Lupus, rheumatology and other autoimmune diseases patient survey from the University of Cambridge.
This survey asks about your medical relationships, disease symptoms, and health. It should take around 30 minutes to complete (you can pause or stop at any time). We are supporting this study as it will raise awareness about important issues and where more support may be needed, but it is entirely up to you whether to take part.
Everyone who enters can choose to be entered into a prize draw with two prizes of £200 being drawn once the survey closes (likely Jan/Feb 2025).
Thanks so much for sharing the survey Debbie! This group has been instrumental in being part of changing care by completing past surveys so we are hoping lots of people will complete this one please 🙂
Currently in the midst of most of what was asked in this survey and it feels like there's no way out. If I seek help for physical symptoms, I get told they're "probably anxiety" or somehow mental health related. Mental health worsens as a result of physical symptoms not being treated, but if I see a clinician about that, then it just reinforces the belief that everything must be caused by mental health. I'm just hoping the physical symptoms don't continue to get worse like they have been doing, as I dread to think where this will end up.
Some doctors are better than others. From this forum one can tell that diagnosis can depend on who is seen and in which hospital and which era.
If bloods are not positive, and in the past they did not have to be, then I think some feel we do not warrant their care.
In the survey I found some of the questions after giving my age were about menopause being blamed. Although the right age fortunately that was not an issue. That was never discussed and I don'trelate to it being an issue either. I understand that for others this might be different but for me the issue was probably negative blood results stipulated by the 2019 Classification criteria intended for research only, excluding me from care.
Being'in my head' was the reason given for symptoms by local NHS. The letter to my GP saying I was too anxious but diplomatically at the end mentioning that it could be an Undifferentiated Connective Tissue Disease but that was too difficult for them to diagnose. This speaks volumes of specialists not being trained and /or (and probably more likely) the scope of their 'allowed work' not being broad enough to see us in the first place.
Needed to go private without insurance for help and that help has been amazingly successful. At the moment, I feel better than I have done for well over a decade. Photosensitivity is reduced, fatigue has gone, POTS symptoms have disappeared, much better mood, sleeping better, eating less, hardly any fevers or joint pain, the list goes on. I also feel a better drug combination is offered than would have got locally, where drug regimes, I cynically believe, might probably exist in part to maximise the number of research candidates.
The two drugs I'm on (Hydroxychloroquine and Mepacrine) are relatively cheap and don't make profits...Mepacrine can't even get licenced. Research on cheaper drugs has not the same quedos. I have not needed steroid since being on this combo.
(One symptom has completely gone that has troubled me for 25 years - and remarkably this is proven by simple blood results taken this year, but this has more to do with improved glucose tolerance than autoimmunity.)
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