Thanks to an overwhelming response from people volunteering for this research study, it is now closed to new entrants. Don't worry if you missed the cut-off as there will be a further follow on study in a couple of months.
Thank you so much for your enthusiasm and support for this study!
Hi everyone,
I'd like to invite you to take part in this new LUPUS UK-funded research study led by the wonderful MelanieSloan . This study will be looking at the possible benefits of participating in peer support through small group emails, and it will provide an opportunity to be involved in deciding the research questions YOU feel are important/ what you want to ask doctors.
Below you can find the participant information sheet (1), flowchart (2) and consent statements (3).
Hi Melanie, Do the participants have to be in the UK? I would love to participate, I live in the States. Please let me know. This forum and community means the wold to so many, and me. Peace, blessings thestormy sunshine
Hi thestorm, I'm really sorry but for this study it is just for people in the UK. This is mainly for logical/ timezone reasons. Most of our studies will be open to all members of the community as we very much value everyone's views and experiences. If this study is successful, we may be able to open it up to all Nationalities, but do look out for our future studies as we'd love to have you as a part of them.
Paul, after four years of abuse from a GP POST-diagnosis and eight years TO diagnosis, I finally have an apology from said GP....enough for a claim ('full and unreserved apology for any harm, distress') but not enough for the damage done....willing and eager to participate in LupusUK research, with zillions of thanks to the wonderful Melanie
This forum has kept me going, and I thank you for it Paul xxxxx
I would more than happy to participate in research if you’ll have me as a Sjögren’s +CTD contributor rather than a Lupus sufferer.
The only thing I do find is that, due to my painful fingertips, replying to PMs and commenting on posts is becoming frustratingly time consuming due to the SFN pain causing typos, not helping my blurry vision and fatigue.
So I probably wouldn’t be a very good participant if much one to one or small group work is a requirement unless it was by phone or FaceTime.
Hi Twitchy, the study is open to people with lupus, UCTD, MCTD, Sjogren's, overlap and 'probable/possible' lupus/ CTD, so we would love to have you join.
Sorry your hands are so sore and fatigue is so bad at the moment, but the great thing about studies like this is that everyone understands if people can't contribute much at times as everyone is in a similar boat.
The initial questionnaire should give us some good data to publish showing what influences wellbeing etc, and if you get (randomly) allocated into a small group email support group (and possibly helping decide research ideas) there will be 6 people in each group, so everyone can contribute as much or as little as they like or are able.
Working together with so many great people means that every little definitely helps
Hi, some people have been emailing to say they are having trouble signing up to the study. I passed it onto the data manager who says that on some devices you had to click/ tap quite hard to agree to the consent statement box to pass onto the questionnaire.
He has hopefully now made it easier so please do try again if you weren't successful.
Thank you Paul. As someone whose diagnosis has gone from SLE to Bechets, then UCTD to Lupus again, then Fibromyalgia and hysteria ?? Now I am UCTD and Bechets again . The past ten years have been confusing, distressing and largely unsupported. This group means such a lot to me as people are constructive and so supportive. If I can complete the survey based on such fluid, contradictory diagnoses I am happy to do so.
Hi Cecily, so sorry you have had such a tough time. It is definitely quite common and so hard.
Yes please do complete the survey, many have contradictory diagnosis and the point of this study and the one following it is to highlight how people feel and cope, including with these contradictory diagnoses. Getting voices heard and understood is our priority.
The first research paper Mel and LUK got published just recently shows how much this community can add to the literature - and to move things on. So I do hope lots of people will be signing up - I know I shall
On a side note - well done on the publication of your first (of many 😉) research papers. A great and much needed contribution that's currently being widely read and commented on. (Information and link to the paper is in the pinned posts (second one down) if anyone is reading and hasn’t spotted it yet). Big thanks to all concerned 👏👏.
Very much looking forward to seeing further research being published.
I suspect that it may have been half-term week when the post went up - always a quieter time in the forum - so hopefully 'returners' will spot the post and join in the study.
Gosh, the government has found £46 million at the drop of a hat for research into a coronavirus vaccine while autoimmunity research relies on charitable efforts to bring it into the 19th century...hoping you have 100% by now!
Can't thank you enough for this incredible research...just knowing we've not been cast adrift on the diagnostic odyssey - as some medics do - gives me a warm glow! Thank you Melanie and Lupus UK, and every success with your fine work! xxx
Thanks eekt! Yes the response has been great, thanks to this fantastic forum.
Only a few more sign ups needed now so if anyone else wants to join the study, please use the link on this post and sign up in the next couple of days because it will probably be full by Tuesday.
Together we definitely have a stronger voice and can help support each other
Thanks so much Paul, and a massive thank you to everyone who signed up for the study. We've started looking at the combined responses from the questionnaires and they will certainly raise awareness. We will share all results with this great community as soon as we can.
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‘Living with Lupus in 2020’ Survey – LUPUS EUROPE
