Volunteers for Research Project into fatigue in PMR and GCA Leeds, UK

[SheffieldJane]

I have just completed my few month stint as a volunteer for research into the fatigue associated with our conditions. It involved travelling to Wharfdale Hospital every few weeks. Wearing a step counter, keeping simple diaries of activity, sleep etc. having various health checks, bloods monitored, symptoms followed up. Responding to telephone interview in between visits. Good training for the pro- active patient and a very worthwhile aim. They have funding to extend it for a few more months. If you are interested phone Sally Smith ( Dr Mackie's secretary) at Wharfdale Hospital on

TEL. [phone]

Must be able to get to Leeds or Otley. ( and be tired).

[Patience_1]

Your last comment made me laugh - how nice actually to have a reason and need to feel washed out! Unfortunately I'm a bit too far away, in South Cheshire. I've noticed your comments about your step counter. I too use one, and find it really helpful in motivating me to move just that bit more than I really want.

[SheffieldJane in reply to Patience_1]

Yes being exhausted doesn't qualify us for much does it? My step counter motivates me too, this rain hasn't helped me meet my target. Doing several loads of washing, putting them in the dryer then putting them away yesterday uses an amazing amount of steps. Having my grandson beats my target every time, potty training, so some sprinting even. I still need to sleep but I am happier and more flexible.

Come on Yorkshire folk! I was lucky my long suffering OH drove me from Sheffield to Otley or Leeds and set up his remote working in the quiet waiting room with wifi.

[Jackoh]

Don't qualify for the first point but just the last one ! As many more on here must do. Good to know we qualify for something even if unwanted!!

[Bethy]

I would love to take part in this project, but Leeds is a long way from West Sussex. Well done you for taking part with this valuable research, and am looking forward to reading the results when they become available.

[Marlenec]

Hi Sheffield Jane

Just seen your post - I saw Colin Pease on Friday at Wharfdale and actually told the nurse that if any research volunteers were needed to contact me, but she did not mention this!

I shall ring Sally tomorrow - thanks for this post.

I also have a step counter a Fitbit HR which I love and it's helped me lose nearly a stone, since May!

Take care and do lots of steps.

Marlene

[Marlenec]

Hi Sheffield Jane

I rang Sally yesterday but answer phone says she is not in until 22 August. I left a message saying I would very much like to volunteer for this research, so I'll have to wait and see.

[SheffieldJane]

My contact there is Hannah Mathieson ( Rheumatology Registrar) she gave me Sally's details for the research project. I do hope they get back to you. I found it an empowering thing to do from a purely personal point of view. I'd be tempted to try again after 22 August and give Hannah's name.

[Marlenec]

Thanks Sheffieldjane it's in my diary to do that and it won't cost them as I have a Fitbit.

[SheffieldJane]

I expect they'll give you a Leeds University Fitbit, there is a belt they give you for the Fitbit and another device of about the same size that feeds data direct to the research computer. I have bought myself one because I have to send the research one back. It really combats my initial reluctance to move - it's all " I'll go I need the steps".