Letters to the Editor:

I am the chairperson of the Nottingham & East Midlands Fibromyalgia Support group with 270 members, one of whom has visited New Zealand this year and brought back a copy of one of your newsletters. As editor of our newsletter, I found yours very interesting reading and full of good information.

Our group does an awful lot of awareness raising and the Helpline team regularly takes 15 calls per week from new contacts. How are doctors and consultants etc with Fibromyalgia in New Zealand? Here it is a lottery, depending on your general practitioner and the consultant that he/she may send sufferers to see for advice.

Only last night I took a call from the wife of a chap who has had fibro for about 6 months. After having blood tests to rule out other things, the doctor wrote the word ‘Fibromyalgia’ on a slip of paper, handed it to his patient and told him to look it up in the dictionary!

Fortunately, his wife visited another hospital, saw our poster on the wall and was able to get in touch. This still happens all the time. It makes my blood boil and in the 19 years I have had fibro, nothing seems to have moved on here at all.

So our group has been acting on behalf of the U.K. Association by lobbying members of groups up and down the country to lobby their local Member of Parliament. Well, it worked. AND in January an All Party Parliamentary group for Fibromyalgia will be launched at Westminster in London.

We are also creating a doctor forum to act in an advisory capacity. Our local MP is co-ordinating this on our behalf and the aims of the group are to get bids for research and also raise more awareness of Fibromyalgia. They are also able to ask questions in Parliament on our behalf so things are going to move on, although Rome was not built in a day, and wheels grind slowly.

Can we be put on your mailing list for your newsletter?

Take care and best wishes,

Anne from Nottingham, England.