by Jeanne Hambleton © NFA Leader Against Pain International Advocate
For my sins I am the moderator of the http://www.ukfibromyalgia.com/forum and this week I received an email asking if I had received enough response from sufferers about lobbying government for funding for research into FM? The writer said, “Did it go before anybody?”
The answer is no – I fear I may be surrounded by apathetic fibromites who should be helping themselves but sadly they may be too ill even to do that. May I publicly thank the few from the FaMily forum who did sign?
Cat, who wrote the email, told me, “ I have been thinking, Gordon Brown may actually respond because he claims to care about the NHS?”
With the latest news about changes in the NHS, Cat may be right – but somehow I see it as political propaganda. Bet he does not even know what a fibromite is? I can imagine Gordon Brown saying, “Fibro what?” as he drops his bottom lip…poor lamb.
Cat then said, “I know very little about computers, but I would like to get something simple up and running on the site to send directly to Prime Minister. What is most prominent to me at the moment is lack of GP awareness. How amazingly hard it is to get Disability Living Allowance. This condition is clearly misunderstood.
“Sadder still is the fact that we are too helplessly tired to help ourselves. May be a simple petition on the forum would get members and their carers sitting up and helping themselves. I know we let off steam at times but if some of that energy was used to change the lack of awareness it may do some good.”
Sadly the e-petition Cat talked about, appealing to Gordon Brown for funding for research, was started in July 2007 and due to end on January 23 2008. This STILL only has 550 signatures and will almost certainly finally reside in some civil servant’s WPB (waste paper basket) as it has less than 1,000 signatures.
If you, your friends, family, the dog, the man at the bus stop, even a passer-by, can be moved to sign it this will take less than a minute, it would be good. We need 1,000 signatures for it to mean anything – another 500 in the next two weeks! Thanks.
As part of my promise to share the good deeds of those fibromites who are raising awareness you will find the story below interesting and indeed encouraging? What are you doing for May 12, International FM Awareness Day. Maybe you could persuade the Mayor of London (before the mayoral elections) to declare May 12 as London’s own Fibromyalgia Awareness Day and others might follow!
On a bright note, talking about raising awareness, in May 2007 I had an email from Bianca
Embley who wrote, “I am a 31 year old fibromyalgia sufferer. My fibromyalgia was caused by an accident at work, as a flight attendant with an airline. I had a legal action against them, which had a successful outcome. I did some publicity following the case to raise awareness. I run the Warwickshire support line and I am now looking to a new project. I am hoping to gain much awareness and publication from this project.”
Keen to encourage Bianca’s project I wrote offering help and the benefit of my experience in the newspaper world. I heard nothing more until this week when I had news that Bianca Embley, the PolkaDotGals campaign founder, with Emma Levick, and Lindsey Middlemess both UK Support group leaders, attended the All Party Parliamentary Group on FM meeting in November and held a photo shoot with girls lined up in front of the Houses of Parliament wearing tee shirts with letters on them spelling out fibromyalgia.
Bianca also managed to achieve newspaper coverage in The Warwick Courier – see this link.
The headline of the story by Robert Collins read, “Model Bianca spells out a message to MPs about disease.” He described Bianca’s demonstration outside Parliament an eye-catching. She arranged for Leamington sprint hurdler Sara McGreavy, page three girl Danni Wells and nine other models to wear yellow polka dot miniskirts and T-shirts printed with letters making up the name.
Bianca set up the PolkaDotGals campaign to raise awareness of fibromyalgia, and has produced a 2008 naked calendar featuring the page three girl, hurdler and members of the Coventry City football team. She also had a press shoot which generated a lot of local and regional media attention. Bianca is now planning the 2009 fibromyalgia calendar.
One of the highlights of her latest awareness campaign would have been an interview for the Daily Express published January 1st.
So it seems Bianca may have bared all for the cause!
