Fibromyalgia Awareness Means Everything
FAME Convention
16th-19th March 2006
With the backing of their fellow Trustees, chairman; founder and coordinator of the Fibromyalgia Support Group for Surrey & Sussex, Jo Fisher, and public relations and press officer Jeanne Hambleton left for America for a hectic convention in California hosted by the National Fibromyalgia Association of America.
The event described as “Fibromyalgia Then and Now – the Path to Improved Health”, had 12 financial sponsors. This support enabled the NFA, that is a non-profit organisation relying on grants and funding to help those suffering with fibromyalgia in America and elsewhere, to stage an intensive three day event with up to three different presentations at any one time.
The NFA, which was founded 10 years ago, held its first convention in May 2000. The 2006 event had taken 16 staff, help from 50 volunteers and 2 years to put together.
President of the NFA Lynne Matallana said, “As FAME 2000 drew to a close we knew that all the hard work had been worthwhile and that the spirit of FAME would continue to live on within each of us until we came together again, looking for new answers and exchanging new ideas that would help us even further”.
Since the 2000 event Lynne said time had provided a better understanding of fibromyalgia.
During the convention Jo and Jeanne were invited to listen to 55 experts at 66 presentations covering all aspects of fibromyalgia: triggers, stress, causes, pacing, flare-ups, the brain, immunology, genes, family connections and alternative therapies such as yoga to help patients control their lives.
In the following action packed days Jo and Jeanne tried hard to cover as many of the presentations as was humanly possible, passing each other on the way to this convention room or that ballroom. Some of the speakers’ presentations are reported in depth and others include a taster of what was discussed. Regrettably not all of the presentations can be included in this report.
A mealtime meeting
After three hectic days of listening and writing for endless hours at the convention, having used two A4 pads with some 73 pages of notes, their heads were spinning with fatigue and fibro fog. Jo and Jeanne relaxed and started to put their notes together. Although there had been little time to talk about what they had heard each day, they both agreed the 11 hour journey in a Boeing 747 and the opportunity to meet so many lovely people and network, made the event really worthwhile.
They found at least 4 sympathetic expert doctors who agreed to join the Group’s medical advisory panel. They also approached a lovely American actress, with fibromyalgia, who had connections with the UK, and asked her to become a Patron. There were negotiations with Swiss Medica, of O24 Fibromyalgia fame, about helping the Group. Talks are ongoing but it is hoped this will open up new horizons when they find a UK distributor.
To add to the good news, Lynne Matallana, who suffers with fibromyalgia herself, has agreed to support and help the Group to move forward, raise awareness, and lift the Group’s profile. A meeting in her office before the start of the convention touched on World Fibromyalgia Day 2007 when it is hoped our Support Group will play a major part in worldwide activities.
With some ten years experience behind her Lynne Matallana was anxious to encourage Jo and Jeanne to take the next step forward to really raise the awareness surrounding fibromyalgia. Flush with their success Jo and Jeanne agreed they made a good team and are looking for chances to make more conquests.
It took almost two days to sort out the paperwork and the purchase of new suitcases for Jo and Jeanne to bring back the mass of files, paper, magazines, and catalogues; not to mention an excess baggage charge faced by Jeanne who tucked away all sorts of literature. Now back home safe and sound Jo and Jeanne have been working to put this report together to help raise much needed funds for the Support Group. We hope you will find it interesting, educational and not boring to read.
THE NATIONAL FIBROMYALGIA ASSOCIATION (NFA) OF AMERICA
Founded in 1997 by Lynne Matallana and her friend, Karen Lee Richards, the Association is a nationally recognised leader in supporting fibromyalgia research, education, advocacy and awareness. Hosting the convention was said to be just one way of helping patients raise awareness among their loved ones, doctors, therapists and health care team.
“In everything we do, the NFA promotes patient advocacy, best practices for patient well-being and access to the latest research and treatment options”, said Lynne Matallana.
“Our mission is to develop and execute programmes to improve the quality of life for people with fibromyalgia and overlapping conditions by increasing awareness of the public, the government, the media, and the medical community. It is estimated that each year the NFA helps over 1 million people affected by fibromyalgia,” she said.
Lynne Matallana told our reporters, “Today both the medical and business communities have become even more interested in people with fibromyalgia and new research is moving us closer to better treatments and a new appreciation of the needs of people with fibromyalgia. The experts now have new information and options to share with us, so that we can learn new ways to improve our symptoms and have hope for an even better future. I hope that FAME 2006 will provide you with the knowledge and motivation to improve the quality of life of your members and that together we can celebrate the fact that there is hope for an even better tomorrow!”
The NFA has grown beyond the original dreams of Lynne and Karen, into an organisation that touches the lives of millions of people each year. They hope it will continue to grow, meeting the needs of people with fibromyalgia and offering a beacon of hope for the future and the next generation.
The Convention Mission is to provide an international conference to bring together the most distinguished clinicians and researchers in the field of fibromyalgia and to allow them to provide those present with the most factual and up-to-date information on the aetiology and treatment of fibromyalgia. The organisers planned a conference, which was unique in the diversity of the format, allowing the attendees to learn through educational presentations, round table discussions, and interactive workshops. The goals were to help patients learn ways to better understand their illness and to improve their overall health, to provide an opportunity for networking and idea exchange, and to create a media opportunity to promote and encourage fibromyalgia awareness. During the conference Lynne Matallana gave three interviews to the major press, radio and TV stations to promote awareness.
Lynne Matallana with Jo
THE CONVENTION
by Jo Fisher and Jeanne Hambleton
Said to be the “most comprehensive and helpful convention ever held for people suffering from chronic symptoms of fibromyalgia”, patients, members of their families and other interested parties were invited to hear numerous presentations from experts. Sufferers joined in with workshops, networked with other patients and the experts, heard “motivational speakers”, and listened to the “most up to date information on how to live well despite fibromyalgia”.
This FAME convention was close to Disneyland, California and those who came with family (“normals” or “controls”: a term used by the US medical profession) found time to enjoy a mini holiday including whale watching, a visit to Catalina Island, and the prestigious Pacific Aquarium at Long Beach where the old Queen Mary is moored. Needless to say we missed out on all of that – far too busy!
Some of the American Fibromites had just managed to scrape enough money to get to the convention and they were excluding any luxuries. The information presented was so important that many were taking notes to write articles in their newsletters to spread the word. Anyone interested in attending the next convention will find California is a good holiday venue with the Grand Canyon, Las Vegas, San Diego and the Mexican border all accessible. The NFA arranged reduced fees for special delegates’ accommodation and they will doubtless be doing it again. It was an excellent convention and well worth a visit.
The first day of the convention started with registration of delegates and breakfast at 7am, and ended with the NFA Award Ceremony at 8.30pm: some thirteen and a half hours later. There were, however, a number of “fanny fatigue breaks” which is how the Americans describe a visit to the restroom (toilet in English)...but it WAS a long day by any standards apart from having FMS. This set the pace for the rest of the event.
In an attempt to provide something of interest to everyone the whole time, it soon became evident that there were three different venues, each with a speaker on a different topic, all starting and ending at the same time. The presentations were tightly scheduled with a member of the Management Board introducing the speaker and then displaying a sign saying 3 minutes or 1 minute remaining to ensure the presentation ended on time and the room was cleared for the next presentation.
There was also an exhibition with more than 80 stands selling books and videos about fibromyalgia, remedies to get well, details of new treatments and treatment centres.
Entrance to the Exhibition
 
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Buy-at the FMS SAS on-line shop.