The Big Sleep for ME is back!

The Big Sleep for ME is back for its third successive year.  With your help, and that of its business sponsor Vintage Wedding and Home, it’s going to be even bigger and better.  This fun and inclusive awareness and fundraising event for biomedical research, includes a mass sleepathon that runs throughout ME Awareness Week 11 – 17 May, as well as an opportunity to hold your own ‘sleep inspired’ event, such as PJ parties, PJ Pride Days, Sleepwalks, Sleep-cycles and more.

The Sleepathon is extremely easy and flexible to take part in and means that anyone, even those with severe ME, can do their bit.  All you need to do is lie back, make yourself comfortable, and, if you really want to, sleep!  Do it at home or anywhere that takes your fancy, either on your own or as a group.  And if you feel like it, dress up for the occasion.  If fundraising, just get people to sponsor you, and for awareness, just let others know you’re taking part.  The same applies if you’re holding your own ‘sleep inspired’ event.

The Big Sleep for ME likes to celebrate ME Awareness month in style, and will be getting in the party mood by running competitions and even having a Facebook disco.  Anyone is welcome to join in the competitions and disco, so keep an eye out for updates on Facebook and Twitter.  You can now also buy all sorts of fab Big Sleep merchandise in their online shop, from tops and sleepwear to their very popular Snugzie bear.  All purchases help to raise even more money for biomedical research as all shop profits are donated. There are also rumours that badges and balloons will be available shortly to make your Big Sleep really go with a swing!  It’s all happening at The Big Sleep for ME.

 It’s great to have such an inclusive event that means everyone, from sufferers to healthy supporters, can unite together to do something positive for ME.  The event is already shaping up nicely and participants have been coming up with lots of fun ways they’ll be taking part, such as a PJ coffee morning and The Princess and ME, a group of ME sufferers who will be dressing as princesses and turning into real-life Sleeping Beauties to coincide with ME Awareness Day.  So, why not join in the fun and do something for ME?  
 
The Big Sleep for ME was set up to fill the need for a completely inclusive ME event that anyone, including those with severe ME, could take part in.  Given the limitations severe ME imposes, a great deal of thought went into what kind of event could take place. In the end, the solution was so obvious.  Since, many with ME have to spend a lot of time lying down either on a sofa or in bed and some sufferers are completely bedbound, why not turn this into something positive and have a mass Sleepathon.  The Big Sleep for ME was born!  Whilst the event now encompasses all manner of ‘sleep inspired’ events and is about having fun, it also has a serious side which is to not only raise much needed awareness and fundraising for biomedical ME research, but also to increase awareness of ME generally.

Find out more about the event on their website.  The event also has its own Facebook page and is on Twitter, you can email them too.  To make things easier, the team has set up a group JustGiving page which you can join and there’s a downloadable Fundraising and Awareness pack and School Leaflet, should you wish to get a school involved, in their online toolkit.  You need to register to take part, but as thank you you’ll be entered into a Free Prize Draw. This helps them to keep track of everyone and plan for future years.

If you can’t take part, but would like to support the event you can always sponsor someone you know, or make a donation to The Big Sleep for ME fundraising group on JustGiving.

With special thanks to Julia Cottam from our ‘Let’s do it for ME’ team for thinking this up this event, and for all the hard work she puts into this inclusive and positive venture, as well as to everyone taking part.

We can all make a difference to ME!
 

Day 13: Advent Calendar for ME

‘Spice it up!’

Today, we spice up the tree by adding a delicious gingerbread man, made with cinnamon, ginger and many more scrummy ingredients.  Just like the one in Julia Cottam’s photo from the ‘Let’s Get Snapping for ME’ competition, the thirteenth photo to be magically transformed into our Advent Calendar.  But given he’s so tasty, how long will it be before he gets eaten?

