You have probably seen the Beta sign at the top of the website – what does this mean? Well, in short, it mean this website is a work in progress.

We are aware there are glitches, incomplete pages, links that don’t work, some accessibility issues… but instead of the backroom staff – that’s Beki, Freddie and myself and our wonderful developers, Tammie and Mason – deciding how we think you would like to use the site, we are really keen to hear how you are finding it so we can make the changes you want.

We introduced this new website as many of you asked for Shift.ms to include social networking features so you can add friends, receive notifications on posts that interest you and generally see what’s going on in the community. It took us a while to get here, but we’re delighted that we now have a new website to build from.

Since this new site went live last week, we have started to make some of the changes you have asked for including increasing the text size, trying to make the pages less cluttered and looking to make the site as easy to navigate as we can. Please keep your feedback coming! If there are any glitches you notice, or pages you find difficult to see or use, please let us know by replying to this article below or via the feedback tab on the right hand side of the page.

We are a small team with limited resources, but we want you to find this site awesome. It may take us time to make all the changes, but we will get there!

In other news, after returning from my travels a couple of weeks ago (read more about it here), I have joined Beki as the second Shift.ms employee. This is only my first week, but Shift.ms has a busy few months ahead with exciting projects lined up. More about this soon.

We really look forward to discussing with you ways we can improve Shift.ms. This is your community and we really want to help make it as useful a space as we can. Let us know what you want.

Thanks,

George

There is logic behind this as fish oil is thought to have anti inflammatory properties and obviously anything that combats inflammation is a bonus in MS.

Researchers from Norway have tried to apply a bit of science to the word of mouth claims by conducting a controlled clinical trial.

The trial involved 92 patients some of whom took fish oil, some of whom took a placebo. After six months interferon injections were also introduced into the mix for a further 18 months.

Neurological tests and brain scans taken from the two groups throughout the study period showed very little difference in disease activity between the two groups suggesting that fish oil wasn’t playing any kind of meaningful role in keeping MS at bay.

Despite the Omega 3 not showing itself to be as useful a tool in fighting MS as many patients thought it might have been; it still has positive health benefits. It helps with cholesterol levels and prevents heart disease and so in that way, it still has a role to play in the overall quest of dampening down MS by generally being as healthy as possible even if the specific benefits are less clear.

Read the full story on Reuters.

Once again it is the start of a new season. Last weekend was my first race of the year, the inaugural İznik Ultra Marathon. In fact it was two races in one day, the full tour of the lake – 126km and a 60km. Both a feast for the legs especially compounded by the rolling hills and high climbs of the first 60km.

Barely made it to the registration with Alain Wehbi who had arrived from Beiruth for the race. It was almost 11pm and we were both a little cranky. Especially when we realised that we were both missing mandatory pieces of equipment. Fortunately, the race organiser was at hand to help and we were able to register and get to bed in time to have a few hours of sleep.

İznik is a quaint and historical city, formerly known as the Greek City of Nicaea. Contemporary İznik is famous for its china, known by the city’s name. It is also rich with history and culture. A must-visit if you’re a visitor to Istanbul. It is an hour on the ferry and then a 40minute cab or minibus ride.

Before falling asleep, we strategized about the run. The forecast was for rain at about 2pm. Therefore we agreed to target 7 hours. The course profile looked manageable. As soon as we woke up we heard an unwelcome noise. We opened the curtains and discovered that it was raining. The rain had arrived sooner than forecasted and with force.

Fortunately, the rain eased off for the start and for most of the first half of the run. Despite the overcast skies, it was a beautiful run. The lake always in the foreground against the backdrop of snow capped peaks of Uludağ on the horizon. The path was mostly a trail or dirt village roads, rarely tarmac. Most of the runners were experiencing their first ultra distance but they were all very well prepared and greeting the event almost in a party atmosphere. The locals were well into it as well. Every village had a greeting committee of mostly children. Even the grannies were out wishing well to all the runners.

All was well and fun until the second climb. At the start of the second climb there is a main food station (the marathon checkpoint) at the village of Narlıca, then you head through the village roads on to the trail and no later than I stepped foot onto it the heavens opened up and did not stop till the finish. All the way through the climb I could not stop but wonder why I had left my poles in the hotel room. Once up top the way down was pretty straightforward.

It was hard, wet, and muddy but fun and I survived. It was also the start of the season. There will be more this year, Jordan only a fortnight away and the dreaded Ultra Trail du Mont Blanc (UTMB) a few months off.

It is also the launch of the charity season with the slight change. The cause is still MS, the charity shift.ms – a web-based charity for people affected by multiple sclerosis. Ozi, moved over to work for them, as a volunteer, managing their SEO (that’s Search Engine Optimisation for the new comers of social media and online advertising).

