14TH MAY 2007


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). 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 recognize 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.

After the break Colin Barton welcomed the audience on behalf of the ME
Society, Prof. Puri fielded an Any Questions session and ME Association
chairman Neil Riley gave an address about his own ME experiences, recovery and involvement in the Society. Norman Lawrence thanked Jo Fisher and the Committee members who had worked so hard in preparation for and execution of the event.

Fibromyalgia support group for Surrey and Sussex
Helpline 01403 255450
Email : Development.offi…

The advice given in this e.mail does not necessarily infer endorsement by
Fibromyalgia Support Group for Surrey and Sussex, Registered Charity No.
1108454. Any advice or recommendation of a medical or legal nature must
always be discussed with a qualified professional. The Fibromyalgia Surrey and Sussex Support Group cannot be held responsible for omissions and/or errors.



Firstly our committee would like to personally thank the National
Fibromyalgia Association in America for giving us the opportunity to attend the Fame conference last year in California.
This enabled us to meet many new excellent contacts including Daneen Akers and Stephen Eyer who have allowed us to promote and sell their D.V.D. in the UK called Living with FM. We are very grateful to them for giving us this opportunity. We would also like to congratulate and thank the N.F.A for all the great work that they do on behalf of the Fibromyalgia community as a whole around the world. They have given us the confidence to work harder with the Media and with health care professionals.

Raising Awareness For Fibromyalgia For World Fibromyalgia Day In the UK

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 groups 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 carer’s partners and family members that they could also talk to because this affected them to. 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.

We then reopened the meeting again where Tony gave a brief talk and
introduced the next d.v.d. Fibromyalgia show me where it hurts. Both these dvd’s are available for sale through the support group. You can also see information about these two dvd’s on our website or contact the helpline 01403 255450 for details about these dvd’s or the group itself.

Our next general meeting in Worthing will be held on the 22nd May 2007 at
the same venue from 7pm until 9pm. Please note these meetings are monthly on the 4th Tuesday of the month. We also hold meetings in other areas of Sussex and Surrey.

The End

The advice given in this e.mail does not necessarily infer endorsement by
Fibromyalgia Support Group for Surrey and Sussex, Registered Charity No.
1108454. Any advice or recommendation of a medical or legal nature must
always be discussed with a qualified professional. The Fibromyalgia Surrey and Sussex Support Group cannot be held responsible for omissions and/or errors.

FMS Global News



About FMS Global News

Folllowing Rick Usher's death in December 2008, at his request in September of that year, I had agreed, as his principal contributor and an experienced journalist, to run the FMS Global News service due to his heavy commitments to music and raising research funds through this avenue. Following his sad and sudden death I hope to continue his work as he would have wished.
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