Pfizer’s Lyrica gets refused EU Approval for Fibro

Breaking News: Pfizer’s Lyrica has today been refused European Marketing Approval as a treatment for Fibromyalgia Syndrome (Fibro). For more info, see fibroaction.org.

 

VIP Football Tickets being auctioned in aid of Fibro awareness

A VIP trip for two to a football match of your choice at Crystal Palace Football Club is being auctioned off in aid of Fibro awareness on BuyOnceGiveTwice.

Includes 2 Directors Box tickets and Executive Lounge tickets passes, the certificate entitles the bearer to two seats in the Directors Box at a Crystal palace Football Club match of your choice (Season 2008/2009, subject to availability). PLUS, two passes for the Executive Lounge.

This is an opportunity to watch a football match as a VIP would. These tickets are not normally sold so their cost is unknown….but two normal tickets for regular seats in the stands would vary from £50 to £100. And this should be far more of a special day out that just going to watch a football match.

Crystal Palace Football Club have home games scheduled with:

• Wolverhampton Wanderers on Tuesday 3 March;
• Preston on Saturday 7 March;
• Reading on Saturday 21 March;
• Cardiff City on Saturday 11 April;
• Derby County on Saturday 18 April;
• Sheffield United on Sunday 3 May.

Crystal Palace Football Club donated this now-unwanted prize to a charity auction in aid of Fibromyalgia Syndrome awareness. Former model Suzi Walker, girlfriend of Crystal Palace Football Club Chairman Simon Jordan, has been helping raise awareness of the condition.

Please note: the dress code for the director’s box is lounge suit, strictly no jeans, trainers or replica shirts.

Click here to go to the auction page.

 

Vote for the Spoon Queen

It is health blogger award season – and Spoon Queen Christine Donato needs your help! butyoudontlooksick.com/ christine could really use your voteas the deadlines for votes are coming up– so please take a minute and help bydls.com out! The following awards only take 2 minutes or so to vote- and if you can share/ ask your friends to vote too- that would really help!

1. Wellsphere Health Blogger Award:
http://www.wellsphere.com/voteBlogger.s?bloggerId=93805

2. The twitter shortyawards (in health category)
http://www.shortyawards.com/category/health

If you’re wondering “what’s all this about spoons”, check out the Spoon Theory: http://www.butyoudontlooksick.com/the_spoon_theory/

 

FibroAction Christmas Appeal

My Christmas Appeal for FibroAction…I’d like to try and raise £500 for FibroAction over the holiday season in order to raise awareness of Fibromyalgia Syndrome (Fibro). If you feel you can help, even if it’s just a few £ or $, then thank you!

Why am I doing this?
Fibro is a devastating condition that can ruin people’s lives. Because of Fibro I lost half my twenties to illness, disabled and unable to follow the career I had worked so hard for. I then found a good doctor, got effective treatment and found that I need not have lost so much, if only help had been available. I want to try to help other people with Fibro get back on their feet and maybe prevent people from having their live turned upside down by this condition.

Why FibroAction?
FibroAction is a new charity that I helped set up this year that has achieved wonders in a short space of time with a tiny budget. Organisations like the NHS (UK National Health Service) and the BBC have updated their information on Fibromyalgia Syndrome (Fibro) thanks to FibroAction and numerous sufferers have been helped.

However, funding is needed to enable FibroAction to carry on with its work and to have even more of an impact in 2009.

We know the credit crunch is hitting many people hard, but people with Fibro can be even worse off and many Fibro sufferers are struggling to stay working or go back to work, despite not receiving any effective treatment for this debilitating condition, because their family’s finances are suffering.

The provision of good information and support can enable sufferers to get the treatment they need and this is one of FibroAction’s core tasks.

Please help support FibroAction at this difficult time and make a difference to millions of people who are suffering, many unneccesarily.

Why £500?

I’ve aimed for £500 as this isn’t a huge sum when split amongst many – every £1 or £2 or $1 or $2 helps! – but it would be a significant amount of running costs for FibroAction. Money is made to stretch an awfully long way with FibroAction!

How to Help?

Click here to go to my appeal page.

The appeal page is on EveryClick’s website – they provide a one-stop-shop enabling everyone to access effective and engaging ways to give online to any UK charity. The Charities Trust collects all payments, reclaims Gift Aid, and disburses money to charities monthly.

For a currency converter, click here.

Thanks for reading and thanks for helping!

 

UK Government Petitions

Two petitions regarding Fibromyalgia Syndrome that have been submitted to the No. 10 Downing Street website are coming up to their deadlines soon. If you’re a UK citizen or expat and haven’t “signed” please do so! If the petitions get enough signatures then a Government representative will reply to them.

The first has a deadline of 10 December 2008.

“We the undersigned petition the Prime Minister to Ease the pressure on fibromyalgia sufferers and the benefits system including medical assistance. “

http://petitions.number10.gov.uk/Fibrobenefit/

The second petition was one I submitted when working for FMA UK briefly at the beginning of the year. Its deadline is 21 February 2009, but it currently only has aroun 100 sigantures!

“We the undersigned petition the Prime Minister to ensure that doctors are educated about Fibromyalgia and Myofascial Pain.”

http://petitions.number10.gov.uk/FMS-CMP/

Remember that after submitting your name and address (for verification only) you need to click on the link in the confirmation email or it won’t count.

 

Pain Blog Carnival

The September Pain Blog Carnival is up at How To Cope With Pain with a theme of New Beginnings.

 

Grand Rounds 5.1

Grand Rounds 5.1 is up at Emergiblog, wher Dr Val and the Voice of Reason is guesting whilst waiting for a new site. A massive bunch of posts, appropriate for Grand Rounds fifth birthday! Dr Val choose to present the submissions in their authors’ own words – the purest form of expression – selecting a favorite quote from each blog post, and organising them topically with an introductory cartoon. The order in which they appear reflects the order in which they were submitted.

 

NHS Choices Updates Fibro info

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!

 

Invisible Illness Awareness Week

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.

 

Emily Maguire: Fibromite & Singer-Songwriter

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!