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An International Affair - The Scottish Conference

Do not be misled by the name, the two day conference hosted by Fibromyalgia Association Scotland held in Dundee at the end of the Awareness Week, was a truly international affair. Visitors included delegates from Norway, Sweden, Denmark, Holland, France and Scotland, all representing their FMS Associations.

The Fibromyalgia Conference, which was the second joint meeting of groups and visitors, was held at the Ninewells Hospital Medical University Lecture Theatre, Dundee, and was billed as an event for anyone with an interest in fibromyalgia.
Janet McFarlane and Regional Coordinator, the key organiser, said, “It provided an opportunity to put faces to names and share time together which was informal as well as being informative. There were teas and coffees available all day and a place to sit and have a chat. Lunch was available or visitors were invited to bring a picnic lunch. It was fine to get up and move about to avoid being uncomfortable. There were varied speakers and demonstrations which provided something for everyone.”

Over 200 people attended the conference with 15 information stands providing interest and information. Janet told us, “TAP FM provided the tea and coffees and a beautiful lunch and I would like to acknowledge their hard work. The conference would not have been so successful without their help. I would not have been able to arrange anything without the help and support of Ricky and Mary Stevenson and my husband Alister and I thank them very much.”

Although everyone was given a goodie bag consisting of 2 bottles of water, donated by Highland Spring and Strathmore Mineral Co, a note book and pen, free samples and leaflets. All the speakers gave their time freely and were thanked with a little gift as no fee or expenses were asked for.


THE SPEAKERS


Shona Robison, MSP brought those present up to date with the latest from Scottish Parliament and said she will put a motion for more awareness for FMS. Shona Robinson has proved a very strong supporter of the local Support Group and promotes the cause at every opportunity.


Mr Jim Milne, from the Dundee Anti Poverty Forum, who volunteered to take part, spoke about the petition to abolish NHS prescription charges.


Gerry Crossley, Chairman of the Trustees of FMA UK, brought everyone up to date with the latest happenings within the Association


Peter Kinghorn, the legal expert answered questions on Benefits and Pensions. Another strong voluntary supporter of the local Support Group, he has helped them with different problems.


The “star” of the conference was Grainne O’Brien. who conducted a study of the Experiences of Women living with Fibromyalgia earlier this year for her final year at Queen Margarets University in Edinburgh. She had visited the local Support Group T.A.P. FM and asked if she could have volunteers to take part. With such a lovely manner she got as many as she needed. When asked if she would talk at the conference about her study, she said she did not think anyone would be interested and was delighted by the overwhelming interest from the delegates. Fiona Russell, Specialist Rheumatology Physiotherapist from Inverclyde, was unable to attend due to illness. Instead Janet managed to persuade a friend, GP Dr Helen Murrie to step into the breach. Dr Murrie talked about how difficult it is from the GP’s point of view when there is no system in place for FM patients. It was down to trial and error. She even opened the meeting up to questions.


Janet McFarlane told FaMily, “It was a very informative day for everyone interested in fibromyalgia and we are so grateful to the speakers who were keen to help as much as they could.”


SUNDAY & ENFA


On Sunday there was the annual general meeting of ENFA (European Network of Fibromyalgia Associations) to deal with the annual business and to discuss and plan the way ahead in Europe. It was disappointing that a few could not manage to attend including Ireland and France who were not represented. There were 12 delegates representing Norway, Denmark, Sweden, Holland, England and Scotland.


Robert Boelhouwer, President of the Netherlands FMS Association and Chairman of the European Network of Fibromyalgia Association, gave an up date on Europe. Mr Ian Hudghton, the local MEP provided some information to help plan the way forward for the network. Plans to move ENFA into the next stage of bring all the associations throughout Europe together were put in place and delegates agreed the meeting had been productive.


A WEEK OF AWARENESS EVENTS But the conference came at the end of a very busy Awareness Week full of promotions. Every day there was an information stand somewhere in the local area. Awareness information boards were on view in all the hospitals and Janet gave interviews on both the local radio stations. All the local newspapers carried an editorial.


“FMA Scotland is hoping that its membership will be given a boost by the conference as the more members it has, the more power to its elbow as we approach the Scottish Executive for recognition, support and funding,” said Janet.


BACKGROUND


When Janet first took on the role of Regional Coordinator, there were 4 support groups in Scotland - now there are 14 groups run by hard working volunteers all over Scotland. As their Coordinator Janet provides them with information and advice and gives them the same help and support they give their members. FMA Scotland fills in the gaps where there is no support group by providing a telephone Helpline and quarterly newsletter. There are plans to undertake a series of mini road shows to areas in need of support groups providing funding can be secured.


The current Fibromyalgia Association Scotland (FMA Scotland) was started in November 2003 to provide help for people in Scotland with fibromyalgia, to promote awareness of fibromyalgia and to assist the establishing of Support Groups throughout Scotland.


FMA Scotland is currently working with FMA UK to ensure the medical professionals understand the condition and that FMS sufferers receive the best possible care. There is no known cure for Fibromyalgia, which is one of the reasons that FMA Scotland continues to campaign for more awareness and more funding for research. For more information

email This email address is being protected from spambots. You need JavaScript enabled to view it. or log on to www.fmascotland.org.uk.


IN THE BEGINNING

Before the Fibromyalgia Association Scotland began 2 years ago, there was help in Scotland through ‘FMA Scotland’ that started the same time Bob Stewart took over FMA UK. This was disbanded as the then chairman went into local government and there was no one to take it on.


Janet said, “Resurrecting FMA Scotland was a means to funding the Regional Coordinator’s work and trying to source some funding to attend the European Network of Fibromyalgia Association which I am involved with. So I persuaded two friends who run our local support group and my husband that I needed a committee and the rest is history.


“The Regional Coordinator is meant to arrange at least one meeting per year with all the support groups under her charge and that is how the first ‘conference’ happened. My own local support group agreed to help me arrange that meeting in 2003 and we aimed to have 70 people attending and persuaded the people that help the support group to speak. There were 150 attended on the day. It was such a successful day that we were asked to repeat it. This year it was bigger with 50 extra people attending and becoming aware,” she said.


Keep up the good work Janet and congratulations on increasing the attendance from 150 last year to 200 this year – you and your team are doing a grand job – more power to you elbow.

by Jeanne Hambleton

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