Hello, I hope everyone is as well as possible.
The media has been very interested in our recent research on how care for lupus patients has been affected by the pandemic, and how diagnosis and life is tough at the best of times for people with lupus and other similar autoiummune diseases.
Yesterday, one of our fellow forum members, Coco, and Dr Chris, a London- based rheumatologist researching fatigue in lupus, did a fantastic job of raising awareness of the difficulties faced by both patients and doctors.
Here is the link:
Breakfast on BBC Radio Cambridgeshire - Louise Hulland 04/03/2021 - BBC Sounds
It is at 1.44 to1.55 into the programme.
They are both important members of our research team looking at improving the patient-doctor relationship and lives of people with lupus and related diseases.
Here is how to access three of the research papers that they were discussing:
The impact of the COVID-19 pandemic on the medical care and healthcare-behaviour of patients with lupus and other systemic autoimmune diseases: A mixed methods longitudinal study, in Rheumatology Advances in Practice, 14 December 2020 doi.org/10.1093/rap/rkaa072
(Is it me? The impact of patient-physician interaction on lupus patients... ) doi.org/10.1093/rap/rkaa037)
‘But you don’t look sick’: a qualitative analysis of the LUPUS UK online forum, Rheumatology International,l doi.org/10.1007/s00296-020-...
Thank you so much to Coco and Dr Chris, and to everyone on this forum, for working so hard to help us all raise awareness of lupus and the challenges we face.