We’re really excited to let you know about a new research project titled The Polymyalgia Paradox. We’re running this with the University of Leeds, and it's funded by NIHR, the National Institute for Health and Care Research. The project is investigating why low numbers of PMR patients are diagnosed in the north compared to the south of England.
Lucas Coutin joins PMRGCAuk as Northern Outreach Lead, to investigate the barriers to health in communities around Leeds over the next 18 months, whilst also spreading awareness of PMR.
One of the first things that Lucas will be doing, is contacting communities around Leeds to promote understanding of PMR and learn about experiences of accessing healthcare. To help convey the reality of living with PMR, we’d like to share lots of people’s experiences, from first symptoms of PMR to receiving a diagnosis. If you would like to share your story (anonymously) or find out more, please contact Lucas@pmrgca.org.uk
He's primarily looking for stories within the UK, but not necessarily in the Leeds area (although Leeds would obviously be great too!)
Fran
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Hello! Thanks for your question - there's no restriction on how long ago you were diagnosed (or not) when it comes to sharing your experience. I'd be interested to hear from you
Yes absolutely Lucas. We don’t give phone numbers or email addresses on the Forum, but am happy to let you have these via the chat facility or via email. Fran will know my email address.
I recently met a lady from a small village in Fife, Scotland, where 5 people had been diagnosed with PMR, including herself. It made me wonder if it is environmental or a very astute GP.
There are examples of such clusters that do suggest an environmental factor but that is known really - anything that stresses the immune system can be a trigger and some environmental factor may be the final straw. It is unlikely all the patients had identical previous histories though. Where was it - so I know not to move there, though I suppose the positive aspect is it has a ready-made support group!
I am extremely surprised to read that low numbers of PMR patients are diagnosed in the North compared to the South of England and wondered if this information has been taken from the number of PMR patients being referred to hospitals in the North or if it is to do with the membership of PMRGCAuk? From my personal point of view, I was diagnosed with PMR in May 2014, 9 years ago and, while I had never heard of it before then, I was absolutely surprised to hear how many other people around suffered from PMR/GCA. I regularly attended the quarterly meetings of PMR/GCAuk in Gateshead and understood that the average paid-up membership at that time was 230-250 people, including the Middlesbrough Branch. Every quarterly meeting was attended by between 20-30 members in Gateshead, and I understand around the same number attended in Middlesbrough. I believe the North East were the first Group to become a Registered Charity and many of us members were devastated when the Group disbanded towards the end of 2018 due to ill feeling within the group. I have noted Lucas's email address and will contact him direct with information I, and a few others, have about PMR/GCA in the North East.
No, nothing to do with HU, I think it is from the Keele University group who do large scale analyses of GP and hospital data.
The NE group was a the first PMRGCA registered charity in England - the Scottish group was already in existence and provided a lot of support to Mavis Smith when she was setting things up.
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A little moan about the research project!
Leeds research
RESEARCH PROJECT: 'Your Ears' - WE NEED YOUR HELP.
PMR diagnosis 
Alternative ways to cope with PMR
