Where the Vikings crossed from the North Sea into the Atlantic.
Not specifically aimed at anyone in particular I just want you all to know that progress is ongoing and it is still uphill work.
There was less before 2007.......................progress has been made and will continue to be made.
PMR GCA uk and PMR GCA Scotland, both operate on a shoe string. PMR GCA uk, only has 2 part time workers, the rest are volunteers, as the support groups are run by volunteers. Scotland has volunteers only.
Patients on this site and Patient info, many of them do not join and pay membership fees, or even send a one off donation.
Just in case you think, who is she to say this out loud.
Yes, I am one of the original five who met on Patient info, (2 who are still active and volunteering) got together with another 19 people and Professor Bhaskar Dasgupta (the one man who had a dream) paid for a meeting place, tea/coffee and lunch in London, The remaining 24 paid their own way (from all over the UK) and for the majority that meant an overnight stay and for 2 people - a taxi 283 miles each way - (as the rail lines had failed) on 14 March 2008, that meeting decided to set up a charity to support, raise awareness, set up support groups and finally research (the latter being very expensive . Scotland already had a charity, run by one lady, - to whom I owe a lot.
Our small set-up (3 at first then 6 all volunteers (only one who did not have either PMR or GCA ) in the North East, managed to make a DVD on both for Patients and Families and also a booklet called 'Living with PMR and GCA'. We applied to the Regional Lottery Fund and managed to get £10,000 over 2 years...........which enabled us to produce the above and also the Conference in the Centre of Life, where we launched the DVD and the Charity and I met PMRpro. Open a website and produce a Newsletter, both called 'You are NOT Alone' just like the DVD.
Over 12 years we managed the following:
1) Due to a legacy from one of our members, to donate £8,000 to Sarah Mackie to enable one of her med student to raise the rest of his fees to go to Spain for one year to study Micro- vessel imaging in relation to GCA.
2) We also funded the NHS, with £1,000 for the research project 'Your Ears'. Before we could get them interested, one of my Consultants talked to us about what he had found.......so we did a lot of background work and we proved this research needed to be done. Only the NHS will undertake research, when the end result means there is not money in it.
That research resulted in the 8th Cranial Nerve involvement paper published last year, which hopefully will be added to, in the future, the diagnostic procedures.
3) Dr Helen Twohig (researchgate.net/profile/He...) We helped with her research and does sterling works with OMERACT, just like Sarah and PMRpro and Lorna.
4) Then when we closed down last year, we gave the QE hospital, one of the Consultants Saravanan Vavidelu who had been with us since day one as a patron, just like Sarah, £10,000 to train GPs in the North East and Cumbria
This is the project in PMRpro's reply "Send a copy to Sarah - who is to be involved in a GP training scheme in the north East".
How many members did we have - not many in the great scheme of things:
We started out with 13 in Gateshead and 24 in Middlesbrough and 2 Consultants who helped us till the end. The biggest membership we ever had was just under 200. Membership fees were £5 to start and finally ended up at £12. Family, friends and carers who came to the meetings - no charge at all.
Members who were patients and their family and friends, raised money for us constantly . The man who now runs the North East Support Group and members of his family ran the GNR each Year and another Trustees daughter and Son-in Law did the same.
There were other notable people - who walked, ran, swam, baked, started up a Group Walk who paid £1 to walk with the group once a week and ended up always in a Cafe and raised over £2000. A teacher who developed PMR and her class raised money then the school adopted us. I could go on and on.
Believe me, the last 12 years have made a big difference - more GP's do know about GCA & PMR, there is now a Fast Track System in place in some hospitals, but an underfunded NHS, a shortage of Consultants, GP's and money to train staff on new equipment means not all are able to put it in place.
Rome was not built in a day, however I wanted you to know, that you can make a difference if you put your shoulders to the wheel and see what happens.
And every penny you can spare.................it is welcomed with open arms and a big many 😊😊😊😊😊😊😊😊😊😊
Well I think I have said enough and in a way, that is my rant over.
I leave you with this: which was launched in a Press Relase in August 2008: and you can still fill it in - costs nothing.
Furious Five’s Trans-Atlantic Hunt over Baby Boomers Mystery Illness
IS IT A FIRST? INTERNATIONAL ONLINE SURVEY LAUNCHED DEVISED BY PATIENTS FOR PATIENTS LOOKING FOR A CAUSE AND CURE FOR MYSTERY ILLNESSES PMR AND GCA (POLYMYALGIA RHEUMATICA AND GIANT CELL ARTERITIS)
Patients from the UK & USA have collaborated to devise and launch a Global Online Survey, which will provide data, free of charge, to Patients, Researchers and Medics. It could be the biggest online survey (quantisurve.com/cgi-bin/pmr...)
of its kind ever and may help reveal the cause(s) of two debilitating, life changing illnesses.
