Living with Fibromyalgia

The PolkaDotGals Calendar Campaign for Fibro Awareness is featured in The Sun newspaper today (Thursday July 31).

The PolkaDotGals Calendar, which was the brainchild of ex-model Bianca Embley, a long-term Fibro sufferer, features Fibro sufferers and celebs from the worlds of sport and modelling in tasteful and artistic part-nude poses. The calendar includes model Danni Wells, whose grandmother has Fibro.

I had great fun helping out with the calendar project and I’m so proud to see the finished shots (including props I made!), looking so amazing. Hopefully the PolkaDotGals calendar will raise lots of awareness of Fibro in the UK.

To buy the 2009 calendar, which costs £9.99 plus postage and packing, go to polkadotgals.com.

For information on Fibro that doesn’t require an SAE, check out the FibroAction website!

Randy Pausch, the Carnegie Mellon Computer Science professor who became a world-wide sensation last year with his “Last Lecture”, has died of pancreatic cancer aged 47.

Last September, Randy Pausch addressed a crowd of around 400 Carnegie Mellon faculty and students as part of the university’s “last Lecture” series. In these lectures, professors typically talk about issues that matter to them. Randy Pausch brought a whole new meaning to the Last Lectures when he opened his talk with the news that he had terminal pancreatic cancer. He then proceeded to give a funny, moving, heart-warming talk about the lessons he had learned in life that he wanted to pass on to his children.

Carnegie Mellon alumnus Jeff Zaslow, a columnist with The Wall Street Journal, was sitting in the audience and wrote about the lecture, which went on to become a worldwride phenomenon. Media outlets and bloggers linked to the story, and more than 10 million people have since watched an Internet video of the talk. The lecture was translated into seven languages, and Hyperion published a book version that became a New York Times bestseller.

He is survived by his wife Kai and children Dylan, Logan, and Chloe. Donations can be made to the Carnegie Mellon’s Randy Pausch Memorial Fund.

I recently interviewed Rosalind Joffe for FibroAction and you can see the interview on the FibroAction website here.

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 took the opportunity to discuss the book, coaching, working with chronic illness and life in general with Rosalind and think it’s a great interview. Check it out!

Calling all physically fit carers, friends and relatives of ME patients. Your help is very urgently needed and may be of great assistance to the UK ME community.

Professor Basant Puri urgently needs 10 PHYSICALLY FIT individuals between the ages of 18 to 55 to contact him concerning participation in his current ME/CFS biomedical brain studies on ME/CFS patients.

These individuals will act as healthy ‘control-subjects’ in his study and must not have ME/CFS or have had any major illness. They will attend Hammersmith Hospital on ONE of two dates in London (Sunday 3 August OR Sunday 10 August 2008) for MRI brain-imaging, cognitive function tests and an EEG.

Candidates must not have any metal implants in their body in order to go through the MRI scanner: most dental work is safe in this respect but needs to be mentioned to Professor Puri to be verified. Participants who have worked with grinding metals/sparks must also mention this. There is also space for one more properly diagnosed ME patient to participate in the study on one of these dates.

Participants will need to fund their own travel costs but there is ample parking available in the Hammersmith Hospital car park. Please do NOT contact me about this matter but please do contact Professor Puri direct as soon as you can for full details if you can help/participate. His email
address is:

basant.puri@csc.mrc.ac.uk This email address is being protected from spam bots, you need Javascript enabled to view it

It is very important for the ME community that this work is completed as soon as possible and that these study slots are filled. PLEASE HELP. Treat yourself to an interesting trip to London in aid of a good cause!

Many thanks indeed.

Kev Short.
Anglia ME Action.

PERMISSION TO REPOST.

Jeanne Hambleton, of the blog FMS Global News and FaMily magazine, is organising a dinner/dance in aid of Fibro awareness and research.

The Folly Pogs Dinner and Fun evening will take place on Friday 12th September, from 6.30pm at the Chichester Park Hotel, West Sussex, UK.

Tickets are £30 and you can book tables of 10 or 12 in order to sit with a group of friends.

