PMR GCA Scotland

PMR GCA Scotland updated their address.

Just listened to a talk by Dr Sarah L Mackie entitled ‘Progress in PMR’. Sarah is Associate Professor in Vascular Rheumatology, University of Leeds and Honorary Consultant Rheumatologist, Leeds Teaching Hospital NHS Trust.
Sarah's talk was brilliant and showed that lots of research is being done in PMR and that patients’ views should and can be taken into account whether for treatment or research.
Well done, Sarah

The next zoom meeting is on Thursday 20th January 2022 at 11am. Prisca Gondo, a Clinical Trials Sister (Rheumatology) at Southend Hospital working with Professor Dasgupta, has agreed to speak.

The meeting will be by zoom and will last for about an hour.

Please note that this meeting is on a Thursday not a Saturday as the recent meetings have been.

This meeting is open to all members. If you have not received your invitation, please send an email to [email protected]. To join the charity, send an email to the same address.

Newswire was posted on Thursday 16th December second class. Should arrive before Christmas.
Some arrived Saturday 18th. Awesome at this time of the year.

DUNDEE GROUP MEETING CANCELLED

It is with great regret that we have decided to cancel the next Group Meeting planned for Tuesday 21st December.
Government advice on the 14th December on meeting with others from outside our own households, due to the increasing spread of the very infectious omicron variant of COVID, makes it impossible to meet safely within the church.
If the situation improves in time, then the plan for the new year is still to hold meetings on the third Tuesday of each month BUT PLEASE CONFIRM BEFORE ATTENDING IN FUTURE EITHER BY CHECKING THE WEBSITE OR PHONING THE HELPLINE

Issue 35 (Winter 2021) of NewsWire has been delayed. It should arrive with members before Christmas. Electronic version will be available on Wednesday 15th December. Sorry for the delay.

Looking forward to Dundee Group meeting. Restarting this week - Tuesday 23rd November in St Mary's Church hall in Dundee city centre at 11am. Anyone with an interest in PMR and/or GCA is welcome to attend. No charge.. How many will attend?

Great meeting today.New members welcomed. Questions about tocilizumab, steroid reduction, adrenal insufficiency tests. Very well received. Next meeting to be arranged in January 2022.

Next zoom meeting is Saturday 20th November 2021 at 11am. Open to all members. If you want to join the charity (no charge) then please send an email to [email protected]

First face to face group meeting for ages

After a long period of meeting on a computer screen or not at all, Dundee Group are going to have their first face to face meeting since early in 2020. This will take place in St Mary's Church in Dundee on Tuesday 23rd November at 11am. For details look in the Group & Meeting Dates section of the home page of the website.

PMR SURVEY

Dr Sarah Mackie, Lorna Neill, Margaret Grover (both from the PMR community) and Amy Rebane have created a survey to hear from people living with Polymyalgia rheumatica (PMR) in 2021. We want to come up with ideas to make things better for people with PMR. If you have ever been diagnosed with PMR, we want to hear from you.

The survey should take no more than ten minutes to complete and will ask you to think about a “meaningful moment” that you have experienced along your PMR journey. It could be a big thing, or a small thing, but what matters is the significance and meaning that it has to you.

Once you have completed the survey, you will be invited to attend a workshop where the consented “meaningful moments” will be anonymously shared and discussed. From this we hope to pull out even more insight about the experiences of PMR patients. More details about this are included in the survey.

The survey can be found https://leeds.onlinesurveys.ac.uk/pmrvoices2021

The survey will close on Monday 25th October 2021.

PMR Voices 2021 Survey Online survey BOS

NEXT ZOOM MEETING

Next zoom meeting is Saturday 23rd October at 11am. If you are already on the list of members then you will be contacted on Friday 8th October. If you don't hear by then or want to join then please send an email to [email protected]

Next national zoom meeting is to be held on Saturday 25th September 2021 at 11am. Link has already gone out to Members. If you want to join the charity then send an email to [email protected]

Death of one of our Helpline volunteers

It is with sadness, we announce the death of Liz Benneworth a Member of the Dundee Group and a volunteer on our HelpLine. She died suddenly on Saturday 21st August and her body went for medical science as she wished. The thanksgiving service for her life was held in Perth North Church on Friday 17th September. Trustees went on behalf of the charity. If you wish to see the service access https://youtu.be/R7lNfGG08Ow before 17th October.