 

You can download today’s advent image for your computer or mobile device wallpaper by clicking here. We have uploaded a number of versions in different sizes to suit various screen sizes. Each is labelled with an aspect ratio. (To find out the aspect ratio of your device divide the screen resolution width by height. We’ve made all images the biggest size possible to cater for the maximum number of devices. If the image is too large it can be easily shrunk to size. If your device’s aspect ratio doesn’t match those uploaded choose the nearest one.) If you’d rather print off today’s picture you can download it by clicking here.

Come back tomorrow for more festive fun and see what Day 14 has in store!

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Click here to order our fabulous Christmas cards, featuring winners from the 'Let's Get Snapping for ME' competition, and our beautiful 2014 calendar.

Click here to find out how you can raise funds for free for the charity whilst doing your Christmas shopping.

Advent Calendar for ME 2013

With December fast approaching, the ‘Let’s do it for ME!’ team have been busy working away behind the scenes to bring you a little festive magic by creating a fabulous online advent calendar. The idea came about after we were discussing that it would be really nice to do something Christmassy, as well as celebrate the high standard of entries in our recent ‘Let’s Get Snapping for ME’ photo competition. Thanks to Julia Cottam, our advent calendar brings this all together brilliantly!

Every day, between 1st and 25th December, a different photo will feature which will be magically transformed to form part of our advent scene below. We are going to post it on our blog, Facebook page and special Advent Calendar Event page so that as many people as possible can join in the fun. You are more than welcome to download the calendar to your computer or mobile device using it, for instance, as wallpaper (we will be uploading different sizes to cater for different screen sizes), or simply print off a PDF version. You can even just pop by each day to see the latest addition, or follow our blog where it will be delivered directly to you! And don’t forget to share it with friends and family too – the more the merrier.

Finally, because it’s not fair to keep you in suspense any longer, here's a sneaky peek at our fabulous advent scene by Liz Willsher, which will be magically transformed in the run up to Christmas.

With special thanks to Liz for the artwork and to all the entrants of ‘Let’s Get Snapping for ME’.

We hope you enjoy our festive offering. Let’s get Christmassy – let’s do it for ME!

Just a quick reminder, whilst doing your Christmas shopping online you can help raise funds for free for Invest in ME by using cash-back sites and a special Amazon link. You can also win £1000 worth of gifts for yourself and £250 for the charity by entering ‘Give as you Live’s’ competition. For details about the cash-back sites, Amazon link or competition click here.

My A-Z of M.E. Book of Poems by Ros Lemarchand

My A-Z of M.E. is a book of 50 poems about experiences of living with myalgic encephalomyelitis, written by Ros Lemarchand. The book is dedicated to all those living with a chronic illness and a percentage of the proceeds will be donated to Invest in ME.

"It is really good to hear Ros decided to publish her poems. They are so good and to the point. The foreword is very good too as a short explanation of what ME is. People get a good idea of ME by reading this book. Many thanks Ros, and all others involved."

Many people on Facebook will know Ros from the information and support she provides and where she has been sharing her poems over a number of years.  

Her poems on the subject of sleep were featured throughout May 2013 M.E. Awareness Week for The Big Sleep for ME annual event, run by Julia Cottam in aid of Invest in ME. Julia gave Ros the encouragement, help and support to publish her work.

The book is available in paperback and for Kindle on Amazon - links below. If you don't have a Kindle, the Kindle app can be downloaded for free onto computers.

Ros said, "I am pleased at last to be able to share all my poems about M.E. in one book. I have been working on this slowly over the last year or so and at last it has come to fruition. I hope you will buy my book so as to raise more awareness and understanding about this very difficult illness. At the same time you will be helping Invest in ME. as a percentage of the sales will be going to that charity. I hope you enjoy my poems and you feel that you can empathise with them. Perhaps you might like to share them with friends and family so that they can have a better understanding of how it feels to live with M.E. Although my poems are primarily written with M.E. in mind, some of them may also just as well apply to other chronic and invisible illnesses."

In the introduction to her book, Ros writes:

I first became ill in 2002 and at the time I didn't know what was wrong with me. It felt like the worst flu ever but it didn't go away.  
I tried courageously many times to carry on working until I completely collapsed. My doctor at the time hadn`t got a clue. So I changed doctors, was sent for lots of tests and by a process of elimination I was told in 2003 that I had Chronic Fatigue Syndrome. 

