Hi (and happy new year ☺️), in December I posted about a Cambridge University survey inviting patients to participate. The organisers would like to see more participants if possible.
If you're interested, here's a link to the original post: healthunlocked.com/pmrgcauk...
If you have any questions about the survey, you can contact Dr Melanie Sloan on mas229@medschl.cam.ac.uk
Fran
Think I’m already in their system -seem to recognise the name/email address 😊
completed 2022 and follow up 2024..
Hi. I had a go at completing the survey but, unless I missed something, the questions focused more and more on HRT and pre menopause symptoms. These did not apply to me as I'm 75 and I suspect many on here are post menopause as that seems to be the majority of PMR sufferers! I just got frustrated as there were no options to avoid the irrelevant questions.
Like Smithie, I became frustrated as the questions focussed increasingly on menopause and HRT, not relevant to me at 76
I agree. I am 80, and the bulk of the questions are about the menopause..and there is no way to click a box to say irrelevant. So I have wasted my time this morning - and as a NHS research assistant in my past, I would love to get my hands on this document and reset it.
You have an email contact for Melanie Sloane who is responsible for the study - if I were you, I would tell her. Most other AI diseases include many younger patients for whom the questions are relevant and it obviously didn't occur to them to include a suitable option. Poor design ...
I will do that - when I have time but I was so annoyed that I had wasted too many precious minutes that I have just been for a walk in glorious sunshine albeit nippy to shed the rage!
You've stolen our sunshine!!! It is disgusting here again - 2 lots of precipitation in 3 days is not usual! And it is raining-ish on frozen ground so I'm walking nowhere!!
It's treacherous here in Yorkshire - hard packed snow and ice. Only the main roads are OKish - the side roads and house drives are awful. Schools closed all week and bin collections cancelled. We're just not geared up for it. But the sun's shining here at the moment, so we may get a thaw soon.
Our forecast is suggesting it could be spring by the end of next week! Though it is renowned for changing its mind 4 times in a week ... Down in Bozen it could be 15C the end of next week and +10C here in the day after -10C on Sunday/Monday mornings! If the sun shines too, it will be lovely for an Aperol in the sun, despite Dry January. But since Tuesday the ground has been either a skating rink or covered in soft soap (the German word is so much more evocative: Schmierseife). Either way - not appealing!
But now the 6 public holidays in 2 weeks is past - back to normal except for the sun
Crampons? I use them even here in Suffolk. Be careful, frozen ground is like black ice - doom!
I do have some somewhere - but the effort to putting them on and taking them off is too much!! I stay at home!!
Ah, Aperol at home I hope!
Aperol spritiz (known as a Burdi here) is a drink for in the sun when you can sit outside - even in winter! So the pavements are also safe!!!!
I too found all the HRT and menopause questions frustrating. Assumed they might be looking for some kind of link - but it did mean I spent a lot longer filling all this in than I would have anticipated 🤷♀️
PMR, Probiotics and digestive diseases
Autoimmune diseases and mental health
PMR and learning about it!
Interesting article about evolution of humans and autoimmune diseases
