LISTEN Study Participants - Please complete your latest questionnaire!

[Paul_Howard]

Hi everyone,

If you signed up to the LISTEN study being run by MelanieSloan , please complete the latest study questionnaire.

It should have arrived in your inbox on Monday and Thursday but the researchers are warning that for some people it is mistakenly ending up in their junk/spam - so please check there too!

This research is also now looking at experiences during the pandemic and will be used to help provide evidence of the medical support needed going forwards, so it is very important for the lupus community.

Please make an effort to complete it!

If you have any questions, you can email [e-mail]

[Freckle1000]

I have no idea what this study is about - but I was a participant in the 'Is it me ' one.

Recently my bloods showed I was well and truly in remission - but I felt like I was flaring. A Rheumatologist re - diagnosed me with fibromyalgia - but I'd also sent her the complete study - which was confronting to her - ( she was angry ) and after a bit more discussion about the symptoms in this context - she ordered an MRI of the brain ( demyelination protocol ). I don't think I would have got that scan without the research paper.

Turns out the Lupus was simmering away in the brain - that had caused a patch of white matter damage - that would still be deteriorating from ' Fibromyalgia ' if this Rheumatologist hadn't read the study.

I live in Australia - and its having an impact here. She's a senior Doctor and one of her research areas is making lupus diagnostic criterior more concrete. So important for us medically and legally. I'll be sending her everything published here - might help her not to stray too far off reality.

I know you're all doubly traumatised over there - but I'm begging you all - please participate in this research. It's already changed things here for me.

[eekt in reply to Freckle1000]

Oh good lord Freckle1000...I'm so glad things are changing for you...but so angry at the way you've been treated for so long....the only way is up! 👍 🙃🌈 xxx

[Freckle1000 in reply to eekt]

Oh good lord I hope so too. 😳🙃😳🙄😁 X

There's nearly always a positive shift of understanding whenever I get anybody to read it - whether its a family member or friend - who - after years - finally 'gets it ' - or a disability fund that otherwise wouldn't have a snowflakes chance of understanding lupus as a disability. It helped me qualify for the (oz) National Disability Insurance scheme which provides supports I've needed for so long - including medical advocacy. The paper helped made it clear that it was a high priority of their funding for me - and I was told it was a fairly rare thing for them to do.

These research papers can bring on such profound change.

[eekt in reply to Freckle1000]

That's SUCH good news Freckle!!! 😁 I'm so pleased for you....it's been a looooooong time coming and you deserve it so much! 👍 Medical advocacy now there's a thing worth having! I did ask a local small charity when I had no route to getting my GP to believe I wasn't lying about my diagnosis (GP's are unregulated in Scotland other than GMC..)...but they only offer it for people with MH problems...which I was trying to convince my GP I didn't have...🙃

Yes, this research is changing the lupus world for the better....long may it continue !

Be well xxx

[MelanieSloan in reply to Freckle1000]

So good to hear that Freckle

[MelanieSloan]

Thank you Paul, and thank you to everyone who participated and the many of you have already completed your final survey sent out this week.

If you haven't completed your survey yet, please please do try and do it because these studies are a chance to get the combined patient voice heard by doctors and policy makers and ensure post-pandemic changes to care (such as telemedicine etc) plans take into account patient views and preferences. You will be making a difference for everyone with lupus and related diseases.

As there are only just over 100 people in this study, each person's responses are very important and the study won't get taken seriously in the research and medical world if we don't get a high number of people completing their surveys. We have over 50% returned already which is fantastic when the survey was only sent out Monday. If you are well enough please do complete yours (preferably by Wednesday 10th March so we can enter you into the prize draw the next day to win £100!).

If you are in a flare or don't feel up to it all, please try and complete the first few questions (if you are well enough) or email me on [e-mail] and I can help. I know the joint pain and fatigue can make surveys difficult. I often forget to do surveys myself until reminded several times so no judgement at all! Just please do it if you can - we have found from our studies so far that we can really make a difference together!

Thank you very much

[eekt in reply to MelanieSloan]

Thanks for all your amazing hard work Melanie...it's great to see things moving in the right direction...I'm so impressed with how far you've got, with BBC interviews n'all!!! Keep it coming! xxx

[eekt]

Thanks for all you do for us all Paul...our hero! It does take a while to get through all the questions, but it's VERY, VERY worthwhile bearing with it, as Melanie's research has been on the BBC!!! ICYMI bbc.co.uk/news/uk-england-c...

The BBC used to refer to lupus as 'joint pain and rashes'....Melanie 's changed that!!!

Gosh, and there's a brand new story (6th March 7am) on the BBC about Wales! bbc.co.uk/news/uk-wales-562...

with diagrams! xxx

Lupus signs and symtpoms

[MelanieSloan]

Thanks everyone who has managed to complete their final LISTEN survey. If anyone has not got around to yet, it would be great if you could do it ASAP please

The sooner we get the surveys back, the quicker we can publish the results and influence care for this stage of the pandemic.

Thank you!

[Paul_Howard Partner LUPUS UK]

One last final reminder! If you are taking part in the LISTEN study and haven't yet completed the latest questionnaire sent to you by email, please do it now.

[MelanieSloan]

Thanks Paul and everyone in the study.

Deadline to be entered in the prize draw is TOMORROW - WEDs 10th

I know surveys can be pain to do but they really make a difference to getting the community voices heard so please do try if you're well enough, or email me ([e-mail]) and I can help

[whisperit]

I've done one, and its not difficult. Whats brilliant is that we are getting coverage on the BBC as a direct result of this study. Please do help out, x