Fran Benson has put a call out - follow the link - read it and take action.
healthunlocked.com/pmrgcauk...
When we did the basic research on 'Your Ears' without the input from patients on here, we would not have proved the fact the the 8th Cranial Nerve plays a part in GCA.
Get those fingers working and don't think - only 8 needed and leave it to someone else.
Every number counts. SO GET CRACKING.
I've completed it and it didn't take as long as they estimated !!
Thank you.
We have fought so hard over the years to get more research into PMR & GCA and slowly it is paying off, but we must keep using the limited power we have.
This morning on the Radio they were talking about the need of women to be taken more notice of in medicine.
PMR & GCA were really on the back burner. Why was this - because out of 100 people 95 were women. Medicine was and still is male orientated. It is getting better slowly.
There may well be hope if enough of us respond about PMR especially if a medic or famous person has it and speaks up. I've noticed the recent publicity about menopause and HRT which has also been going unnoticed until women in the public eye who have now reached that age have spoken up!! I wouldn't wish an autoimmune disease on anyone! but there must surely be someone out there with some clout ! Until then we must spread the word ourselves and get it fully recognized !!!
I did it when it was first mentioned - think it’s really good - hope we get enough participants 🤞
3 and counting - yippee. I will probably bang on about this again. We really have to help ourselves to get this PMR consigned to history or even just more knowledge and help.
Done jinasc! ✔️
Done it
Done as requested!!!!😍
Done!
I did it yesterday and I thought I’d posted done, but I can’t see my reply on the thread, so if it didn’t go, you can add me to your headcount 😁, and as someone else said, it didn’t take as long as estimated !
I’ve been a member of this survey for quite a while and complete their surveys as a PMR sufferer. They are currently looking for ‘healthy friends’ to take part in the survey for comparisons. The link is bit.ly/inspire_friends if you know anyone who would be interested.
I've done it too, but phew! Feeling very virtuous now.😬
Done
Done!
Thank you to those who have responded to the call. I have counted 21 so far.
It is now the 22nd July and the survey is due to end on 31 July however it may go on to middle of August.
So, apart from the 18 I have counted so far, where are the reaming 16, 471 members of this particular thread?
We should be able to flood them with answers, and what is the problem with giving up about 10 minutes of your time. It is at no cost to you, except about 10 minutes of your time.
It is for your benefit and for future people who will get PMR and until research is done, we will not get cause and cure.
Big figures, carry more clout more notice is taken - please do it today.
When I asked for basic stuff in relation to ' Your Ears', over 400 of you responded and that resulted that another symptom was added to the diagnosis of GCA.
It is called People Power.
That is the number of members who have signed up since the forum started and haven't resigned when they stopped using it so most of them won't be aware. Though there are probably a couple of thousand active members who could contribute 
I think quite a lot of us got an email direct from the study and had already filled it in before the call came via the forum so things won’t be as bad as they seem (hopefully!).
Ta, never thought of that. I am nosy so if I remember I must just ask the question - how many responses please.
Except - I might be wrong but I assume James contacted Fran to ask for a prod...
I can't respond 'cos my GCA has gone into remission.. can't respond to the sister one for healthy friends, because I have had GCA in past...I did try...honest guv!
Dont' worry I will forgive you most things because you are Freya. 😘
I have done it as I checked and as long as you say in the two boxes at the end of the survey they are happy to have it done.
okay -I'll give it a go. the friends one, or the original?
I just did the one from the link that Fran gave. There was a contact email in the first page of the survey. Me being me - thought nothing ventured, nothing gained.
Now it is quite possible that they were just being nice...................who knows
Have done it -and emailed to explain its retrospective and pre covid. Not sure how much use it will be -but that’s up to someone else to decide.
The lady who answered my query said as long as we put the facts in ie remission and GCA etc it would be used. So hopefully, thee and me will not have wasted 10 minutes. Methinks not. 👍
I live and learn. Now where are that couple of thousand 🤔 😈 ????
grrrrrrrr Still I live in hope😘
Done! A fascinating survey
Late to 'the party' (have excuses but won't bore you 😏) but done now.
No, right on time - and you made it.
Do we get annual reviews as PMR patients?
In Case of Emergency
Fundraising - We Need Your Support
Just diagnosed with PMR
To all GCA and PMR patients: 
