Fibromyalgia Awareness Week 2007
A Family Day, was held at the Y Centre, Albion Way, Horsham on Sat. 15th September
The event was attended by about 70 people, a capacity audience. There were exhibition stalls in the atrium and the lectures were held in the conference room.
There was a series of short talks about health issues surrounding fibromyalgia, including
- Research into Fibro at Brighton and Sussex Medical School - Alice Theadom
- Contact a Family - Sarah Rush http://www.cafamily.org.uk
- Active Life Exercise Referral Scheme - Matt Laird
- Holistic Therapy - Denise Baldock http://www.holistichappiness.co.uk
- PCT & Carers - Liz Catchpole http://www.westsussexpct.nhs.uk/about-us
- Inspirability - Nic Holc-Thompson http://www.inspirability.org.uk
- GP FMS Sufferer - Dr Carla Maclaren was the main speaker of the afternoon
Guest Visitor was Dan Austen, Manager of the Fibromyalgia Clinic at Guy's Hospital, London
1. Thea - The Raffle
2. Jo - FMS Information Table
3. Inspirability
4. Connexions
5. Denise Baldock - Holistic Therapy
6. The Audience 1
7. The Audience 2
8. The Audience 3
9. Liz Catchpole
10. Dr. Carla Maclaren
The celebration for the last day of the National Fibromyalgia Awareness Week at the Y Centre in Horsham on Saturday (Sept.15) was voted as a big success by the capacity audience who listened to a Scottish GP with fibromyalgia since her teens, a research doctor from the Brighton & Sussex Medical School diagnosed 10 years ago, the manager of a specialist FM clinic in London and several other key speakers.
The audience, mainly Fibromites, keen to learn more about their invisible disability, were welcomed by Malcolm Rose, chairman of the Fibromyalgia Support Group for Surrey & Sussex, who hosted the Awareness Event. With tongue in cheek, Malcolm Rose gave the audience permission to get up and move around during the 3 hour presentations, recognising that stiffness from remaining seated too long, was a major problem for Fibromites. The six speakers delivered their presentations with breaks for refreshments, stretching and movement.
The speakers offered help and guidance on living with fibromyalgia, an incurable syndrome for which there is no cure. As most of the audience suffered with pain, chronic fatigue, sleep disturbances and other symptoms, the speakers talked about positive outlooks, active life styles, exercise, nutrition and moving on with life.
One of the key visitors who talked to individual Fibromites was Mr Daniel Austen from the London FM Clinic. A keen supporter of the work carried out by the Fibromyalgia Support Group for Surrey and Sussex, Mr. Austen is associated with Professor John Davies, a Fibromyalgia specialist, who runs FM clinics in Bristol and at Guy’s Hospital in London.
Medical Dr Carla Maclaren, who drove for 8 hours from Scotland to give the presentation, had recently returned from a fibromyalgia conference in Washington, USA, with Josephine Fisher, the development officer and founder of the Surrey and Sussex FM Group.
Dr. Maclaren reminded the audience that between 2% and possibly 10% of the world’s population suffered from fibromyalgia and although this affects mainly women, men, children and teenagers could also be diagnosed with this syndrome.
Having adopted a holistic approach to her own illness the Doctor described Fibromyalgia as having “unpredictable symptoms, which have the most effect on our lives” but lifestyle management such as pacing, goals, therapies and a positive outlook, does help.
Dr. Maclaren said that those most likely to be diagnosed with FM may have had an adverse lifestyle, faced trauma, be linked genetically, suffered a virus or be an A type personality – high achiever. She said there were many theories about the causes but the re-programming of the brain and it’s ability to maintain a regular natural function, was said to play a part.
She recommended Fibromites form a partnership with their GP, who were as anxious as the patient to see them well. Dr. Maclaren, who also suffers from M.E. recommended patients to work with their doctors. She said at the end of the spectrum those who had fibromyalgia had pain while those with M.E. had fatigue.
Alice Theadom, a researcher from the Sussex Medical School, who was diagnosed with Fibromyalgia 10 years ago, spoke about sleep disturbances experienced by Fibromites.
