FibroAction – A new national UK Charity for Fibromyalgia

As some of you may know my wife has a chronic condition called Fibromyalgia.  She has had it for about 6 years and spent much of the first 5 of those in serious pain, amongst other symptoms.  Part of the reason she suffered for so long is that there is a distinct lack of awareness of the condition in the UK.  To the point where many GPs do not even believe it exists.

However, she eventually managed to find the information and support needed to get her Fibro under control. And is now in the position of being much improved and being able to work and so has chosen to work to improve conditions so that other people do not need to suffer unnecessarily as she did.

Fibro awareness in the UK desperately needs to be brought into the 21st century and to this end she is now heading a new national charity called FibroAction.  With the help of other Fibro sufferers and carers, including myself, the charity hopes to

[E]ducate people about Fibromyalgia Syndrome (Fibro), including people with Fibro, their family, friends and carers, healthcare professionals and the public at large, as well as providing support to patients.

With a long term vision that

[T]he needs of people with Fibro are universally recognised and met, with fast and accurate diagnoses and easy access to optimal treatment programs available to all people with Fibro.

To most GPs and patients, the diagnosis of Fibromyalgia is the end of the care pathway.  There is a widespread belief that there is no treatment for Fibro and that nothing can be done to help sufferers and that the outlook is bleak.  This is patently false.  Currently there are 2 FDA approved drugs for Fibro, Lyrica (Pregabalin) and Cymbalta (Duloxetine), plus many more that are being used off label, including Mirapexin (Pramipexole) that have had promising results in double-blind trials. 

Fibro has such wide ranging symptoms that it is important to eliminate all co-morbid conditions before starting to treat Fibro pharmacologically and there are also other ways of helping Fibro that form part of a multi-disciplinary approach to treatment.  Myofascial tension can be a major cause of pain in Fibro sufferers that, whilst isn’t a direct symptom of Fibro, can be greatly amplified by it.  Seeing a massage therapist or myofascial release specialist can help relieve this pain.  Managing stress is also important – stress isn’t good for anyone, especially if you have health issues – and when you have a condition related to changes in the brain and nervous system like Fibro is, stress can quickly worsen symptoms. Problems with anxiety and depression, possibly caused by having such a debilitating condition, can also make dealing with symptoms a lot harder.

Amongst the existing organisations in this country that do deal with Fibromyalgia there is a misconception that there is little research being undertaken.  However this is not true. There is a huge amount of research being undertaken.  In fact at the recent EULAR (European League against Rheumatism) annual European congress there were over 90 abstracts from research papers submitted that dealt with Fibromyalgia Syndrome.

So anyway.  If you have Fibro there is now some hope and an organisation that is out for your best interests.  If you’ve got any questions we are always ready to answer them so ping us an email.

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My blog has moved

Hi,

My blog has moved to blogs.msdn.com/psiman

you can email me at simon dot middlemiss at microsoft dot com

Cheers

Simon

DDD 5 : Call For Speakers

Developer developer developer is a community driven “un-conference” that is hosted at the Microsoft Campus in Reading.  It’s an informal opportunity for developers to learn, share & interact with each other in a relaxed environment. 

Whilst Microsoft UK provide the venue, logistical support and also lay on lunch, there is a guarantee that no Microsoft speakers will be presenting.  This leaves the door open for the UK .NET community to choose what they want to hear and who they want to hear it from.  Head on over to the Developer Day website and check out the currently proposed sessions and if you don’t like the sound of those why not submit your own proposal?

The last two events, DDD4 & WebDD, were so good that it will be very hard to better them. I’d love to be proved wrong and given the amount of effort the organisers put in I won’t be surprised if I am!

If you’ve never been before and you want to know a little about them there are recorded sessions, copious amounts of feedback and lots of reviews on the web.  You can check out my thoughts on the last 2 events here and here.

One more thing, there is a tradition that after an event of this type, those that want to, head out into Reading town center for a ‘geek dinner’.  They are great opportunity to meet more of your peers as well as talk to the organisers and some of the Microsoft staff that help out on the day.

It really is a worthwhile and enjoyable day so make sure you keep Saturday, June 30th free!

As a final note I always point people to this which explains what it’s all about in a language we all (hopefully) understand.

Expression of Feedback

Soma Segar announced earlier today that the Web and Blend tools from the Microsoft Expression Suite are going to be included in the Premium MSDN subscription content.

This is a bit of a coup for the .NET community who expressed considerable feedback on the subject.  I personally know a lot people will be very happy at the decision.

It’s yet another example of Microsoft listening to community voices with regard to toolsets.  A similar decision was made around Team Foundation Server early last year following customer feedback which resulted in the Workgroup Edition of the software lifecycle tool being included in MSDN subscriptions.

Posted in IT. 16 Comments »

À bientôt

I mentioned in a recent post that I was going to take a break from blogging for a few weeks and that I’d explain why later.  Well later has arrived.

As of Monday 26th March 2007 I became and FTE (full time employee) at Microsoft UK.  I am working as part of Microsoft Consulting Services as a consultant; hopefully on lots of cool WPF projects.  I had refrained from blogging about it thus far so I could get the lay of the land regarding Microsoft’s policies on the subject.  Having done so I am now officially back!

The content shouldn’t change, but unfortunately the location will.  I’ll now be resident at blogs.msdn.com/psiman, sharing space with a lot of very good people.  Whether this adds or detracts from my credibility is for you to decide, but given how much I constantly rave about WPF, .NET and Microsoft in general, I am uncertain if my opinions could be much more biased as it is!

I am going to cross post things for a while and I may well repost some of my better stuff there too.  Also topics that are specific to Cowes Week may well get posted here in the future, although that isn’t certain.

See you at the new place!

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Expresion Blend RC1

The RC1 release of Expression Blend is available here!

The download is a lot bigger than before (~25MB rather than ~10MB) which I assume is taken up by ‘Sample Pack 1′ which ships with this release.

Checkout these screen shots!

Posted in IT. 2 Comments »

International Women’s Day

Today is International Women’s Day, so this is one of the few occasions I’ll fill these hallowed pages with non-technical content.

If they aren’t already, add the following to your blog roll.

Feministe
Feministing
I Blame The Patriarchy
Litbrit
Majikthise
Pandagon
Shakespeare’s Sister

And just so I can keep this post vaguely on topic as well, Sarah Blow posted this on Tuesday.

An English professor wrote on the board: A woman without her man is nothing.

The class was then asked to punctuate the sentence.

The men wrote: “A woman, without her man, is nothing.”
The women wrote: “A woman: without her, man is nothing.”

As this is almost certainly apocryphal I’ve modified it slightly from what Sarah posted.  This version removes the assumption that the professor must be a man.

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