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First Regional Fibromyalgia Conference in Liverpool

I welcomed everyone to Liverpool, City of Culture 2008, and John Moore’s University.  We had delegates who have travelled from Scotland, Ireland, all parts of England and Wales. 

Image Seven years ago my mentor Bob Stewart at a group leaders meeting had the idea of giving me the North Wales and Northwest region and making me Regional Coordinator.  This was one of the biggest regions of groups and helplines. Eighteen months ago at a meeting I had the germ of an idea to hold a Northwest Conference.   Indeed many of my key groups are represented here today. 

My own Merseyside & Wirral, Wrexham, Sale, West Cheshire, South Cheshire, Blackpool, Burnley & Bolton, Southport, and Carlisle.  Thanks to them and all of my regional groups who donated raffle prizes as the money raised was going to FMA UK as well as £1 per ticket making a total of £203 which I’ll present at the Regional Co-ordinators meeting in November. I think it is important that FMA UK gets help too; we all are unpaid volunteers many of whom don’t even get any expenses from group leaders upwards.

I am honoured to work with the guest speakers; they are all professional people who had given up their time and expenses to be here today and all experts in Fibromyalgia.  As you might not know, I’ve run this conference on a zero budget.  If these speakers had charged a fee, the tickets would have been £50-£60, rather than £15.  I hope all delegates appreciated them as much as I do.

Speakers were:

  • Dr Andrew Wright MB DRCOG MRCGP DCH expert on all fatigue illnesses.
  • Carol Wilcock Craniosacral Therapist who has had great success in the treatment of Fibromyalgia.
  • Dr Neil Fell Director of Total Fitness who I have spent the last seven years working with allowing all my members across my whole region a special rate in joining Total Fitness to access the best in Fitness Hydrotherapy and Rehabilitation. This alone has encouraged 99% of my members to join a fitness centre. I also run a special Fibromyalgia class every week with a trained personal trainer paid for my Dr Fell.
  • Dr Yee Ho Chiu MBC MRCP, Phd – Dr Chiu is the newest of all my medic team and chose Fibromyalgia as his specialist subject. He is an exciting speaker with a completely different outlook to the patient appointment process. He will eventually hope to open a dedicated Fibromyalgia clinic in Liverpool.
  • Dr Nicola Adams  - On her recent research with FMA UK on Complementary Therapy and Fibromyalgia. Dr Adams was my main point of contact helping me book the venue and the caterers, with her colleague Robert Hardy-Pickering who also helped on the day with the technical side of things.
  • Dr Andrew St Clair Logan – Dr Logan is another Fibromyalgia expert on pain and also runs The Pain Clinic.
  • Janet Horton represented the board of trustee from FMA UK and spoke of our organisation and was available all day for benefit advice.
  • Stephen Hesford MP was the first MP I converted to join the APPG and has proved to be a gem, he answers every letter from Fibromyalgia constituents and updated us on how important it was for every sufferer to visit their local MP’s office or write an individual letter voicing their concerns and what they would like to see changed in the treatment, diagnosis and training of new medics. He advised not to use a standard letter as MP’s have thousands of APPG’s so we have to make ours a case they will warm to join and fight our cause. We need 300 not 30 MP’s so the importance is down to each sufferer to do something.

I want to thank Cherry Active, Nutri Centre and all the other business stands that attended.  That ended a very long and enjoyable day. I never in my wildest dreams thought it possible to achieve organising a conference, speaking in public and running all my groups.

I used to be a very shy quiet top hairstylist. Then I was diagnosed with Fibromyalgia as well as loosing all but 20% of my hearing. I went to a FMA UK Conference and met Bob and he helped change my life turn around a poor support group and with Pam helped my every request. We all miss him and I hope that he is on a little cloud somewhere looking down thinking how I turned something very negative into something very positive and achieving the biggest achievement in my life.

Yours Faithfully
Sue Strafford-Binks
FMA UK Regional Co-ordinator Northwest

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