Although it was a relief to have a name to my illness I knew nothing about it. So I read as much as I could in order to learn more. I soon discovered the more appropriate name was Myalgic Encephalomyelitis and I prefer to use that at all times. Chronic Fatigue Syndrome just sounds like I'm a bit tired and it's so much more than that.

Since my diagnosis I have struggled with this very difficult and invisible illness. I have faced disbelief and ignorance from family, friends, doctors and many others. I still do to this day. Many people with M.E. or other chronic and invisible illnesses share the same experiences.

I had to stop working and consider my health. I was suffering on many fronts and was only getting worse not better. It was a hard decision to make. So my life has had to change. 

At times it's made me feel angry, frustrated or even depressed. I have gone through a grieving process. I've lost that person I once used to be. I've lost the life I once had. I have been forced to change, adapt and learn ways of coping with a chronic illness. As M.E. is a remitting and relapsing illness I've had good periods and some really bad ones. It's an illness forever changing and new symptoms developing all the time. 

With little or no support from the medical profession I've had to learn about this illness and how best to manage it myself. Over the years I have probably become a self expert. Yet even now this illness can still take me by surprise.

Fortunately I have found help and support from others like myself on social networking sites and other internet forums. Without this support I don't know how I would have survived. It's comforting and reassuring to know that I am not facing this alone.  I have observed others expressing the same feelings, emotions, experiences and problems as myself.  This has given me the source for many of my poems.  

Through my poems I want to show the reality of a life with M.E. and to increase understanding and awareness. And that's why a percentage of this book will go to the UK Charity Invest in ME. (IiME) who do so much for the cause of M.E. in raising awareness and understanding.

Thank you

Ros LeMarchand

My A-Z of M.E. is available in paperback here on Amazon.co.uk 
Kindle version is here on Amazon.com or Amazon.co.uk
Buying from Amazon via easyfundraising has the bonus of an extra donation to Invest in ME at no extra cost to the buyer - easyfundraising is very easy to register with and to use - a great way to raise extra funds for free: click here. 

A big thank you Ros!

My A-Zof M.E. on Facebook

The Big Sleep for M.E. is back for 2013!

Following the great success of last year’s event, The Big Sleep for M.E. is back for 2013. And this year with your help, it’s going to be even bigger and better! This fun and inclusive awareness and fundraising event for the UK Centre of Excellence for ME, includes a mass sleepathon that runs throughout ME Awareness Week 6 – May, as well as an opportunity to hold your own ‘sleep inspired’ event, such as PJ parties, PJ Pride Days and Sleepwalks, Sleep-cycles and more, so that even more people can get involved.

The ‘Sleepathon’ is extremely easy and flexible to take part in and means that anyone, even those with severe ME, can do their bit. All you need to do is lie back, make yourself comfortable, and, if you really want to, sleep! Do it at home or anywhere that takes your fancy, either on your own or as a group. And if you feel like it, dress up for the occasion. If fundraising, just get people to sponsor you, and for awareness, just let others know you’re taking part. The same applies if you are holding your own ‘sleep inspired’ event.

Whilst the Sleepathon takes part during ME Awareness week this doesn’t mean you can’t have your own sleepathon or ‘sleep inspired’ event at other times of the year. We need to keep up the pace if we’re going to beat ME!

The Big Sleep for ME has expanded massively since last year, and to get in the party mood it will be running a number of competitions and special events, including ones for children. There’s even a special Kids’ Den webpage for children with activities and competitions. It’s a fun way for them to get involved and keep them busy.

The event now also has its own online shop where you can buy Big Sleep merchandise such as sleepwear, tops and, the very popular Big Sleep Bear, that comes complete with his very own nightcap. For those on a budget, there are free stickers and transfer downloads.

