EUROPEAN PARLIAMENT DISCUSSES FIBROMYALGIA AS FOLLY POGS PLAN BALL

As the European Parliament in Brussels discuss a written declaration on Monday (September 1st) asking the European Committee to raise more awareness about the consequences of fibromyalgia, UK patients all over the country are writing to their MEPs seeking support.

 

Confirming that they have fibromyalgia and they are supporting the Fibromyalgia Association UK, up to two million people suffering with fibromyalgia, mainly women, should be urging their MEPs to support this written declaration by signing the document at the next plenary session or by going to the EP written declaration office.

 

The declaration has been put forward by Ms Jolanta Dickute, Ms Kathy Sinnott, Ms Frieda Brepoels, Mr. Nicolae Vlad Popa and Mr. Adamos Adamou, all members of the European Parliament, in support of the European Network of Fibromyalgia Association (ENFA), currently representing 11 countries. These are Belgium, Denmark, France, Germany, Israel, Italy, Netherlands, Portugal, Spain, Sweden and the United Kingdom.

 

If you want to know who your national European Parliament members are log on to  (http://www.europarl.europa.eu/) choose your language, click on Your MEPs, and then on your country.

 

GLOBAL FIBROMYALGIA SURVEY

On their new website (www.enfa-europe.eu) the ENPA partnered by Pfizer, have published the results of a recent global fibromyalgia survey that revealed a huge percentage of doctors and  specialists dealing with this conditions, have had no training relating to fibromyalgia. It is revealed that the majority of physicians in the eight countries surveyed, reported receiving an insufficient level of fibromyalgia training, except in Mexico and Spain,

 

In the eight countries involved – France, Germany, Italy, Mexico, the Netherlands, South Korea, Spain, and the UK 800 patients and 1,622 physicians were surveyed.

 

The findings confirmed that fibromyalgia might have a negative effect on the patient and cause disruption to their life.  There can also be significant financial implications for those suffering, if they are unable to work and earn an income. The survey revealed being diagnosed can take up to three and a half years but in Korea the average is a little over seven months. Specialists admitted diagnosing fibromyalgia is very difficult and the condition is often misdiagnosed.

 

In Mexico and all of the European countries patients reported that fibromyalgia has a big impact on their life. This affects the overall quality of life, mobility, moods, memory and concentration, and drive and motivation to do things. On average patients can experience between six and eleven different symptoms.

 

An executive summary revealed that 96% of physicians and 87% of specialists in the UK were not confident in discriminating symptom of fibromyalgia from other conditions. These figures showed a higher percentage than physicians and specialists questioned in the other countries

 

In the UK on average it took over 2 years to be diagnosed with fibromyalgia and a patient was likely to see four physicians. Also 63% of specialists and 82% of physicians had little or no training in fibromyalgia. Most patients wait up to five months before seeking advice in the hope the symptoms will go away. Approximately one in five patients were unable to work.

Up to 68% of patients claimed that fibromyalgia had a very strong or strong impact on their quality of life. Half reported fibromyalgia strongly effected their concentration, memory, mobility, moods, motivation, drive, and their ability to do their hobbies.

The most common symptoms among UK patients were headaches, low back pain, chronic widespread pain, and stiffness.

 

The survey revealed the biggest problem for UK physicians and specialists was identifying the symptoms. Up to 93% of the physicians reported they were not comfortable diagnosing fibromyalgia and needed to focus more on this condition.

 It was agreed that physicians should spend more time with patients to achieve a diagnosis. It was also reported that physicians reported patients found it difficult to communicate the symptoms.

 

FIBROMYALGIA AWARENESS WEEK

While 11 countries are busy in Brussels raising fibromyalgia awareness, Saturday (September 6) is the start of the UK Fibromyalgia Awareness Week. Patients and members of over 100 support groups throughout the UK will be manning information tables in shopping malls and superstores, hosting coffee mornings and other events to spread the word – fibromyalgia.

 

In Chichester a group of fibromites are organising a Folly Pogs Ball at the end of the Awareness Week on Friday (September 12) to raise funds for research. There is no cure for fibromyalgia and no government funding for research.

 

Chairman of the Folly Pogs aka East Hampshire Borders Fibromyalgia Philanthropists Support Group, Jeanne Hambleton, said, “With no help from the government to find a cure, the Folly Pogs, a dedicated group of volunteers with pain 24/7, chronic fatigue, suffering sleepless nights and poor concentration, have taken it upon themselves to ‘move a few mountains’.

 

“The Ball, which has been hit by the credit crunch, has taken months to prepare and we need a full house to make it a really memorable night. The ball has a comedy cabaret, laughter, fun, nonsense, not to mention mirth and merriment. We are even giving prizes for the daftest dickie bow, the funniest fancy dress and the best joke told by a visitor. We even have ‘embroidered unmentionables’ in our charity auction.

 

“Frankly my members will do almost anything to find a cure. They want to play with their children, go cycling and dancing, do their own housework instead of relying on others. We are not lazy – we just do not have the strength to do these things.

 

“The public can help us find a cure by supporting the Ball. All these super mums, perfectionists, and workaholics, suffering with this miserable invisible disability, do desperately need a cure.”

