Daily Mail story | Arthritis Information

 

Interesting story in the newspaper, 'Daily Mail' from the UK by TV reporter, Dorothy Byrne.  She not only had PMR, but developed GCA very quickly. She's just in her 50s.

TV boss who couldn't get out of bed:

http://www.dailymail.co.uk/health/article-1246075/TV-boss-bed-thought-overdone-In-fact-crippling-disease-blind-you.html
RickF2010-07-14 06:29:22Great article! Thanks, RickF.

freesia
RickF

In case you also read the article in the Daily Mail on 13 July, I though you might like to see the letter we wrote to the Editor of the Daily Mail.  I do not think it will be published, but thought you might like to see what was factual and what was inaccurate in that article.

Hello All

At the time of the Daily Mail article published on 13 July 2010, I was so spitting mad at the inaccuracies that I kept my mouth shut.

However I made some enquiries and the more I thought about the more I came to the conclusion that I would write in to the letters section.

I have no hope that it will be published, but thought you might like to see, what I and my colleagues who assisted me wrote.



Daily Mail 27 July 2010

Dear Sir

Polymyalgia Rheumatica and Giant Cell Arteritis

On 13th July you published an article on PMR in the Health section.

I read this article with some concern and distress as clearly the article contained inaccuracies.

One fact is that currently, there is no known cure or cause for PMR and GCA, which is why a new charity was launched in March this year. And in Scotland was launched over three years ago.

I contacted Professor Bhaskar Dasgupta, the Honorary President and Lead Medical Advisor of PMR GCA UK to confirm that he could not have possibly said what he was quoted as saying in that article.

The Professor advised that what he had said had either been misrepresented or misunderstood and the journalist in question had not contacted him before the article was published to see if it was accurate.

PMR and GCA are little known illnesses and whilst not life threatening, destroy hundreds of patients quality of life, just as they are hitting their 50's onwards and the medication which relieves the symptoms, but which does not cure, is not friendly and can cause frequent, distressing and serious side effects.

The comment that 'PMR can lead to blindness' is totally inaccurate and raised much concern with members in our Support Groups who contacted us after reading the article.

What the Professor had said, was that GCA, if not quickly diagnosed and if not treated timeously, could lead to partial or total loss of sight, which is irreversible.

Viral Infections (the list is long) have certainly been reported in various research papers, but as yet there is no conclusive proof.

The Professor and Patients are well aware that there is no 'quick cure' the hope is that 60 to 70% of patients will be able to come off treatment after two years. That is that PMR burns itself out. But as most of us know, PMR has a mind of its own, comes and goes and does just what it likes and many of us are still on medication years later. And PMR may be a chronic disease in many situations.

We desperately need Research into Cause, Cure, better diagnostic tests and much friendlier medication.

We need to heighten the awareness of these two illnesses as they are on the rise exponentially.

Diagnosis is difficult at present and as mentioned before we need better tests. In the meantime people are suffering unnecessarily, the benefits bill is going up and more carers are needed.

Inaccurate reporting of any medical condition is not helpful. I would ask that you print this letter in full and also institute the practice that if writing an article on any illness, that article is checked with the person who supplied the information for accuracy.

I would rather there was no publicity than inaccurate information.

Yours sincerely
Hi Mrs. UK,

Excellent letter.  Thanks for sharing.  As you mention, it's doubtful that they will respond, but it's still good to let them know when they make some mistakes.

P.S.  I'm curious, are you the same person as Mrs. K on the other forum? Thanks.
RickF

Olde English Proverb "Curiosity killed the cat  - satisfaction brought it back".

The answer is Yes.

I use UK when I am not posting in the UK.



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