The Big Sleep for ME was set up to fill the need for a completely inclusive ME event that anyone, including those with severe ME, could take part in. Given the limitations severe ME imposes, a great deal of thought went into what kind of event could take place. In the end, the solution was so obvious. Since, many with ME have to spend a lot of time lying down either on a sofa or in bed and some sufferers are completely bedbound, why not turn this into something positive and have a mass sleepathon. The Big Sleep for ME was born! Whilst the event now encompasses all manner of ‘sleep inspired’ events and is about having fun, it also has a serious side which is to not only raise much needed awareness and fundraising for the Centre, but also to increase awareness of ME generally.

There are so many ways to get involved and the fantastic thing about The Big Sleep for ME is that everyone, from sufferers to healthy supporters, can unite together to do something positive for ME.

If you want to find out more, the event’s website is a good place to start. The event also has its own Facebook page and is on Twitter, you can also email them. If you fancy taking part, the team has set up a group JustGiving page which you can join to make it even easier for you, and there are extensive online tools and information to help as well. You need to register to take part, but as thank you, you’ll be entered into a Free Prize Draw. The team have introduced this to keep track of everyone and plan for future years.

If you can’t take part, but would like to support the event you can always sponsor someone you know, or make a donation to The Big Sleep for ME fundraising group via its JustGiving page or by texting BSME99 to 70070 with the amount you would like to give (for example BSME99 £5 to 70070).

With special thanks to Julia Cottam from our ‘Let’s do it for ME’ team for thinking this up, and for all the hard work she’s put into developing and launching this inclusive and positive venture, as well as to everyone taking part.

We can all make a difference to ME!

‘Let’s Get Snapping for ME!’ 2012 Christmas Cards Photo Competition Winners Announced!

The ‘Let’s do it for ME’ team came up with the idea of the ‘Let’s Get Snapping for ME!’ as we were discussing plans for producing our Christmas cards for this year. We wanted to go that extra mile and make them a little bit special and more relevant to ME than just buying in stock images. So we decided that it would be a really good idea to run this competition whereby LDIFME supporters could make a contribution by sending in photos and have winning entries printed on our cards. We realised that this would be a great opportunity for ME sufferers in particular, whose talent often remains behind closed doors, to have the chance to be acknowledged and celebrated. There couldn’t be more powerful and positive ME awareness whilst raising money for vital biomedical research.

The response to this competition has been simply amazing! 180 photos were entered and a staggering 2351 votes cast in our online poll; we couldn’t have asked or wished for more. The great success of the ‘Let’s Get Snapping for ME’ simply wouldn’t have been possible without your support and we would like to say a very big thank to everyone who got involved, including those who sent in and posted up messages of support and thanks. This means a great deal to us and makes all the hard work that the team, most of whom have ME ourselves, has put in behind the scenes worth it.  Special thanks go to Julia Cottam for her hard work on planning and coordinating the competition.

 

The standard of entries was particularly high and went way beyond our expectations. We did say this was an opportunity to shine, and you certainly did just that!  This obviously created its own challenges in that the team had the very difficult task of selecting those for the online vote; and again for those casting votes in the second stage online vote. Many online voters remarked, ‘how could they choose between them, when they’re all so good?’ The online vote was however successful in determining the top five photos that attracted the most votes.

Each winner will have their photos printed up on our 2012 Christmas cards and receive free packs featuring their photo.  The cards will be sold to help raise funds towards our £100K campaign target (see page tabs and leaflet for details). We aim to have these available to purchase in early November. For those shortlisted entrants who missed out in our online vote, don’t be disappointed. The team has been coming up with lots of ideas. We hope to be able extend the number printed and possibly branch out into other products too. An announcement will be made shortly, so keep an eye out for updates!

Given the success of the competition, we aim to run this again next year. For those that have never entered a photo competition before don’t be put off entering, the majority of those who entered this year’s had never done anything like this before and just look at the results! We hope this inspires you in the coming months to dust off your cameras. Here’s to an even bigger and better Let’s Get Snapping for ME! in 2013.  Let’s do it for ME!

This is the moment you’ve all been waiting for, so without further ado, Let’s do it for ME can proudly announce the five winners of our ‘Let’s Snapping for ME! 2012 Photo Competition.