I understand that money raised by the event will be used for the publication of Jeanne’s upcoming book, profits of which will go to Fibro research.

For more information and to book tickets, please email Jeanne.

I hope to see you there!

Press release 16 July 2008
A step in the right direction for Fibro and the NHS

FibroAction is delighted to announce that their input has led to NHS Direct fully reviewing and updating their website information on Fibromyalgia Syndrome (Fibro). This updated information is also available on the NHS Clinical Knowledge Summaries website. Despite still being in the process of becoming a registered charity, FibroAction is already having an impact.

Fibro is a debilitating, chronic condition whose main symptoms are widespread chronic pain, hypersensitivity to pain and chronic fatigue. Despite the high numbers of sufferers (between 1.2 and 2.7 million people in the UK alone), awareness of the condition, and the knowledge and treatments available for it, is very low, even amongst medical professionals.

The NHS Direct website is the first port of call for many patients and the media and the much expanded and improved Fibro topic will help to raise awareness of the condition.

The NHS Clinical Knowledge Summaries are a source of reliable, evidence-based information and practical ‘know how’ about common conditions, aimed at healthcare professionals working in primary care, from GPs to pharmacists. The updating of the NHS CKS information on Fibro, as well as the NHS Direct website, means that healthcare professionals now have better information available on their own NHS information sources. The information can be printed out as a patient information leaflet from the CKS Library

FibroAction founder, Lindsey Middlemiss, a Fibro sufferer herself, said:

“I am delighted that NHS Direct responded so promptly to our calls for an update of their information on Fibro and that they carried out such a thorough review of the information, as well as making the updated information available on the NHS Clinical Knowledge Summaries.

This is an important step forward in our work to raise awareness of Fibro and make accurate, up-to-date information about the condition easily accessible. We are especially pleased and proud that the information we provide was considered worthy of reference on such a high profile publication.

There is a lot of information available about Fibro, but it can be hard for patients and healthcare professionals to keep up to date, which is why the updating of information sources such as NHS Direct’s website and the NHS Clinical Knowledge Summaries is so important.”

FibroAction will continue to work with NHS Direct, and other organisations, to make sure that the information available about Fibro is as good as possible.

For more information see www.fibroaction.org

ENDS

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If you are – or known of – a Fibro sufferer in London (UK), especially south-east London, who might be interested in getting involved with a new support project, please contact me via info@fibroaction.org.

ButYouDontLookSick.com – The daily online magazine for the Chronically Ill and disabled has managed to reach a milestone that so many websites fail to see. This month www.butyoudontlooksick.com celebrates its 5 year anniversary.

The site, founded by Christine Miserandino, offers tips, product reviews, articles and essays which have become invaluable to people with any chronic pain condition, or illness.

“I am so proud to be online for 5 years. I have seen my site grow more then I ever imagined. I always knew we could use technology as a tool for those of us with health issues to help each other and build a community.” says founder Christine Miserandino.

In recent years, ButYouDontLookSick.com has transformed from a personal web site to an international community and support network for the chronically ill as well as their loved ones. The site now features articles from several talented authors as well as a forum, chat room, “Get Well Gift Store”, and daily content delivered via newsfeed or e-mail newsletter.

ButYouDontLookSick.com is also the home of “The Spoon Theory”, a young woman’s explanation of what it feels like to live with Lupus. In her story, author Christine Miserandino wanted to explain how someone with a chronic illness makes choices everyday that a healthy person takes for granted. “I wanted something for her to actually hold. If I was in control of taking away the spoons, then she would know what it felt like to have something else, in this case Lupus, being in control.” says Christine. “The Spoon Theory” has been featured in many health newsletters, magazines and support groups. The story has touched so many of the ButYouDontLookSick.com readers that they affectionately refer to each other as “Spoonies”.

The message boards and chat room at ButYouDontLookSick.com have nearly 5000 active members. “It is very easy to feel isolated and uninformed when you are sick or stuck at home. I built this site to help people living with similar symptoms or experiences make connections.” says Christine Miserandino. With this much growth in the first 5 years we are excited to see what the future holds.

*Christine is available for interviews, quotes, or guest blogging.

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Ends press release