The full release is available via a PM with your email.
jinasc also known as Hel, and mrsK. Who had GCA and got out of her pram when she discovered that no progress had been made in 21years - how did I discover this, my Mother had both 21 years previously.
Good Grief asked me to edit this post and add the bit below.
This is a brill.post that hopefully let's everyone know what's gone on for us to be at this stage. Thanks for all the work done by you and the others YBB
Grammy80 that is lovely news to me and it also means that I did something with the 'rant'. Apart from letting off some steam.
I know how happy it will make you to know you are helping a charity in the UK...........so Thank you. Remember that everyone who uses this forum will benefit and thank you.
Fran also deserves a thank you, her work load was added to and never a complaint was heard. Onwards and Upwards ins small steps. 👍
It really was important to me to be a contributing member...and to do a little something each month. It would be impossible for me to put a value on the impact all of you here have had on my journey...totally altered my course and continue to be my guide. There is nothing like this available in the states and I know every little bit helps.
Fran was absolutely wonderful in working with me to make it happen through
virginmoneygiving.com. Anyone could write to Fran to start the process.
You have been here for me....and I am grateful. xo💖
Fran was involved, it was Constance who posts on here and wanted to make a donation and join. We did get around the problem and Constance is now a member.
Our Vice Chair set up a Paypal account, when we were selling the DVD, we found out when people looked on our website and wanted copies of the DVD and then the booklet. Yes, they went out to the USA,Canada, SA, NZ, Ceylon and every European Country.
Do not ask me how, I always left the Treasurer and the Vice Chair to deal with finance. 'I just asked, can we afford this'.
Thank you for this information. It’s helpful for those of us dropping in after the action and hard work to get things up and moving. I had hoped to do a fundraising event. Early this year but alas life had other plans for us.
Afraid my liveliehood had to come first. Self employed business just gradually gaining thin ground only to be thwarted again. Business shut down and don't qualify for govt help so still trying to pay for premises myself off brass tacks. I think I've done pretty well just to retain some students online to stop me going under and having to become my mums primary carer. Oh and there's my Masters Degree I'm supposed to be studying and turning in assignments for. In between flares and exhaustion due to the anxiety of keeping house, family, work, studies, health and sanity together. Love Tom Moore dearly and what a hero but hey, there are aspects of his life which are sorted and that he doesn't have to worry about like, income, pension and keeping a roof over his head. I think given the circumstances I've done pretty damn well actually.
Hang on in there, this will pass and the phoenix will rise again and so will you. You are dealing with an auto-immune illness and are under terrific stress.
This situation reminds me of waiting till GCA went into remission.................I just hope it does not take 5 years like my GCA.
Take care and try to look after yourself..........xx
Thanks for that. There is the song "Ready to rise again". Think it's by Gabrielle. I play that every day while getting up and getting on with it. They still don't know if GCA is part of my conditions because no one took notes about the headaches I was experiencing at the time I was asking to be tested for an auto immune condition. Apparently we won't know as I was put on 50mg right away when that on the ball locum spotted my blood works. We are 3 years into PMR and stuck at 8 mg just now but like yourself it's a long journey. Hope you are keeping well.
Can I just say that every time I see your name it puts me in mind of getting out the pink gin.
I always play "I get knocked down and I get up again" by Chumbawamba. It's beat helps me work out the anger and frustration. Good luck, you'll get through this.
Think anyone who did that is doing extremely well. My daughter is in the middle of an MSc and should be doing a prescribing module at present - but that means being at work and she is highly vulnerable (dodgy lungs and kidneys) so shielding. Deadline is September for getting onto the placement bit. She isn't a happy bunny.
Many thanks for this - I am now a Trustee for PMRGCAuk, giving back to an amazing charity who have helped me so much in my PMR journey. Membership is vital for our sustainability so I hope more people will join us.
Thank you for this potted history which has filled in a few blanks for me. I'm one person who is very grateful for all the work that took place during those years when I had never heard of GCA or PMR and just blissfully assumed that I would never fall ill.
When I was finally diagnosed with both conditions in July 2017, after 4 months of mystery suffering, I was relieved to find that there were explanations for what was happening to me and that in the long-term I could expect to recover. I went home that afternoon, googled around and found this forum and as a result was led to the charity - further relief to encounter other people with the same conditions and to know that some medics were interested enough to research them. I pay a small standing order to the charity each month and hope to increase the amount when possible. I'm very impressed and deeply grateful that so much is achieved on such a tiny budget.
