Blog inactive

This blog is no longer active. Please see fibroaction.org for information on Fibromyalgia Syndrome.

 

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/

 

We did it!

On Monday at 7pm, Andrew Holman MD gave a lecture at Guy’s Hospital, organised by FibroAction. Yes, we did it! And it was amazing. I only wish we could have had three days of Dr Holman’s time!

I’m now shattered and am going to take Christmas off and then work on editing the podcast and working on the website redesign. Check out fibroaction.org in the new year for all the new content and easier to use layouts.

And watch this space for details of the next FibroAction UK lecture!

 

Healthy Holiday Party Options

Over at butyoudontlooksick.com there’s an article up right now on eating and drinking healthily during the holiday period.

See the article here.

 

Send e Cards this Christmas

FibroAction are one of the charities that can benefit from EveryClick’s ‘Christmas? Considerate Done’ campaign. The idea is you save money, save paper and help support FibroAction by sending e-cards for Christmas.

The data from EveryClick is that on average, charity Christmas cards give just 10% of their cost to charity (based on data from the Charity Advisories Trust). With EveryClick, 121%* of the amount you donate will get to the charity you choose. This Christmas it really is possible to spend less and give more. Christmas cards generate up to 20,000 tonnes of waste each year (based on data from Defra). Giving through EveryClick means you can send your contacts a menaingful greeting without filling up their recycling bins.

The minimum donation is only £5 and for that you can send a Christmas card to up to 100 recipients.

Check it out here.

 

Positive results for Xyrem

Jazz Pharmaceuticals, Inc. and UCB last week announced positive preliminary top-line results from the first of two Phase III pivotal clinical trials of sodium oxybate (JZP-6) for the treatment of Fibromyalgia Syndrome (Fibro).

Jazz Pharmaceuticals anticipates submitting a New Drug Application for sodium oxybate to the U.S. Food and Drug Administration by the end of 2009. UCB anticipates filing in the EU shortly after. UCB has the exclusive marketing and distribution rights to sodium oxybate for Fibromyalgia Syndrome in Europe and some other countries outside North America.

For more information, see the FibroAction article.

 

Twin Study suggests that Fibromyalgia Syndrome has a strong genetic background

Fibromyalgia Syndrome symptoms seem to have a strong genetic background, according to an article e-published ahead of print in the European Journal of Pain, that was discussed on FibroAction’s website recently.

A team of researchers from the Pain Clinic at Helsinki University Central Hospital, Finland studied the prevalence and heritability of symptoms associated with Fibromyalgia Syndrome (Fibro) in a population-based working-age twin sample.

The researchers concluded that:

“The symptoms known to be associated with fibromyalgia seem to have a strong genetic background.”

To see the full article on FibroAction’s website, click here.

 

Spoon Queen Interviews American Idol star

Leslie Hunt talks Lyrics, Life, and Lupus with ButYouDontLookSick.com founder Christine Donato. If you ever wonder how far you can go with a chronic illness, just check out these chronic babes!

Leslie Hunt has been performing as a musician since childhood and by the age of thirteen, Leslie had starred in productions of “Fiddler on the Roof” and “Music Man” and performed on stage with Kenny Rogers. She was in American Idol Season 6 (2007)…and at the age of seven, Leslie was diagnosed with Lupus SLE.

Christine Miserandino, a fellow Lupus patient is a member of the Lupus Alliance of America Board of Directors, and founder of ButYouDontLookSick.com. She is loved the world over for ‘The Spoon Theory’, her tale of what life is really like when you live with a chronic invisible illness.

Check out Christine’s interview with Leslie here.