She had spent 5 years doing research into fibromyalgia and was currently researching sleep disturbance. Research had shown that poor sleep quality is linked to higher levels of pain and fatigue in people with fibromyalgia. A recent research study had found that an approach called mindfulness could improve sleep quality for people with insomnia. She said the study she is doing with Dr. Mark Cropley of the University of Surrey, was to establish if a mindfulness relaxation approach can help to improve sleep quality of life for patients with fibromyalgia.
Anyone with fibromyalgia and insomnia who is over 18 can take part in the study. The patients were required to keep a sleep diary, ensure their bedroom was conducive to sleep, wear a special watch to monitor the sleep patterns, and do specific exercises. This could all be done without leaving home. For more information about the mindfulness sleep survey telephone Joanna Rodriguez at the University on 077478823645 or email jroooo8@surrey.ac.uk.
Matt Laird, Assistant Fitness Manager & K2 Active Life Scheme Co-ordinator talked about his work with people with chronic conditions including those with fibromyalgia and about helping sufferers of this condition working individually to create a programme specifically for them.
Liz Catchpole, a speaker from the NHS - West Sussex Primary Care Trust – spoke of a new ‘Looking after Me’ courses, designed to help carers, who are often overshadowed by the problems of the person they care for. In West Sussex alone there were 73,000 carers, which represented a “huge army”. Efforts were being made to raise awareness and the concerns of carers – often spouses, families, children or neighbours. National research had shown carers have their own problems – mainly back care. Funding for back care courses and help with new equipment and techniques were being investigated. Liz Catchpole outlined the work of the PCT, and the success of Expert Patient Programmes organised by lay people with chronic illnesses.
Nic Holc-Thompson from 'Inspirability' from Havant, told the audience about his wife Cathy, disabled with fibromyalgia, and how together they had developed a successful pain management scheme, which continued beyond the initial training. This pain management model was now being considered for adoption by various local authorities throughout the country.
Denise Baldock from Brighton, a holistic nutritionist outlined her success with a patient with fibromyalgia with diet changes and balancing the energies with a nutrition plan using natural products.
Sarah Rush spoke from 'Contact a Family' a charity for families with disabled children.
Sue Berry was one of the exhibitors on the day. She was from 'Connexions' that can offer all the information and advice 13 - 19 year olds need to make decisions and choices in their lives.
At the end of the afternoon, after the showing of a new DVD about Fibromyalgia, called 'Show Me Where It Hurts', Jo Fisher, the founder and development officer of the Surrey & Sussex Group, said that organising the event had been hard work but well worth it.
“The Group will now be considering another afternoon seminar at the Y Centre. People who have fibromyalgia are always keen to learn about new medications, treatments and progress towards a cure. It was very gratifying to see the hall filled to capacity. The success is also due to the hard work of the Committee,” said Jo Fisher, who herself suffers with fibromyalgia, an illness that forced her to give up nursing.
For more information contact Jo Fisher Tel: 01403 255450 Email: Development.officer@fms-sas.co.uk
The following message was received after the event:
"Thank you so much for putting on the Fibromyalgia Information Day, your efforts were really appreciated. These Fibro information days get better and better with more information every year and there is always something new to take home with us which certainlyy gives me some hope for the future. I particularly liked the talk by Dr Carla MccLaren, she was very inspirational. She highlighted some points in her talk that I could really relate to. She was clearly exhausted but nevertheless managed to show us her sence of humour. It was very useful for me to hear from a professional in the medical field who had decided as I have, to take the non presciption route to help with her condition. I know its a long way from her home but it would be great to hear her talk again. If you hear of her doing any other talks in the South East, I would be interested to know where and when.
Another thought I had about the benefits of the Fibro day for me was hearing speakers who have the condition but nevertheless continue to work. Positive images of people with Fibro are important for us to see and give us hope.
So many thanks again and well done for organising such a good event.
Debbie
 Joan Chappell's Coffee Morning - September 2007
  |
Buy-at the FMS SAS on-line shop.