By Jeanne Hambleton 2008
Every year on May 12 people suffering with fibromyalgia raise awareness about this invisible disability with the public who frequently ask, “Fibro what?’
For the first time ever the fibromites will be able to sing-along to a new singles CD called Fibro what? to provide the answer, while encouraging folk to by the CD to fund research to find a cure. This is thanks to a benevolent Manchester postman who wanted to help two million fibromites find a cure for their 24/7 illness.
Not only will the public hear the upbeat lyrics comedy singer song writer Dom Collins has set to music, describing the condition – aches and pains, sleep disorder, memory loss – but they can enjoy to three cheeky tongue in songs donated by the FM benefactor. Laughter is the best medicine they say but it is not necessary to have fibromyalgia to laugh with Dom Collins while supporting fibromyalgia research. Without government funding it is hoped the money from sales will help research and maybe lead to a cure.
Dom, who is well known on the Manchester and northern circuits for his good clean humour and funny songs about every day life, wrote the Fibro What song to help his friend, fibromite Christine Thomson.
“I wanted to do something to raise awareness for May 12 and when Dom offered to help I was delighted. I am fed up with the lack of government funding and doctors still telling us it is all in our heads. I am anxious everyone should know more about our invisible disability. I also felt it was important to highlight the need for research to find a cure. So the proceeds from sales will go towards Jeanne Hambleton’s new book PAIN 24/7 The Fibromyalgia Jigsaw©, due to be self published in the autumn, as the sales money from the book will go to research. The more books we sell the more money for research,” said Chris.
Holding a new contract with a well-known agent Dom expects to be busy playing, singing and making people laugh for the foreseeable future. His reviews compare him to Mike Harding and Richard Digance and claim Dom will go far. With a cheeky grin Dom said he loves to entertain and is available for any special occasion from divorces, funerals, vasectomies, wedding, birthdays and corporate affairs.
Delighted with the new CD, which uses her photographs, Chris has offered Fibro what? to fibromyalgia support groups up and down the UK to sell and play on May 12 at the special events to raise awareness.
This is the second time this year that Dom, who is a postman, has been benevolent. In January he wrote ‘Jack’s Song’s, a tribute to Jack Judge, the writer of the WWI favourite ‘It’s a long way to Tipperary’. Dom donated half the proceeds of this CD to the Army Benevolent Fund (North West) and he launched the CD at the Tipperary Café in Stalybridge, Manchester, the site of the old Grand Theatre where the song was written in1912..
This first charity CD attracted letters of support from four members of the Royal family, HM the Queen who sent a lovely letter of thanks; HRH Prince Charles, the Princess Royal, HRH Princess Anne and HRH Prince Edward who all welcomed his support for the Army Benevolent Fund. He also received nice letters of congratulations from our PM Gordon Brown and Leader of the Opposition David Cameron. These can be viewed on Dom’s Blog on his website (www.domcollins.co.uk). Needless to say copies of Fibro What will be winging their way to Buckingham Palace.
But Fibro What? CD is just part of the story? There is a new fibromyalgia book on the way later this year. Written as a labour of love and self-published to preserve as much money as possible, sales money will contribute to research to find a cure for fibromyalgia – the pain fibromites live with for the rest of their lives.
With the present government making no effort to put aside a substantial sum of money for research, fibromites must do it themselves. Every Fibro What Cd is raising money towards research. For more information about the music or fibromyalgia email firstname.lastname@example.org or log on to http://fibrowhat1.wordpress.com. There are also Fibro What tee shirts and tote bags available.
OTHER MAY 12 EVENTS
May 12 is not just the International Fibromyalgia Awareness Day, but it is shared with the CFS/ME organisations, and is also listed as the International Nurses Day.
May 12 is the International Fibromyalgia Awareness Day, the birthday of Florence Nightingale, who was believed to have suffered with fibromyalgia and chronic fatigue when she returned from the Crimean War.
Born to wealthy parents in 1820 in Florence, Italy, she was described as a wild child. She took 36 nurses to British military hospital in Constantinople in 1854 when the Crimean War broke out. This was the first time female nurses had served in military hospitals under war conditions. She became known as The Lady of the Lamp.
The work of Florence Nightingale, the English army nurse, led to the creation of the International Red Cross. In her 30s Florence Nightingale suffered a paralyzing FM/CFS/ME-like illness and spent in the last 50 years of her life virtually bedridden. In hindsight some say she suffered with fibromyalgia. In spite of her illness, she founded the first School of Nursing. It is fitting that the determination of this lady of the late 19th century became an inspiration to victims of CIND – FMS/CFS/ME/PVFS/MCS (fibromyalgia, chronic fatigue, myalgic encephalopathy, post viral fatigue syndrome, multiple chemical sensitivity) and other long-term chronic pain illnesses in the late 20th century.
In East Wellow, in Hampshire, UK, at St Margaret’s Church, where Florence Nightingale was buried in 1910, a service is held on the Sunday after May 12. There is a significant memorial in the graveyard.
The website Answers.com tells us that every year in London in Westminster Abbey on May 12 there is a service during which a symbolic lamp is carried from the Nurses’ Chapel into the Abbey. This is passed from one nurse to another before the Dean of Westminster Abbey places it on the High Altar. It is said this is symbolic of passing the knowledge of nursing from one to another.
Wikipeda, the free Internet encyclopedia, provides a long list of important events which happened on May 12 including the Coronation of King George VI in 1937, the Queen’s father; in 1942 on this fateful day 1,500 Jews were sent to the gas chambers in Auschwitz; and on a brighter note on May 12 1965 the Soviet spacecraft Luna 5 crashed on the Moon.
INSPIRATION FOR MAY 12
The Awareness Day commemoration was the inspiration of Tom Hennessy, a American patient with chronic immunological and neurological diseases. His thoughts to link with
Florence Nightingale’s birth date galvanised the CIND community to pressurise governments to respond to these devastating illnesses. These days Tom is constantly bedridden and too ill to even answer emails, which still arrive from all over the world.
According to the CIND website symptoms of the chronic immunological and neurological diseases included cognitive problems, chronic muscle and joint pain, extremely poor stamina, and numerous other symptoms. The number of those suffering with these problems increased dramatically. In the 1980s, and patients were often dismissed by the medical profession as suffering from psychosomatic illness. It still happens today with some GPs.
As the illnesses became more widespread many people were so weak that they could not care for themselves. The mystery aches, pains and fatigue continued to spread unchecked with little response from government of the day. In order to raise awareness of the seriousness of the situation, the response was the MAY 12 International Awareness Day.
BETTER LATE THAN NEVER
Two days after the world celebrations the Fibro What composer, Dom Collins, is visiting the South Manchester Fibromyalgia Support Group in Sale on the evening on Thursday, May 15, with fibromite Christine Thomson, when he will be playing his guitar and singing Fibro What? to those with fibromyalgia.
This is a small group run by Leader Georgina Jameson with just 15 members including 4 men with fibromyalgia. The group covers Greater Manchester and Cheshire. It is unusual to have such a high percentage of men with FM in a group – almost a third. Members enjoy socializing, speakers, a library and a helpline. For more information about the south Manchester meetings contact the Leader. (email@example.com)