Living with Fibromyalgia

NHS Choices has updated their information on Fibro. This follows FibroAction’s input leading to NHS DIrect updating their info, which was then also made available on the NHS Clinical Knowledge Summaries website. For more information, see FibroAction’s website.

The info isn’t perfect, but it’s pretty good now. So if you’re in the UK and your GP knows nothing of Fibro or insists nohing can be done for it, tell them to check the NHS website!

Jenni Prokopy, founder of ChronicBabe.com has written a great guest post on the Invisible Illness blog, for Invisible Illness Awareness Week. She discusses “Am I a hypochondriac?”. See the post here.

I was fortunate enough to get the opportunity today to interview singer-songwriter Emily Maguire for FibroAction’s website – see the interview here.

Emily’s story is fascinating – a classically trained muscian who was struck down with Fibro as a teen, she taught herself to play the guitar and started writing songs. Through a mix of lifestyle management, medications and alternative therapies she got control of her Fibro and then went to live in a shack in the Australian outback, where she wrote and produced her first album, which was critically acclaimed in Australia and led to international recognition. Further success has followed: last year she toured with legendary musician Don McLean and this year she played the acoustic stage at Glastonbury.

Her second album Her second album ‘Keep Walking’ – financed by making and selling goats cheese on the farm in Australia – is available to buy from HMV and Virgin megastores in the UK & Ireland as well as from Emily’s website.

Having been touring as a support act for the last year, Emily will be doing her first headline gig on October 16th at Bush Hall, Shepherds Bush, London. For more information, see emilymaguire.com. Hopefully I’ll be there!

One of the most frequent queries I get regarding my blogs is for help in locating the blog posts on the research that showed that Fibromyalgia Syndrome (Fibro) has more consequences and more of an impact on a patient’s life than many other chronic conditions and forms of widespread pain.

All three of these articles have now been reviewed in one article on the FibroAction website Research section here.

An article summarising some of the most interesting research relevant to Fibromyalgia Syndrome (Fibro) that has been published over the last month and discussed in the FibroAction Research section has been published on the FibroAction website here.

Five Members of the European Parliament (MEPs) have this week presented a written declaration on Fibromyalgia Syndrome (Fibro) at the European Parliament.

Around 380 MEPs need to sign the declaration in order for it to be presented formally to the European Parliament. The declaration will be available for MEPs to sign for 3 months from today (1st September 2008).

Please ask MEPs for your area to sign the declaration! Click here for more information, including how to find ut who your MEPs are.

September is a busy month for raising awareness of Fibromyalgia Syndrome (Fibro) and Invisible Illnesses or Chronic Pain Conditions.

September 8-14th is UK Fibro Awareness Week. If you’re affected by Fibro and live in the UK, why not blog about it, email all your friends about it or organise some awareness raising event or activity? Some things going on are:

• On Monday September 8th, listen to BBC Radio 4’s programme Woman’s Hour as they should be discussing Fibro if all goes to plan – more details coming soon!
• On Monday September 8th, there will be two talks in Berkshire by Daniel Austen. At 2pm, he will be talking at Wokingham Hospital, near Reading, and from 6.30pm he will be talking at the Open Meeting of the West Berks ME & Fibro Group, organised with the help of FibroAction, at the West Berkshire Community Hospital. For more info, see the FibroAction website.
• On Friday 12th September, Jeanne Hambleton, of the blog FMS Global News and FaMily magazine, is organising a dinner & fun evening in aid of Fibro awareness and research. The Folly Pogs Dinner and Fun evening will take place at the Chichester Park Hotel, West Sussex, UK and the evening will include dinner, cabaret, comedy and charity auction. For more information, click here.

September 8-14th is also National Invisible Chronic Illness Awareness Week in the US. A number of people will be guest blogging over at the Invisible Illness Blog in the run-up to and during Invisible Chronic Illness Awareness Week.

September is also National Pain Awareness Month in the USA and whilst this is not a UK event, any Brits among you can still do your bit. The Chronic Pain Policy Coalition, of which FibroAction is a member, is leading a movement to develop an improved strategy for the prevention, treatment and management of chronic pain and its associated conditions. Part of this is their campaign to make pain the 5th vital sign in the UK. You can help by “signing” their online petition here – wouldn’t you want your pain levels to be amongst the first things checked when you go into hospital?