I tried to send a donation through the Virgin link, but when I tried to press the pay by card button, it kept sending me back to the gift aid area. I was caught in a constant cycle and couldn't get any further. I'm sure the fault is mine as I've had no end of difficulties with moving around complex IT sites.
I'm too embarrassed to do this. You helped me out the other day and I'm grateful. I'll send a check directly to your office (I'll do it in the next couple of days). Thank you for your help
Thank you. And please don't be embarassed, technology confounds the best of us Are you UK based? If so a cheque is great. But if you're US based then the fees are high to process...£10 the last time I asked
I gave it one last try on Virgin (and went through the donate button on the PMRGca Uk Bulletin), but it still goes into a circle and I keep getting the same page, So I won't be sending a donation via Virgin in future. I'm in the UK and will contact you soon
Thank you 43tripandskip. I'll look into that. When you say you used the link from the bulletin do you mean from the website or from our newsletter, an email or something else? If I know where the problem is I might be able to do something about it for others. Fran
Hi 43tripandskip and Poopadoopy - quick question for both of you. Do you know if you have an ad-blocker or privacy software on your pc/tablet (whatever you were using when you used the virgin money donate site )? If you do then that can cause problems.
I have one on my pc and I just made a donation through our donate button. However the process froze partway through: it told me what my donation was and what my message was but didn't go any further. It told me not to refresh or go back but there was nothing else to do. Then I disabled my privacy blocker and the page refreshed to allow me to input my credit card details and then everything went through fine.
Just thought I'd mention it because more people have these ad-blockers on their browsers and they do cause problems with paying for things, particularly on sites you haven't used before or don't use often.
(If you're not sure whether you have ad-blocker software you can check it out at this site ads-blocker.com/testing/ )
Yes, A technician set me up with an ad blocker (AdBlock Plus). When I feel more energised, I'll have a go at unblocking it for the transaction. Thanks for your help
Ah, I'm glad we seem to have uncovered the problem. When you're feeling up to it it is worth having a fiddle to let it know what sites you don't want it to work on - for example mine is set to not activate on Sainsburys website. If you ever have any problems paying for things online, it is often the ad-blocker just doing its job. Hope you feel better soon, Fran.
Thought you might like to know that I have experienced the improvements that have been made by your efforts.
My father was told he had PMR at least 20 years ago. When I moved in to look after him and Mum I was aware that his doctor had very little idea of what he was doing. He had a favourite phrase that I will always remember, "I think I have something else up my sleeve that might help..." He was groping in the dark and trying to keep Dad happy. This even included putting him on morphine.
When my brother was diagnosed with PMR about 8 years ago his treatment by the same practice was much better and last year when he developed GCA after 2 years in remission he was rushed to hospital as an emergency with the treatment team waiting for him when he arrived.
When I developed PMR myself I made sure to educate myself in the treatment I should be receiving after what I had seen with Dad, and found this forum. From what I have learnt here I was able to advise my brother, even though he was reluctant to listen. I have also managed to find a member of my doctors practice who was willing to listen and learn.
Although we have never met I think you will find that most of my family have benefitted a lot from what you and your charity have done and I welcome this chance on behalf of all of us to thank you for all you have done and to give you some evidence of what you have achieved.
Wow...I just read that and printed it out. The amount of caring, work and diligence that was put into this just warms my heart...and impresses the daylights out of me. Amazing!! Look how many lives have been touched...I'm so thankful I happened upon this~!💖💖
Thank you for this jinasc. The charity, from its first inception, through the years to its current trustees, volunteers and countless helpers, has achieved a lot...and yet there is more to do. We rely on memberships and donations to help us and as jinasc so rightly says, we do it on a shoestring.
Every donation helps us to help someone with PMR or GCA. Whether that's here on the forum, on our helpline, through our information packs, campaigning for greater awareness, working with some of the leading experts in the fields of both conditions and so on.
If you can, please donate or join us. If you're outside of the UK, please message me and I can advise on the best way to pay (with the least fees). I may take a day or two to reply as I work Mondays, Tuesday morning and Thursdays. I sneaked onto the page today when I saw jinascs post
Here's the link to our membership page: pmrgca.co.uk/content/about-... or if you wish to donate, you can do it from that page too.
There is something weird with. The virgin site. I had forgotten I tried a couple of weeks ago but it sent me in circles. I just thought it may be a glitch and had forgotten until the above reference.
I just tried it and made a donation using paypal. It worked fine although you do have to go through several pages to get to the end. It might have been a glitch or it might be something to do with paying by card which I'll need to look into. Have you tried again recently?