We do need support. We are aiming for £5,000 this year. We hope you will join us in achieving this goal. I am going to be doing two events for it; first a 250 km run in Jordan across Wadi Rum and Wadi Araba ending at Petra (I will have to download the Indianna Jones soundtrack for the finish) and then the dreaded UTMB: a 100 miler single day event around Mont Blanc. As a friend once described it, a run from London to Birmingham, (or Paris to Le Havre, or NYC to Hartford, insert as appropriate) with something a little higher than Everest to climb and descend in the middle.

I do accept per mile donations, as well. Though considering the distances I think you will be safer with a fixed rate. Please dig deep and give what you can, at: http://www.justgiving.com/DevrimCelal

Keep up with the posts.

A friend in need is a friend indeed – so the saying goes.

But sometimes that friend in need is, after a couple of days of moaning and whinging, a friend who actually needs a good kick up the backside to get them off the old self-pity train and back to the world of laughter and loving life. And I’ve always been quite happy to be that person who will don my size six boots and administer said kick when it’s time to. It’s tough love to help that friend who has slipped into ‘learned helplessness’ mode.

Now however, I’ve discovered that actually I need a friend to flex their soles and exert the boot because I have found myself slipping into ‘woe is me’ territory and yet I am struggling to find anyone to help me out of my plight.

What I need is someone, who knows me inside out, to give a firm talking to and pull me out of my misery. Someone who can give me some home truths and help me put some perspective on things.

Yet I am struggling to get anyone to recognise this is what I need.

My family and friends are happy to assume the hands-off role that I am ok with having this MS-thing and I’m coping ok. I can see each one of them has reached a conclusion that I am alright and that there’s no point going on about it. I can see why they are doing it – nobody wants to think of a loved one as suffering and talking about it only brings that ‘hidden issue’ back into the forefront of everyone’s minds.

Funny that, because it’s at the forefront of my mind 99% of the time. And no one wants to talk to me about it. No one wants to hear me rant and rave about how unfair it is. No one wants to listen to me moan and groan.

And more importantly no one wants to tie up the laces of the boot and give me a good thwack on the backside and issue me with the advice that it could be worse.

As well as the physical and mental toil my old friend MS has given me, I’ve now got to deal with the loneliness of having it too.

How do you cope with it? (Feel free to issue me with a nice firm kick because I could really do with it.)

What now?

• Leave your comments (or kicks) below
• Check out Sian’s blog
• Read some other fantastic articles by Sian: Tips to survive the MS revelation, Welcome to the guilt and Should I have a baby?

The other campaign I feel really passionate about is My MS Tips. We all know that when you are living with MS some of the best tips you can get about dealing with the condition come from other people with MS. Sure we get lots of good tips from our MS nurses and Neuros, but it is invaluable to hear from MSers who know MS inside out! So we are hoping to get lots of people filming themselves talking about their top tip for living with MS. This could be anything (as long as it is legal!) that you think other MSers would benefit from knowing.

We are also trying to get people to show some love for their MS Nurses, by nominating them for a “My Super Nurse” Award. So if you have a nurse that has gone the extra mile for you why not nominate her?

During the week itself we are also hoping that people will take part in be bold in blue fundraising events, by dressing up in blue and doing all kinds of things to raise awareness about MS. You can read more about the campaign here. Last year we had someone dress up as a smurf!

Personally I am hoping that we will raise lots of awareness on Twitter and Facebook. To get MS to be a trending topic on Twitter would be great, as we all know how hard it is to reach out to the general public and talk about MS. We’ve put together some facts about MS which can be easily tweeted, so if you are on Twitter why not try to raise some awareness online by tweeting our facts and using the tag #msweek. I think that if all of us posts facts and tweets a lot about it during the week, we should reach out to some new people who don’t know about MS!

What are you doing for MS Awareness week? And what are your best MS tips? Do let us know!

I don’t know…

How… to cook

What… the black smoke was in Lost

Why… MS is on the increase

Who… is sitting opposite me on the train at the moment

Where… my Blue Peter badge is

If… Forest will get promoted

But I DO know this:
vitamin D is important.

What now?

• Read our other I don’t knows
• Watch Ram’s vid about Vitamin D
• Tell Ram what the black smoke in Lost was in the comments below

I am disabled to the extent that I can not walk unaided, my balance is squiffy, I have foot drop plus a number of other MS related problems. I think it would be fair to say I’m now definitely not quite the man I once was.

At the beginning of February my website www.aid4disabled.com was born. Its aim is to provide information for people who are disabled but yearn for more independence and want to find a way to improve the quality of their life.

Just recently, I came across the following quote in an article on the BBC website:

“People with disabilities don’t need pity instead a better understanding would be a start.”

Often a person in a wheelchair will find it difficult to have a conversation with an able bodied person unless they are sitting in a chair. People prefer to converse with other people who are at the same height. There are so many people who do not understand that.

Last summer I was talking to a colleague and happened to mentioned an idea I’d been mulling over for the previous few weeks. He told me to buy the domain names and develop the ideas.

