Fibromyalgia Conference
by Kelly Thompson
[The conference was held at South Downs Holiday Village, Bracklesham Bay, West Sussex from 8th-11th April 2011]
In honesty the reason I attended the conference was to meet other fibro sufferers; other people who understand what I am going through physically, mentally and emotionally. The lecture conference part was informative with many people talking about their professions and chosen fields and I learnt a lot but it still came second in my opinion. A lot of the medical professionals either suffer from fibromyalgia themselves, know people themselves who suffer from fibromyalgia or are professionals in fibromyalgia.
There was a lot of very good entertainment including a racenight, a medium, a best dressed duck competition! a comedian etc. There was lots to do in the evening. The food was quite good and they catered to people who had allergies eg people on my table had allergies to wheat, milk etc. and were given alternatives!
I attended a very good question and answer session on dental health held by Jane Russell; a dental hygienist who is also a fibromalgia sufferer. She answered a lot of questions people had on fibro - questions to do with enamel, tooth sensitivity, vitamin deficiencies effecting teeth etc. She recommended lots of products and treatments to help people with their various problems.
I also helped out with the Basic Computer Session which was supposed to be held by Stella Bernardi but, due to sickness, was held by Ray Brunton . It involved random questions by new computer users; we used a computer to answer their questions.
I attended a Tai Chai class which I found quite tiring but I was in a wheelchair; most of the people there were able to stand and do the exercises. The instructor Chris Milton ran through some exercises which the "class" repeated, apparently Tai Chai is based on a martial art form but is very slow and is meant to relax and tone the body. Chris has had a lot of experience of doing Tai Chai with disabled people and was able to adapt it to people in wheelchairs and people who were unable to stand for long periods of time.
I also attended a lecture on complex therapies given by Kim Lawson ( k.Lawson@shu.ac.uk) which was basically on medications used with fibromyalgia eg Amitriptyline, Pregabalin, Gabapentin, Duloxetine, Milnacipran, Fluoxetine, Sodium Oxybate, Pramipexole etc and how they worked with pain, fatigue, sleep, physical function and mood. A lot of details of clinical data was included about clinical trials, about how each medication worked with people with fibromyalgia. It was found that with most of the drugs about 50 per cent found benefit, also 50 per cent didn't. Some people don't find benefit from any drugs but find benefits from other sources.
She believes each treatment should be tailored for each person, individually tailored exercise programs, cognitive behavioural therapy, heated pool therapy, relaxation, rehabilitation, physiotherapy, acupuncture, chiropractic. Guidelines recommend appropriate treatments to address multiple symptoms and using a mixture of both medicines and non-medications can lead to more preferable outcomes.
I attended a talk by Dr Thierry Conrozier who is a consultant rheumatologist in France. He spoke about basically what fibromyalgia is eg fatigue, sleeplessness, pain etc and how lots of other conditions can mimic or overlap fibromyalgia, eg polymyalgia, arthritis etc and how different treatments both medical and non-medical can be used in the treatment..very similar to the previous lecture. Fibromyalgia in large part is pain, fatigue, dizziness, drowsiness and the others. He has designed a medication called Fibromyalgine, to work alongside pharmaceuticals which is all natural ingredients which have effects similar to ibuprofen also is Fibromyalgine evening which is a natural form of sedative. These have been given to 2500 patients in France with a satisfaction rate of more than 70%.
I also attended a talk on Evidence based Medicine by Andy Pothecary who talked about the quality of medicine, quality of evidence, how different studies are performed when it comes to medications, surgeries, physiotherapy etc. The term "Medication" can mean other things not just tablets. Andy talked about how people are chosen for drug trials and how trials work, blind trials, double blinded, placebos. It was very difficult to keep up with this lecture as the information was very technical.
On the last day (Sunday) there was a pamper day which had lots of free trials of products as well as stalls selling books and beauty products. This was a big success last year which was why it was repeated this year although I personally think last year was better. A lot of the products were very expensive which is not very good for people who are on benefits, a lot of them at around £50 a month. The trials were a good idea because you could look, feel or use the product but again the expense was a big put off. None of the products claimed to be a cure though which was good as a lot of products on the Internet tend to do this. I think that if these medications do work that some of them should be available on prescription so we dont have to pay the earth for them.
I think a lot of hard work was put into the conference by many people and everything flowed very well. I was very impressed by how everyone worked as a team. Technically this is supposed to be the last conference but I have been told to "Watch this Space" for more news.
(Please note that the views on this are mine .. no one else's. I dont want anyone to get into trouble for anything said in what I have written, All photos used here are my own Copyright.)
Press release by Jeanne Hambleton
Photos of the Fibro Duck Competitions by Rebecca Toogood
General photos of the Conference by Rebecca Toogood
Miscellaneous Photos
 
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