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
‘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.
Written by
MelanieSloan
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🤩 and a BIG THANK YOU to you Melanie + Lupus U.K. + everyone here on our wonderful forum across the U.K. + around the globe who is involved in this groundbreaking project...the great media attention we’re getting + the enthusiasm & acknowledgement our clinicians are showing BLOWS MY MIND: HURRAH👏👏👏👏❣️❣️❣️❣️
I’ve spent my lifetime with lupus, wondering if/when we’d finally be HEARD...and NOW, cause of EVERYTHING we’re doing together here + the 🌈🦋🦓🐺💫MAGIC Melanie & Lupus U.K. are working, WE ARE BEING HEARD & OUR CLINICIANS ARE LISTENING + showing they really are determined to step up actively to reform the diagnostic & treatment process!
It’s an honour to have joined Dr Chris Wincup for this interview... Louise the interviewer was GREAT & Chris did a fantastic job...both Melanie & the journalist Katy Prickett helped a lot to prep me, thank goodness - cause the day before I’d had a long afternoon @ hospital being poked & prodded by neurology, only to get home & discover neurosurgery’s recent MRI indicates I need more spine surgery 🤦🏼♀️. But thinking of you ALL + having watched + listened to the great interviews Melanie & others here have been doing already + Chris going first in this interview helped me to do the best I could 🤷🏼♀️...now it’s YOUR TURN 😅😉
If you haven’t seen Katy’s brilliant recent BBC article on lupus and the effect COVID has had on our care, here’s the link - it features interviews with our hero Melanie & several other lupus patients:
I LOVE you folk...you’ve saved my life (Hey: you REALLY TRULY MADLY DEEPLY HAVE) and I’ll never feel I’ve thanked you ALL enough for EVERYTHING ❤️🍀 Coco
Thank you so very much for adding your very experienced voice which was concise & clear considering being poked & prodded the day before.😲
🤞 🤞🤞it will highlight, as you so rightly say.. to a less slow, traumatic & damaging diagnosis that many have had, or have to face.
The damage that is done by -the unbelieving look, sigh, comment or insinuation that its all in our head is utterly destructive & demoralising to both our physical & mental health, & walking out of that consulting room with our hearts on the floor is the worst😥
.. & I am so sorry to hear you need more spine surgery ..sending hugs🤗🤗
Thank you to each & everyone who was involved , you are our heroes & our voices
😍Oh daisydaz, thanks 💐...most credit goes to our 🌟 Melanie & Katy the journalist who helped me get my head ready...I feel honoured to have had this chance to speak up...and, now, chatting it over here thanks to Melanie’s post & your good company is like having 🍒 on top: feels GRRRRREAT❣️🍀
Thank you for posting this. Although thank you doesn’t seem anywhere enough. You’re working tirelessly to raise awareness and improve care for lupus patients.
I, for one, am extremely grateful for your huge contribution. I don’t know how you’ve done all this, especially having lupus yourself and having been so ill during the last year. Amazing.
Also a big thank you to our expert patient Coco, who has helped me no end of times here, to unravel my version of lupus. I am sure there are many others here who’ve been helped by Coco over the years and here she is contributing to research at the University of Cambridge.
Yes! I’ve been toying with the idea of media coverage for my campaign in Wales for a while, but various things stopped me. But with Mel’s research gaining momentum in the media, I thought it might be a good idea to jump on the bandwagon. My interview is for a written piece. I’ll post a link in due course. Nerve wracking! xx
You were really eloquent. It took a lot of guts given you were unwell.
So so so so SO - happy the message is getting out there in such great detail - regarding the problems we have. I hope it leads to even more interest, research and coverage.
Just read the article you provided. Its an excellent overview.
Gosh, thanks: 🤝means A Lot To me! You know, if I’m ever able to summon up eloquence on this subject, it’s definitely down to your influence...to 11 years of reading you & other good folk articulating the 🦓life here...🤩you ALL take my breath away ❣️✊✌️
Stop it - you're making me blush - Thankyou - It is an amazing community - with such depth of human experience and suptle insight into the ups and downs of this illness. 🤝🙋♀️😀
Before I came here six years ago I was utterly traumatized, extrodinarily angry and very confused from repeated delay's in diagnosis. I was so ground down I felt I must have been the only one on the planet who'd been through this - and there must have been something very wrong with me - for this to happen and for me - and wrong with me for me to allowing it to happen. All these thoughts were going on while not quite being able to make complete sense of what the medical establishment had done to me.
It was such a relief to find out I wasn't alone - that my reaction to these trauma's are perfectly normal and acceptable - and it wasn't my fault - and now there's so much information and research to consolidate these facts.
Its just been so healing.
Every publication and article just feels like more support.
I now clearly understand that validation from Doctors is the only acceptable response.
🤗 was just giving you my ‘truth’- straight from ❤️+🧠...I feel your presence here, your ‘voice’, has been & still is KEY to our evolving collective consciousness...am so glad you found us 😘
😍 thanks baba...i feel the solidarity here from you & everyone else is so powerful that we seem able SOMETIMES 😉 to summon strength for doing things like this despite strains from our 🦓health + the other probs life inevitably offers up...thank goodness for .Lupus U.K.+ our own special activist researcher Melanie ❤️🍀
Melanie you have done, are doing SO much for lupus awareness, it’s enormously impressive to read your findings in journal articles that are reported. THANK YOU!
Many thanks Melanie, Coco and Dr Chris -- first class job - well done. I have written to my local bbc radio station to ask whether they can transmit the interview on Radio Shropshire too. The more publicity the better. Lupus is such a rare disease (my GP says he has 3 cases in 7000 patients) it is good to have a voice to enlighten the general public re -- what it is like to have Lupus and also the effect when your only hope of medical advice suddenly vanishes and/or can only speak to you over the phone when he cannot see (with his eyes) how ill you are and cannot examine you to determine exactly what is happening physically to your body.
Fantastic Melanie and Coco. You are both inspirational. To be able to talk with such knowledge and clarity is amazing. I admire you both so much and am grateful for all the effort and passion despite the immense health challenges. Thank you both so much ❤️❤️👏🏻👏🏻 Xxx
🥰 Thanks CecilyParsley ❣️💐...TRULY: the way Melanie & LUK are bringing us all together (patients & medics) is working THE most WONDERFUL 🌈🦋🦓🍀🐺💫 MAGIC👏👏👏👏
For all of us who feel so helpless and unable to be heard, massive appreciation to you both for caring enough and having the courage to speak out despite struggling with life and Lupus.
It is so uplifting to know that people are now being educated and clinicians becoming more enlightened at last! xx
🥰Thanks... it’s a strong beginning, especially because Melanie & LUK have the sorta tact & diplomacy that helps our medics to willingly partner up with us for this campaign...and this couldn’t be happening without you + everyone here...seems to me our years of true dedicated friendship + solidarity here are bearing the most beautiful fruit 👏👏👏👏🤝✊✌️❤️🍀
Thanks so much to everyone for their comments and support.
It's not just the study team though, it's only working so well because it's ALL of us on here too working as a team together to improve understanding and lives of people with lupus and other systemic autoimmune diseases, so thank you to EVERYONE
On that note - PLEASE try and get around to completing your LISTEN survey TODAY if you're well enough please. The results will really make a difference and the NHS is actually interested to know our results and use to inform policy but we need the surveys completed to do this please!
(you'll know if you were part of that study because you'll have been several reminder links - I always forget too until the last minute with surveys!)
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