ANGELONE2

[angelone2]

I sent a message via the internet asking if Dr. Chris of ITV fame could through his spot on This Morning highlight Polymyalgia and its many health affects as some people have never heard of it and assume it is something like Fybromalgia which i painful enough but dose not hav the serious consequences as PMR. I did not receive a reply but if enough of us applied to ITV maybe someone would help.This needs to be made public before the powers that be consider it serious enough for investigation.

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I throughly agree, but how strange that only this morning I was thinking the same thing! I don't know if ITV This Morning programme would screen this debilitating illness, but I suppose if you don't ask you wouldn't know.

Recently Iv'e noticed that Dementia is being promoted by the media, quite regularly in fact, on television and in our national papers. I think it's excellent, but agree with you that PMR & GCA should be brought to the attention of Joe public.....Iv'e had PMR for 7 years and when asked about my illness by friends or people I have met have been very surprised to hear that not one person had ever heard of this illness, or for that matter how debilitating it is to people who suffer with this disease. I would be very pleased to support your suggestion of bringing PMR/GCA to the attention of the MEDIA.... GOOD LUCK......

Do keep me posted YOU CAN DEPEND ON MY SUPPORT!

Regards......

[DorsetLady PMRGCAuk volunteer]

I wish you luck, but I think there would need to be a lot of support from other members (which I'm sure there would be). As a lone voice I doubt if you'll get a hearing, unless somebody famous is a sufferer. I tried to get the Times doctor to do an article on GCA a couple of years ago, quoting this forum and dropping Kate Gilbert's name as a contact, and although I had an email back from him, I am still waiting to see anything in the paper. But good luck anyway.

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I agree too. I was having physio for frozen shoulder and the physio said "I know what is wrong with you" and I asked him to write it down. He wrote to my doctor and once GP got the letter I was taken seriously. I still had the frozen shoulder op though and, to put it simply I think Surgery specialists will always cut and medics will - medicate. There is no such thing as holistic treatment. I myself was thinking of asking Dr Miriam Stoppard to write about pmr in her column in the paper I read. Also the way these things seem to run in families.

[PMRpro Ambassador]

There have been a few articles on GCA and PMR in the Daily Mail and also a couple of times in the People's Friend.

The cause isn't particularly helped by the 2 most famous PMR patients never mentioning/having mentioned it! Both Mrs Thatcher and Princess Alexandra developed PMR. MrsT was "successfully treated and was well in 6 months" - wish the rest of us could have the same treatment is all I can say!

To a great extent though, it is the doctors who need to be educated so that it is diagnosed properly and the true figures and age range represented correctly. The 3 forums are doing their best in dissemination of information and there are patients who regularly attend medical schools to teach medical students from the patient's point of view. Last year I saw an appeal for more people to be involved in that - I would have gladly joined in but it is a bit far to commute from northern Italy...

[angelone2 in reply to PMRpro]

Thanks to all re tv coverage of PMR. As pointed out one lone voice will be ignored but if only each one of us on the forum (around 1000 I believe) would contact itv our plea might just be heard. I am sure there are other sufferers who do not know about the forum but would join in if the subject of PMR was televised.

[David_H]

Hi, good idea. To make it ever so easy for others to amke similar request though to TV programme could you post the web site address and process followed? Thanks Dave

[angelone2 in reply to David_H]

[e-mail] - e mail address .

[kate1978]

I was diagnosed with PMR 18 months ago and I'm now down to 4 and a half mg of pred, but don't seem to get any lower. I don't know anyone else who has it, so this group is helpful. I do worry about the GCA and wonder if I would recognise the symptoms, as I am a migraine sufferer. More should be in the media about it