17 September 2021 - 10am Service of Thanksgiving for Liz Benneworth

Next national zoom meeting is to be held on Saturday 25th September 2021 at 11am. If you are already on the list you will be contacted shortly. If you want to join the charity then send an email to [email protected]

Issue 34 arrived from the printers. Will be posted on Thursday 12th August so will be with you on Monday 16th. Enjoy the read.

SUMMER NEWSLETTER

Issue 34 (Summer 2021) of NewsWire is getting close to publication. Hopefully it will be posted on Thursday 12th.... now where did I put the envelopes???

Our sister charity in the UK are holding 2 webinars on Tuesday 8th and Wednesday 9th June. See article about joining the webinars.

We are hosting two webinars during PMRGCAuk week and everyone is welcome. The first one is Tuesday 8th June at 11am BST on the subject of Living with GCA with vasculitis specialist nurse Georgina Ducker and the second on Wednesday 9th June at 2pm BST on the subject of Polymyalgia beyond steroids with consultant rheumatologist Dr Vadivelu Saravanan. Members and non-members are welcome to book one or both webinars. To book, email [email protected]. If you have PMR or GCA, do consider joining the charity - it's only £15 per year and you have access to all of the webinars we run as well as our magazine, our annual members' day and you will be helping to support the charity with your interests at heart.

NewsWire has been posted out to all members of PMR-GCA Scotland. Should arrive this week. Digital copy to be released on Wednesday.

SPRING NEWSLETTER

Issue 33 (Spring 2021) of NewsWire is at the printers. Planned to be available Wednesday 14th April. Watch this space.

Zoom training course for PMR-GCA Scotland members on Thursday 15th April at 1pm. To book your place email [email protected]

NewsWires are in preparation. Hopefully will be distributed in first half of April.

NEXT PMR-GCA Scotland ZOOM MEETINGS

Next zoom meetings are to be held on Saturday 17th April and Saturday 15th May 2021 at 11am. Topics to be announced.

Open to members. To join email [email protected]

The talks recorded at the annual meeting of PMR-GCA Scotland on Friday 19th March 2021 are now available

They talks were “GCA diagnosis and treatment in NHS Lanarkshire” by Dr Anna Ciechomska to be found at https://vimeo.com/528577287 and

“Monitoring disease activity in large vessel vasculitis” by Dr Dan Pugh to be found at https://vimeo.com/527908451.

Both very well received. They are excellent talks and we recommend that they are worth watching. Anna’s talk is about 50 minutes long and Dan’s about 45 minutes.

Talks were followed by AGM.

Anna Ciechomska AGM 2021 Presentation.mp4 This is "Anna Ciechomska AGM 2021 Presentation.mp4" by PMR-GCA Scotland on Vimeo, the home for high quality videos and the people who love them.

Today was the 2021 annual meeting. 2 talks entitled "GCA diagnosis and treatment in NHS Lanarkshire" by Dr Anna Ciechomska and
"Monitoring disease activity in large vessel vasculitis" by Dr Dan Pugh.
Very well received.

NEXT ZOOM MEETING
Annual Meeting with AGM on Friday 19th March 2021 on-line using zoom starting at 2pm. The finish time will be before 4:30pm.

Includes 2 talks:

GCA diagnosis and treatment in Lanarkshire by Dr. Anna Ciechomska, Consultant Rheumatologist, NHS Lanarkshire

Novel imaging techniques for large vessel vasculitis by Dr. Dan Pugh, Clinical Research Fellow, University of Edinburgh

Followed by AGM

Open to members. To join email [email protected]