Fibromyalgia Support Group for Surrey and Sussex

International Fibromyalgia Awareness Day, 12th May 2007

Pam Stewart MBE, Chair of the Fibromyalgia Association UK circulated a Press Release to mark the occasion. It is provided here as a MS Word document that can be opened and printed. Please take it to your local press and make them aware of the activities to raise awareness in our own area. Thank you. Download it here.

Events were held in several locations within Surrey and Sussex during the weeks before as well as on the day itself.

Bexhill

Anne Sediki's flat in Bexhill was the venue for two small gatherings on 9th May in order to view the DVD "Living with Fibromyalgia"

Horsham

The Millennium Hall, Roffey, Horsham was the venue for a joint meeting of the Kent & Sussex ME/CFS Society and the Fibromyalgia Support Group for Surrey and Sussex (FMS-SAS) where over 100 people attended. Before the meeting officially began a slideshow of the various aspects of the FMS-SAS Group's activities was screened. The event was Chaired by Janet Boniface, the FMS-SAS Secretary.

The main speaker was Professor Basant Puri who is a consultant in imaging and neurological disorders at Hammersmith Hospital, London. He has a special interest in brain and spinal cord disorders and has contributed to many peer-reviewed scientific papers. His research has been curtailed through lack of funding which is disastrous for ME, CFS, FMS sufferers. He is one of few specialists who recognise that these syndromes are real and has his own theories about the origins and treatments of the disorders. He is eager to carry out the necessary double blind placebo-controlled studies to prove his theories. His research includes magnetic resonance scanning and dietary studies. He is prepared to continue his studies despite lack of funding, but it will be slow because he will not be able to devote as much time to it as he would like. His best advice under the current situation is to eat healthily (with special attention to essential fatty acids), drink plenty of water, exercise mildly and take pacing seriously!

During the lunch break there was the opportunity to talk to Prof. Puri, to our MP Francis Maude, who paid a flying visit, as well as to Trustees and other members. Both the ME/CFS and FMS-SAS had stalls with items appropriate to each condition, DVDs pens and lapel pins / books, supplements etc. Tickets were sold for a mammoth raffle which was drawn at the end of the meeting.

Worthing

An event was held at Methold House Worthing to Celebrate World Fibromyalgia day on Saturday the 12th May. It was attended by around 60 people who were either sufferers of Fibromyalgia or family members. The meeting was chaired by Tony Ede one of the group's trustees. Other trustees were available to talk. They included the Founder and now Development officer, Jo Fisher. There were also other volunteer members there to support and talk to the guests and members.

Jo said 'It was great to see so many here today and to know that we had brought together many new people who had never met others like them with the condition before. This can be very overwhelming for some at first as many have felt totally alone and completely isolated for years. It is such a relief for them to know that they are no longer on their own and there are people that truly understand what they are going through.'

There were also family members who said it was so nice to meet other carers partners and family members that they could also talk to because this affected them too. One husband whose wife has the condition said 'The last few years have been awful there is nothing worse than watching someone you love in pain and feeling so ill and not knowing what to do for her or how to help her. It has left me feeling so helpless at times. It has also been extremely frustrating not knowing where to get the help so to be able to come here today to talk to others has been extremely helpful.'

The meeting was opened with a brief talk about the group and then the preview of the 70 minute documentary 'Living with Fibromyalgia' was screened. Everyone then had time for chatting and getting to know each other and learning how people live and cope with this debilitating condition.

The meeting reopened where Tony gave a brief talk and introduced the next DVD, 'Fibromyalgia, show me where it hurts'. Both these DVDs are available for sale through the support group. You can also see information about these two DVDs on this website. See 'Fibromyalgia, Show me Where it Hurts' and 'Living with Fibromyalgia' or contact the helpline 01403 255450 for details about these DVDs or the group itself. Please note that monthly meetings are on the 4th Tuesday of each month at the same venue from 7pm until 9pm. We also hold meetings in other areas of Sussex and Surrey. See details of meetings here.