 

From this week Chichester Festival Theatre are previewing the new Calendar Girls play and seven stars - Lynda Bellingham, Patricia Hodge, Gaynor Faye, Sian Phillips Elaine C Smith, Brigit Forsyth and Julia Hills - are to be invited to a late supper after their show as guests of the Chichester Park Hotel to meet the fibromyalgia Calendar Girl. This is the second year Bianca Embley has produced ‘girlie’ calendars using some fibromyalgic models to raise awareness. Bianca will be at the ball to meet the stars from the Calendar Girls.

 

For more information about the Folly Pogs Ball email follypogs@me.com or telephone 0845 345 5942. 

Exciting news for Fibromyalgia Research!

MAKING MUSIC THE FIBROMYALGIA WAY

By Jeanne Hambleton © 2008

They say fibromyalgia runs in families, but my latest news shows that in one family both music and fibromyalgia research are excited about ‘Hard Times’.
Spanning three generations, a granddad (a very young one), two of his grandchildren and a nephew, are all involved in writing, playing and selling their music for their first CD ‘Hard Times’ to raise funds for research. They hope to find a cure for fibromyalgia for granddad and millions of other fibromyalgia sufferers through research at the University of Michigan, in Ann Arbor. Michigan.
Richard Lee (aka Rick Usher of FMS Global News), Justin (16), Autumn (10) and nephew Tim (29) have been busy in the studio laying down some tracks for their first CD that is dedicated to fibromyalgia and Gulf War Syndrome veterans.
Richard told me, “I am a musician with fibromyalgia and fibromyalgia research is one of the most important things I can think of to use the gift of music for. Where it will go from here I have no idea, but I am ready for whatever develops. These songs are free to download ahead of the CD release that will be in the very near future.
Richard said he had written most of the songs with the exception of Summer Time (a George Gershwin Tribute) and Tobacco Road (a tribute to John Laudermilk the author of the song, and “Simple Man” which is Tim’s contribution as well as a song he wrote called “Believe”.) – both great favourites of his.
“However these are my renditions of these songs and they are different from the originals by a significant degree. The rest are songs I have written and these will be available for fibromyalgia research funding soon on CD or by download,” said Richard.
The band is set up with Rick (Richard Lee) Usher, Lead and Bass Guitar, Vocals, Harmonica, Keyboards: Justin Usher, Keyboards, Guitar: Tim Upton, Guitar, Vocals. The newest member of the group is Rick’s granddaughter, Autumn (10) who is playing piano/keyboards.
Rick said, “After only one lesson she can pick out the melody of all my songs. I am 52, so we have a broad age range (107 years) and we are all related.
“The youngsters are thrilled to be helping me with my fibromyalgia and the research. It gives me a big kick to watch their enthusiasm and their support. They are great kids and I love them to bits for helping me. Their grandmother and their mother, who has FMS, are pretty proud of them too.”

For more information log on to
http://www.myspace.com/richardleeandhardtimes

FM FRESEARCH ACROSS THE POND
Conscious that fibromyalgia is reported to be reaching world wide epidemic proportions, Richard, hopes to introduce the first UK Fibro What CD for downloading when his own Cd is launched. Written and played by Dom Collins, an award winning comedy singer. Dom donated the music with three very funny backing tracks, to help fund UK research. Now the Fibro What CD is being sold ‘across the pond’ to support research funding in the UK. Log on to http://www.domcollins.co.uk/MYSPACE for more details.

PERSONAL HARD TIMES
I asked Richard to tell me something about his fibromyalgia and his driving force.
He said, “My fibro first began to be a major problem when I was about 24, so I have had fibromyalgia most of my life. I was an electronics engineer and finally in my 30′s had to give up my career. I had just bought a home to raise my family and had a new mortgage and I suddenly could not work anymore.
“Somehow with my wife’s support we managed to survive. Staying together and being close as a family is very important when you have fibromyalgia. My oldest daughter also has fibromyalgia, and her son Justin is part of the band.

OUR MUSIC
“The music we play is a bit of everything. Some is blues and jazz and folk and some good old rock n’ roll. I write songs about real life – what I have lived and learned.
“One song that is about my experience with fibro is called “Learning to dance in the rain”. I encourage anyone that has fibro and a MY SPACE website, to add this song to their profile. I’ll have a better version of the song up soon.

RESEARCH SUFFERS IN HARD TIMES
“I truly believe that research into fibromyalgia is at a stage where new discoveries are within our grasp. Sadly with the economic troubles we are all facing today, research funding is not keeping pace with the science we badly need to develop.
“I have met Dr. Daniel Clauw at the University of Michigan and want to support his fibromyalgia research. You may recall that Dr. Clauw was the one that proved fibromyalgia is not “all in our head” and his contributions to fibromyalgia research are well known worldwide.
“We originally planned a benefit concert at Hill Auditorium for Sept 21 of this year but with the economy the way it is corporate sponsors are a bit more difficult to find so the date will most likely be moved back unless we get a miracle. In my world miracles happen often.
“We will soon be producing a CD which will further help raise funds for research and will have a dozen or so songs on iTunes soon that will also benefit research.”
Since another artist already used my last name I go by my first and middle name with the band. Hard Times is the name of the band because everybody knows hard times.”

Congratulations on your achievements Rick, given you have fibromyalgia and a passion to find a cure. Well done to you and your young team. I hope lots of people like your music and help you build up a good fund for research. .
The group hope’s to add other venues and will consider fund raising for cancer research funding in the future’