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.

 

‘Women, Work and AutoImmune Disease: Keep Working Girlfriend’

Rosalind Joffe is author of the popular blog, ‘Working With Chronic Illness’, and co-author of the blog ‘Keep Working Girlfriend’. She founded the career coaching practice, cicoach.com, building on her experiences living and working with MS and ulcerative colitis, and is dedicated to helping others with chronic illness develop the skills they need to succeed in the workplace.

Together with her ‘Keep Working Girlfriend’ blog co-author, Joan Friedlander, Rosalind has written a book ‘Women, Work and AutoImmune Disease: Keep Working Girlfriend’, which encourages women with chronic illness to stay employed to preserve their independence and sense of self, and helps teach them the knowledge and skills they need to do so. In the book, Fibromyalgia Syndrome (Fibro) is included along with autoimmune conditions such as Lupus and Rheumatoid Arthritis, as the impact and variable nature of the conditions are very similar.

I thought ‘Women, Work and AutoImmune Disease: Keep Working Girlfriend’ was a great book: positive, proactive and good to read. Staying in work is quite often not properly considered as an option for someone with a hronic illness andi shoudl be – with the right advice and support, a working life can be maintained and a work-life balance supported. Work can be very positive and this shouldn’t be overlooked.

This was actually dicussed yesterday at a parliamentary reception I attended that was organised by the Neurological Alliance to highlight the upcoming welfare reforms.  wonderful lady with MS who had worked at the Department of Health for many years after diagnosis spoke and told of how she stayed in work and how positive this was to her for many years.

I wish Rosalind’s book had been around and I had known about it years ago. I would have found it extremely helpful.

I interviewed Rosalind this summer and here are a couple of her answers. To see the full interview, go to the FibroAction website Patients Section.

……………………

Lindsey: What does an executive career coach actually do? I think it is a role more common in the US, but it sounds like something I could have used in the past!

Rosalind: There are several parts to that answer. First as a career coach, my role is to help a person develop the competencies he or she needs to be more successful on the job. Sometimes that means in their current job. Sometimes it means finding a new job or even a new career. As a career coach for people who live with chronic illness, it inevitably includes a clear assessment regarding how the illness impacts their ability to do that job so a person can make the best decisions looking ahead. It often includes working on how you talk about symptoms, accommodations and the other issues that come up when you live with unpredictable and debilitating health. We also work on how to use your networks to get a new job, how to assess an organizational or job fit and so on – all with chronic illness as the backdrop to these decisions. I’ve developed a home study program that’s a compendium to my book and it’s called ‘The Working with Chronic illness Workbook’ – it’s on my website, cicoach.com. It includes many of these assessments. But I do want to clarify that although I was an executive coach at one time, I don’t classify myself as an executive career coach because I work with anyone who cares about work as a career. That’s why my tagline is: The resource for professionals who live with chronic illness.

Lindsey: Many people with chronic illness really struggle at work: I know I have done and I’m sure many readers are thinking that work is not good for their health and maybe they shouldn’t be working. You obviously feel very strongly that women with chronic illness should be able to keep working – and should keep working. It’s something that you discuss from a number of different angles in ‘Women, Work and AutoImmune Disease: Keep Working Girlfriend’, but can you summarise why you think this is so important?

Rosalind: Well, to begin with, as we say in the book, when you stop working, you become financially vulnerable, unless you’re independently wealthy. Even if you have a spouse or parents to support you, you’re relyling on others and that leaves many people feeling vulnerable and hurts their self esteem. And illness leaves you feeling vulnerable enough – and lowers your self esteem. Unemployment usually compounds those negative feelings. Then, there is the social and emotional feedback we get from working that you lose when you’re unemployed. Most of us have had jobs in which we felt we’d rather be anywhere than here, but it’s easy to forget how long a day can be when you’re unemployed. Especially if you’re under 60 and most of the people around you are at work. Also, no doubt, work can be a burden but it can also be a distraction.

That said, I had two children and was so sick with ulcerative colitis that I couldn’t work for two years and could barely get out of bed to get them to school. So I know that there are times when you just can’t work. And there are jobs that are so ‘toxic’ that they are bad for you. Finally there are some people who don’t easily fit into the “working world” and perhaps they wouldn’t have been happy being employed (or self employed) regardless of their health. The book was written for people who want to keep working – to encourage them because there are many factors that make it so difficult, particularly for women.

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To buy ‘Women, Work and AutoImmune Disease: Keep Working Girlfriend’ and help FibroAction whilst doing so, buy the book through FibroAction’s a-store here.