Good heavens, isn't that the truth. I paid off my Visa...and have promised myself to only get cat food and litter delivered!😻😸Happy cat...happy life, I'm so glad Gus lets me live here, What a guy!!
Thank you for this. We have all benefited so much from this organisation it is imperative that we become members so that we can put a little back even if we don’t go on to specific donations.
It would really help if you could find a way to accept money from Forum members who don't live in the UK. Heaven knows I have tried and Fran has been so helpful, but it costs too much, apparently, to deposit even a sterling bank draft/ money order. etc.
That is wonderful !!! Just in case some of the other folks from the US don't realize, you can become a member with your US issue credit card...very, very simple to do. I had made contact with an individual who sent me to Fran Benson at fran@pmrgca.org.uk, and the rest was easy.
This forum gives to me every single day. I'd never heard of GCA and felt totally alone. You can become a member which helps support this incredible work they do, and you can even set up a regular monthly donation through your credit card. I get way more out of the forum than I do from my doctors~!! They both serve a purpose, but I cannot imagine how life would have if had I not had the support and input of this group.
It doesn't have to be a big donation....it all helps. xo 💗💗
I became ill with GCA in summer 2011 and I was helped so much by the NE group and ‘You’re not Alone’. You do feel so alone at the beginning when family and friends, with the best intentions, actually have no idea what the disease is, effects of Pred, emotional turmoil and the rest. The NE group forum was my absolute lifeline at that time and the members became my friends, several of whom I met over the years. It was jinsac who talked about ‘light at the end of the tunnel’, and of course there is. By 2014 I joined Club Zero and have now been well for nearly 6 years. So a big thank you to all my friends from these days, and I hope you are also now in better health. xxx
Thank you very much for this insight, very informative and makes me appreciate even more the commitment of you and others to helping and supporting us. It will be very helpful when telling others about the condition and the dedication of those who seek to lessen its impact in so many ways.
Believe it or not, I am just a paid-up member of the awkward squad. Which does include a whole lot of people on here. But thank you for those kind thoughts.
Not only amazing....humble~! xo I know it takes many grains of sand to create a beach...I'm just so thankful. I cannot imagine this journey without this forum.💖💖
I live in the United States and just joined. There didn’t seem to be a problem processing payment ( credit card) as grammy80 stated above. I did it right through the website without any extra having to contact anyone, in case anyone is wondering. This forum is such a blessing and all the volunteers...... just wow.
Hi jinasc - thank you for this which I have just read as I am a newbie. I am signing up and donating now. Words can’t really express the contribution that people like you make so I will make a monthly donation as requested. Many thanks
Hi Ringo...I just wanted to say welcome and from now on you will never be alone in this journey. I'm from the states and found the forum after my diagnosis of GCA in 2019. I would be lost without these wonderful people, their knowledge and their compassionate understanding. I'm forever grateful to be an active part of this group too. So glad you are here!!!💖
Conjure away!!! I am an 80-year-old Grammy whose grandchildren live in Canada and I'm in the state of Indiana, so I'm living on memories of wild adventures and pray I will get to see them again. BUT, we had some wild and crazy times. 💖 Glad you are with us.
I’ve just linked up to this overview of PMRGCAUK history by jinasc. I was surprised to read that not everyone on the HU site for these conditions is a member of the charity. Thought I’d reply and promote membership so that all the excellent work can continue. I thank everyone for their commitment over the years. I have been one of the GCA patients for whom the fast track diagnosis system saved my sight.
Unfortunately, because of the way HU works the only people who will get a notification of your reply are me, DorsetLady, jinasc and any others who actively "followed" the post originally.
Me neither and I've been here over 10 years! You aren't the only one to think it will bring it to other's notice, I have seen similar posts from past moderators!!! It's a shame we can't do it any way except adding to Pinned Posts and then you just end up with oodles in there, Nobody except DL and me look at them unless we point them out!!!
The Daily Digest generally received on my phone at about 7 in the morning had today the most recent 8 posts followed by 'Read more in your news feed' so I guess luck of the draw if a reply makes it to the top few - HU permitting people get anything on their phones, of course.
I regret to say this is the only way I access HU. Well, that and My Hub. I stopped email notifications for anything except posts by people I follow or replies to my posts because I couldn't stand the flood of notifications filling my email. Did same for Patient back when that was a thing, but there it was actually possible to see new posts in the community. It was a better style of forum before they messed it up. HU is clunky for people like me who don't have the patience to look at everything and I admire those like you who do! I know I miss most of what is posted these days.
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Just found this site after 10 years of having PMR / GCA
Research data that may be of interest - Comorbidity data PMR and GCA 