The aim of the website is to give disabled people quick and easy access to information that would help them become more self reliant, improve their quality of life and give them a way to share their knowledge and experience with others. Initially the website concentrates on MSers because I am a MSer.

The website was started on 1st February 2012, it is still a bit of a rough diamond but getting more polished with time. I want the website to give people with physical disabilities opportunities to improve the quality of their life.

There are so many young people whose lives are seriously affected by conditions such as multiple sclerosis, and it is important that our society, whenever possible, sees them in the same way it sees able-bodied people.

Items are designed to make life easier for disabled people, even so there is still so much that makes life difficult for them.

How many restaurants, or pubs still have steps to negotiate if you want to get to the loo? How many railway stations have steps between the platform and the street but no lift? Things are changing for the better but it is a slow process.

The website identifies information in the public domain that is essential reading and enables you to save significant amounts of money. It identifies household items that are not marketed as being suitable for the disabled but make their life so much easier. It can be used for blogging and to find out about useful products. In many cases I have ‘been there and done that’ and I hope my advice is helpful.

I’m also looking for articles from people who have something interesting to say about disabilities and how to overcome them. I stumbled upon so many things quite by chance the website is an opportunity to find out what is available.

I can talk about some of these items enthusiastically because I use them and they do make my life easier. Some are very functional others provide enjoyment.

You will be able to buy items through the website, leave comments or just rate how useful or otherwise you found them to be.

Even now I’m still surprised at how unbelievably simple some of the items are. For example something that takes the skin off a clove of garlic by rubbing it in a silicone tube is shown on the website. It ideal for someone who is cackhanded.

I’m very passionate about the website and what it is trying to do. I hope you will visit www.aid4disabled.com and by using it discover ways that help you maintain a greater degree of independence. Feel free to leave a message or to contact me.

What now?

• Leave your comments below
• Contact Patrick to ask your questions

I’ve clumsily dealt with:

1. Shock and denial

2. Pain and guilt

3. Anger and bargaining

4. Depression, reflection, loneliness

5. The upward turn

6. Reconstruction and working through

7. Acceptance and hope

It all sounds very therapy-like but it is exactly what I’ve been (and still occasionally find myself) dealing with to get my head around the fact that just as I live and breathe, so MS is part of me (despite my absolute hatred for it).

But I’ve now found that I have become… well to put it bluntly… a bit of an old bag when anyone close to me starts moaning that they’re not feeling very well.

Be it a few little sniffles to a full on bout of flu, I simply cannot find it in me to be all that sympathetic.

To be fair, even before my old friend MS made itself known to me, I kind of stood in the ‘tough love’ category of caring for my nearest and dearest when they were struck down with a bug. I was pretty good for a day or two, making the right sympathetic noises, making caring cups of tea and chicken soup and even resorted to forcing the patient to rest while I did everything. However this soft side of me never ever lasted longer than 48 hours and then I would start demanding they got up, had a wash and went for a walk to get some fresh air.

But now I simply cannot stand listening to anyone moaning they feel under the weather.

If someone starts blowing their nose noisily into a tissue, I feel disgusted by them.

If someone complains about having a headache, I throw some paracetamol at them.

If someone dares mention that they feel cold and shivery, I snap grouchily “Put a jumper on then!”

I’ve lost patience with the patients.

And it’s actually not a very nice thing.

All they want is some sympathetic words, someone to look after them for a few days, for the heating to be turned up… All I want is for them to go away and don’t come back until they have stopped whinging.

I just can stop myself from thinking: “YOU’VE NO IDEA WHAT FEELING ROUGH IS!”

I can’t bring myself to empathise with them because in truth I am jealous that all they’ve got is a cold. That all they’ve got is a temperature. That all they’ve got is a cough. And that in a few days or weeks time they will be completely well again.

Because this is all I want – to be completely well again. MS has other ideas.

What now?

• What do you think? Are you empathy-weary? Share your thoughts below
• Check out Sian’s brill blog
• Read another marvellous offering by Sian: Tips to survive the MS revelation

What now?

• Were you there? Let us know what you thought!
• Check out our other MS Research Day vids

I don’t know…

How… tall the tallest cat in the world is, when standing on its hind legs.

What… Yoda was thinking when he assigned Anakin to rank of Jedi Master (without granting him a place on the council!)

Why… I needed FOUR rashers of bacon in my sandwich this morning. I don’t feel too good now.

Who… is reading my inane mutterings but what’s the weather like where you are?

Where… I left my Thunderbirds Lady Penelope Fab-1 toy, when I about six but it’s something that still baffles me to this day.

If… any members of Shift.MS live in my area but i’m going to find out today and when i do i’m going to cycle to your house and say “hello”.

Anything… about plumbing.

But I DO know this:
everyone that has taken time to contribute and interact with Shift.MS is doing a pretty cool thing. Hope I get to know you all and get involved in any way I can.

What now?

• Read our other I don’t knows
• Tell Toby how the weather is, in the comments below
• Tell beki[at]shift.ms what you don’t know