.

Well done!

An excellent article which actually expresses how most of us SLE patients feel. Well done!!

Thank you Paul for your dedication and for keeping abreast of Lupus development. Much appreciated

Chantev

Thank you so much to EVERY forum member here - this research and the positive changes we hope will happen from sharing our experiences and views as a group is completely down to this fantastic community.

If you gave permission for one of your posts/responses/quotes to be used and we didn't use it in this paper, we will try and use in another paper as we have several more planned to keep raising awareness.

Our latest research is on the impact of COVID on care for lupus and other systemic autoimmune diseases, and we are also looking at the impact of being allocated to the shielding/not shielding groups.

Thank you all again, this is such a great friendly group :)

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