Congratulations and well done!

Suzanne Hudson 'Winter Landscape' - 375 votes

Claire De Marinis 'Bailey' - 300 votes

Kate Stanforth 'Icicles' - 149 votes

Danielle Lee 'Toby' - 142 votes

Kelsey Palmer 'Star' - 142 votes 

The Big Sleep for M.E. has arrived!

The Big Sleep for M.E. has arrived - so start plumping those pillows now!

Start: 6/5/12 00:00:01 Finish: 12/5/12 23:59:59

The Big Sleep for M.E. was Julia Cottam’s idea to create a fun, easy and inclusive event to raise awareness and money for the UK Centre of Excellence for ME that would coincide with ME Awareness Week.

The event is extremely flexible. All you need to do is lie back, make yourself comfortable, and if you really want to - sleep; a sort of mass sleepathon. Anyone, anywhere can take part. You can take part for just a day or the whole week if you like. Why not wear some silly sleepwear or an outrageous nightcap, as Julia’s proudly modeling, to make it even more fun! Anything goes - from your everyday comfy PJs to something more ridiculous. It's entirely up to you. And because this event is about fundraising and awareness you can do either or both. There are even group fundraising pages set up to make it even easier.

The Big Sleep for M.E. was thought up to take into account the fact that the illness restricts many sufferers to spending a lot of time lying down and in bed - some are totally bedbound; with the idea to turn this into something positive for our cause. The wonderful thing about this event is that for those ‘willing wellies’, healthy supporters, out there you’ve never had a better excuse to put your feet up and have a lie down knowing it’s all for a good cause! Those that are bedbound through this illness can also join in the fun for a change!

The response to this event has been very positive. As one ME sufferer said, ‘…. finally an event that I don't have to say no to!’ It has particularly struck a chord with those that are severe. And there are several severe sufferers fundraising either individually http://www.justgiving.com/thecagedbird or on The Big Sleep for M.E. JustGiving group page

http://www.justgiving.com/thebigsleepforme with more taking part for just awareness.

There have also been some unexpected and delightful deviations to the event with pets now joining up. Bubble and Squeak, two eighteen year old cats, have their own fundraising page http://www.justgiving.com/Squeak-and-Bubble-Cats, and the tortoises Hector and Hamish are helping out Ruth Gilchrist on her page http://www.justgiving.com/Ruth-Gilchrist. Kaiser Bill and Thomas are now team members of The Big Sleep for ME group fundraising page http://www.justgiving.com/thebigsleepforme. Kaiser Bill being the feline representative and Thomas the canine; although if they actually met in up in real life there could be some diplomatic differences.

There are also sleepover parties taking place in aid of The Big Sleep.

As you can see there are so many ways to join in. And the wonderful thing about this event is that healthy supporters and sufferers can all come together to do something positive for M.E. So far there are people from all over the UK, America, Italy and Sweden that have signed up.

If you’re interested to find out more go to the website www.thebigsleepforme.com or visit the Facebook page www.facebook/TheBigSleepforME, or email thebigsleepforme@btinternet.com.

If you’re unable to take part but would like to show your support you can give a donation either by going to the JustGiving pages mentioned or by texting BSME99 to 70070 with the amount you would like to give (for example BSME99 £5 to 70070).

With thanks to Julia for all her hard work developing and launching this inclusive and positive venture and to everyone taking part. We can all make a difference to M.E!

Julia Cottam's card launch - raising money for Let's Do it for ME

Julia Cottam's botanical greeting cards are now ready to buy! For every card sold, 50p is donated to Invest in ME's campaign 

'Let's do it for ME'. 

All cards are blank for your own message and professionally printed on top quality card. Sets of 6/12 make a lovely gift! The perfect card or gift for Mother's Day on the 18 March! 

Follow this link to go directly to see all 12 cards, pricing and ordering information... 

http://www.facebook.com/media/set/?set=a.245675472171848.58172.245669688839093&type=3

Order yours today!