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 firstname.lastname@example.org or telephone 0845 345 5942.