Walking the London Loop
Pam Stewart, chair of Fibromyalgia Association UK (FMA UK), has recently moved back to Whitton and on one of her Sunday walks noticed the London Loop symbol in Crane Park. She found the details on the website and gave herself the challenge of walking the whole of this interconnection of 150 miles of pathways on consecutive days to raise awareness of fibromyalgia.
Pam’s husband had fibromyalgia for many years and found first of all that it took years to get a diagnosis and then treatment was not very effective. Information and support were not readily available and many professionals did not even believe it existed.
Over the years the fibromyalgia community has grown, with over 150 support groups around the country. Awareness amongst professionals is much improved although understanding is still patchy. Effective treatment is still difficult to obtain.
At present there are only 2 support groups in the Greater London area and it is hoped that by raising awareness with the London Loop Walk people can be put into contact with others in their area for support and understanding.
2 weeks till new fibro drug?
Following up on your previous article on sodium oxybate in December last year, the time is fast approaching where we will find out if the New drug application by Jazz pharmaceuticals will be approved by the FDA.
In June 2009 when we spoke about Sodium Oxybate the following was said about positive trials:
Jazz Pharmaceuticals and UCB announced on 24th June 2009 that there have been positive preliminary results from the second of two Phase III clinical trials of Sodium Oxybate (JZP-6) for treatment in Fibromyalgia.
Of course when we find out more about this promising addition to the fibro meds on offer we will let you know. You can read Adrienne Dellewo's take on this here.
Choose a song for Fibro
From Carys and Sacred Heart
I have been talking with Des about an exciting project. My husband is the drummer for Sacred Heart and the lead singer, Paul, and I were talking about Fibro and the charity. Paul came up with the idea of recording a song for FMA UK. They aren't just a band rehearsing in the garage but are professional and do gigs all over the country and have an ever growing following. They've released two albums which have had brilliant reviews in magazines like "Fireworks" which is a big magazine in the industry. If anyone wants to check out their reviews then you can see them atwww.sacredheartshakes.co.uk/
So, the idea is they will remix and release a single for Fibromyalgia Awareness week on iTunes, and as a CD available from Amazon. They would split the profits 50/50 with the charity. FMA UK has said they like the idea and are going to help promote it in their magazine etc. The beauty of the project is that it isn't going to cost the charity anything, so every single sold is pure profit for the charity. The CD will have info about the charity and fibro on the artwork and the band will include information about fibro on the webpage.
North Pole Challenge
There’s always someone willing to go that extra mile, but we don’t think this will be beaten. In April 2012 Team AWNTY (Are We Nearly There Yet) 2012. will be racing to the Magnetic North Pole.
We are delighted that we have been chosen as one of the charities they are supporting and you will see they have decided to use the duck as their mascot. They are planning many ducky events and we look forward to keeping you all up to date with these.
Thank you for your support and the fabulous opportunity to raise awareness of fibromyalgia throughout the world. The following is taken from Team Awnty website. Arctic exploration is regarded as one of the most arduous tests of physical and mental endurance in the world with temperatures plummeting as low as -50°c.
Study to discuss your views on living with pain and working life
Thank you for your help with putting up a web notice asking for volunteers for the pain and work study based at the University of Bath. I have had a lot of participants, more than I hoped for, and am interviewing many resilient people, whose experiences are insightful and important.
It has been a real privilege to share peoples' views. I may need more participants after September, once I've analysed this data set, but for the moment I need to pause and ensure I do justice to the data I already have.
Would you be willing to discuss your views on living with pain and working life? Researchers are looking for people living with pain to discuss how it might affect the ability to work and sickness certification. This will be at your convenience; you can be interviewed either face-to-face or over the telephone, or participate in a local focus group.
Read more: Study to discuss your views on living with pain and working life
Launch of the New Team Fibro T-Shirts
Dr Andrew Logan was our guest speaker at our June meeting.
I would like to thank Dr Andrew Logan for attending our meeting and launching our new “Team Fibro” tee shirts and giving an informal presentation on pain and fibromyalgia. We work closely and we thought it would make a change from formal presentations.
Dr Logan talked about the development of pain management services in the UK, with The Walton Centre in Liverpool playing an important role in both the introduction and its development. In the early days pain management began as an extension of the duties of the anaesthetists who focused on nerve blocks and injections. Whilst injections still play a role for some patients, pain management has moved on taking a more holistic approach, looking at the whole person and how the patient’s quality of life can be improved.