Our ADAPT study is investigating ways to support the mental health of people with lupus, and is run by the same team that conducted the recent INSPIRE study about neuropsychiatric symptoms that loads of us here participated in, so many of you will know Dr Melanie’s studies are geared to be life enhancing! The Adapt study focuses on methods to improve the quality of life led by patients with rheumatic diseases (all types of Lupus) - the participant info sheet explains:
Now we’ve worked with Dr Melanie & Co on a series of studies, we know our input REALLY TRULY MADLY DEEPLY counts: because every time our feedback has been processed + the results officially published, medics around the world have been responding enthusiastically: turns out many are as anxious about + eager for improvements in care of all aspects of our care as we are! 😅👏👏👏👏
You can find all the details about joining our ADAPT Study here:
PS snapped this yearling hare outside our kitchen window the other day. We think she/he was born right there because never a day passes without a few hours when she/he is mowing the grass on that stretch of lawn…it’s been such a JOY to watch tiny her/him growing up
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I've joined up Coco. I'm curious to know how medics will differentiate between symptoms that are caused by SLE, and mental health problems that are experienced bybSLE patients but not necessarily caused by SLE. If that makes sense?
One of my red flags for heading towards a flare is waking up and feeling completely and utterly depressed for no identifiable reason. I know me and I know when I feel low because something has triggered it, and I know the feeling when it is caused by SLE and they are very different.
👍 absolutely! You’re asking exactly the sort of tricky question that’s discussed at length in the recent INSPIRE study webinar…and I HOPE that recording will be on the Lupus U.K. YouTube channel soon! 💞
I can't Coco..I've got the wrong type of lupus. I don't have SLE and it's been mentioned that this is specifically for SLE. Your hare is gorgeous!! What a lovely view out of your kitchen window 🤗💜🌈xx
😍👋👋👋👋Am so sorry you can’t, but thanks for explaining! If you know someone you think could be involved, it’d be great if you’d send them this link.
Yes, this view out our window is VERY therapeutic 🤗…keeps me feeling ‘lucky🍀’, which makes all the health stuff that bit more bearable. Hope you’re doing as ok as poss, my dear friend…am always so happy you’re here on forum❣️💐🕊️
I'm having a good time at the moment thank you 🤗🧜Have recently changed from oral to injectable Methotrexate and it's made my symptoms just that bit more manageable so I'm making the most of it! 😹I even had a drive in the car..with me in the driving seat!! Oh my it was wonderful!! I haven't driven for years and I felt so free!! We went out to a village a good few miles away and I said to hubby that I'd like to have a go on the country roads n we swapped places. After a bit of a bumpy start I was away and loving it!! 🚗 😹
It's a shame that many of us are excluded from this study coz we don't have the type of lupus specified. I've never felt that I have ever been excluded until now..but hey ho I know this is nothing to do with you lovely 🤗
One of our members a few weeks ago who is a psychotherapist mentioned something called Enduring Somatic Threat (EST) and I've been looking into it. To my mind many of us have this type of threat as we don't know what's happening inside our bodies and many of us are continually threatened by our immune systems..SLE or otherwise. I'd be grateful if you could stick that in somewhere in this study please..seeing as your more than qualified to take part😹
I hope you are recovering well from your recent surgery Coco...I have been thinking about you n sending healing vibes 🤗🧜💜🌈🦋xx
& yes, me too: hoping our studies will continued so that all versions of lupus + lupus-like conditions are as much part of this work as SLE is. & meanwhile if you ask her, Mel will explain more.
Will check out EST now, thanks!
You’re dear to remember…am on go-slow playing ‘watchful waiting’ re that spine op last week…so far so good…it can’t correct the deformity & radiculopathy, but it may cancel out some of the nerve pain caused by that 2019 failed spine surgery 🤷🏼♀️🍀✌️💞
Hello Krazykat26, many apologies - this was an error on the sign up survey and has now been corrected as the study is open to all types of lupus, so please do sign up if interested.
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An interesting article from the USA
Anyone got any experiences of neurologists not understanding lupus please to share with CQC and hospital management (anonymously)
Stress and lupus