THE AWARENESS BUG
Lindsey Middlemiss Group Leader of the West Berks ME & FM Group who also helped with the PolkaDotGals Campaign, said, on a more serious note, that the neighbouring FM and ME groups are working together to campaign our Primary Care Trust to get services for people with FM or ME in our area.
She wrote, “In November the group had it’s first local Awareness Day, which was organised with the help of the West Berks Neurological Alliance (of which the group is an honorary member) we had talks on the group, the Neurological Alliance, the campaign for services and what ME and FM really are. There were information stands and refreshments and it was very well attended, generated a lot of local press with local dignitaries and Richard Benyon MP honouring us with their attendance.”
Writing about the background on the local campaign for services Lindsey said, “We will shortly be meeting with a commissioner from the Berkshire West PCT and two of the things we are asking for a specialised ME & FM Living Well course as part of the Expert patient Programme, and the PCTs support for a GP Care Pathway Guideline for people ME and or FM that does not rely on having experts to hand (we have none locally).”
The West Berks ME & FM Group has around 50 members and is based in Newbury, West Berkshire, although they have members living as far afield as Marlborough. They have a coffee morning on the first Monday of each month, from 10.30am to around 12pm, at Costa Coffee, Northbrook Street, Newbury. They also have evening talks on the second Monday of the month, at 7pm for 7.30pm, in Meeting Room 1 at the West Berks Community Hospital. And we have a drop-in session on the second Friday of every month from 2-4pm, at Hillcroft House on the site of West Berks Community Hospital. Other social and awareness events are organised throughout the year. For more information about the group from see the website – www.wbme.org
Lindsey said, “I am also organising a fundraising ball and auction for fibromyalgia to tie-in with this year’s International Awareness Day and the press campaign for this will be starting this coming week.”
On her web site Lindsey says, “On Saturday May 10 2008, the Royal Thames Yacht Club, Knightsbridge, will be the venue for the Yellow & Black Ball & Charity Auction in aid of Fibromyalgia Awareness in the UK.
“The Yellow & Black Ball is a fabulous opportunity for over 150 guests to enjoy a glamorous evening in a beautifully appointed venue at one of London’s best addresses, as well as make a real difference to Fibromyalgia Awareness in the UK. Dinner overlooking Hyde Park will be followed by a charity auction of items such as celebrity memorabilia and once-in-a-lifetime experiences and all money raised by the event will go to help Fibromyalgia Awareness in the UK, hopefully paying for one or more specific projects.
“The date was chosen to tie-in with International Fibromyalgia Awareness Day on May 12, with the ball name, and alternative dress code, of Yellow & Black coming from the awareness ribbon for Fibromyalgia in the UK of yellow with black polkadots.”
Tickets go on sale next month, but you can register interest in the event without committing yourself by emailing Lindsey at email@example.com. Lindsey is also looking for help from the fibromyalgia community, sponsors, donors.
So break open your piggy banks and get out your dancing shoes and posh frock and have a great time. If you are wearing that little black dress, add a yellow flower or sash to symbolize your support.
Emma Levick, the other key member of the PolkaDotGals team is joint group leader of the South Cheshire FM Support group.
ANOTHER WOMAN’S AWARENESS PLEDGE
Back to Cat’s second email, after she had read about those folk who are trying to raise awareness, she wrote, “ Boy that has got me thinking! I have been having a read and found it very interesting. There is plenty of fight left in me, more these days than ever before.
“If I am writing, I forget the pain awhile. Most of my life has been spent caring for the disabled. It is time to care for myself now. But at the forefront of my mind is raising awareness, so thanks for pointing me in the right direction.
“I will try to put myself forward to talk to medical students. (see story about Fibromite Ahead of Her Time by talking to medical students). I will keep you posted…..I have been a fibromite since 1991, maybe longer. Cat.”
Good luck Cat – whatever you do to raise awareness – however large or small – it all helps and is appreciated by those fibromites unable to help themselves. Go for it!
I wonder what people in the rest of the world are planning for May 12 International Fibromyalgia Awareness Day? Maybe someone will tell me – firstname.lastname@example.org.