D I S C O

 

 

It’s time to get down and strut your virtual funky stuff at The Big Sleep for ME Disco, which celebrates the end of ME Awareness Week and their Sleepathon. This extremely popular event aims to recreate a disco in the comfort of your home. You can dress up or dress down – it’s entirely up to you.

With the virtual club booked and the bar well stocked, you’re all set for a great night. And because all drinks are on the house you can indulge your passion for the finest champagne or, if feeling a little more adventurous, experiment with the latest cocktails.

The Big Sleep Team, who always think of everything, have even laid on transport for the night. However, if you have your own lined up, that’s fine: just make sure you arrive in plenty of time because you don’t want to miss out on any of the fun!

DJ Ros will be spinning the discs, and we hear that there are some great bands and singers lined up for the night. No expense has been spared. 

So join in, for what promises to be, a great night.

With special thanks to A Better ME Facebook Group and Ros Lemarchand for their help with this event.

How it works: The disco takes place on A Better ME Facebook Group, where Ros will post up YouTube videos of various artists, although you’re more than welcome to join in. You must be a member of A Better ME. If you aren’t, please hop over there and request to join the group. This is best done in advance of the disco as admins will be busy on the night. 

Competitions Galore!!

It’s May, it’s ME Awareness month and it’s time to celebrate! The Big Sleep for ME, a fundraising and awareness event in aid of Invest in ME, are getting in the party mood. They’ve lined up a whole load of fab competitions which you can take part in throughout the month. There are some great prizes to be won, including their very popular Snugzie bear, a signed copy of Ros Lemarchand’s book of poems, ‘My A – Z of ME Myalgic Encephalomyelitis’, and a chance to have your own artwork feature on their merchandise. They even have a competition especially for children.

Their prize draw to win a bear is very easy to enter. All you have to do is simply register to take part here and you’ll be automatically put into the draw. You must register by 10th May to qualify. The draw will take place on 11th and the winner will be announced to tie in with the first day of ME Awareness Week and their Sleepathon. If you’re taking part in the event, you can also get your hands on one of their bears by just submitting photos to them of you taking part. They will award bears to those they consider have sent the best in. 

The Where’s Bear? Competition looks great fun! Snugzie will be off travelling from 11 – 17 May, to coincide with ME Awareness Week and the Sleepathon, all you have to do is say where he is. There’s a bear up for grabs each day, so there are plenty of opportunities to get your mitts on one!  This is how it works; each day a picture will be posted up of Snugzie on ‘location’ on their website homepage, Facebook Event’s page and tweeted via Twitter. You then submit your answer of where you think he is by email, commenting under the picture on Facebook or replying to the tweet on Twitter. All the correct answers will be put into a draw and the winner will be announced the next day. We understand from inside information that he certainly gets around! There’s no stopping that adventurous little bear!

With the next two competitions, it’s time to get creative. First up, for those budding poets out there, is the Poetry Competition. This competition is inspired by the popularity of Ros Lemarchand’s poems posted during last year’s Big Sleep. Not only does the winner get a signed copy of Ros’s book of poems, ‘My A – Z of ME’, but it’s also a chance to shine because the winning poem will be shared on Facebook, tweeted and have its own dedicated blog post. Big Sleep HQ has said that if there are a number of very good entries the number of winners will be extended. It has even been mooted; they might put together a book of the best ones. Your poem could be in print! How amazing is that?!

The competition is open to anyone, but the poems must relate to ME. Just email your poems to info@thebigsleepforme.com, post them up on their Facebook Event page or even tweet them to The Big Sleep for ME. Each entrant is allowed to submit up to 3 poems and the deadline for entry is 31st May, the winner(s) will be announced on 28th June.

The T shirt Design Competition is equally exciting. For those with an artistic bent, just submit a design/s to feature on their T shirts and other merchandise. The design brief is pretty wide; it just needs to relate either to the event, ME or both. Be as inventive and creative as you like! The winning design will not only feature on their merchandise in their shops, but the winner will get to wear it as well! Since The Big Sleep is giving away an item of clothing of the winner’s choosing with their design on. How fab is that?

The artwork must be your own , be submitted in digital format and emailed to them. For drawings and paintings just scan and send them, if you’re more into graphics and editing that’s fine. But again, it must be your own work: any elements contained which are not your own must not be subject to copyright. You are allowed to submit up to 3 designs in the following formats; JPEG, PNG, GIF, TIFF, PDF, AI, EPS. The image must be good quality and be at least 300dpi. Large files need to be zipped so they can receive them. The entry deadline is 31st May and the winner will be announced on 28th June. 

The Big Sleep for ME likes to be as inclusive as possible, so they’ve also got a competition especially for children. The Bear Detective Competition is a fun way for children to engage with ME. All they have to do is help Big Sleep HQ find the suspicious Big Sleep Bear by letting them know where he is and what disguise he’s wearing. He’s hiding somewhere on their website. Answers can be submitted here. Only children 11 and under can enter, with only one entry allowed per child. All children must have parental consent to enter. Deadline for entry is 16th May. All correct answers will be put into a draw and the winner will be announced on 17th, which ties in with the end of ME Awareness Week and the Sleepathon.

But that’s not it! They’re also having a Facebook disco which will be announced shortly and Ros, The Big Sleep Bard, is back for 2014 with more of her great poems. It’s all happening at The Big Sleep for ME!  

If you want to find out more about the competitions or are interested in taking part go to their website. You can email or tweet them too.

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!
 

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!

Walk for ME!

The Walk for ME website is now up and looking great! 

This simple but brilliant idea was created by Luke Remnant, with lots of help from Sarah-Louise, Ian, Tracey and Kelsey ....

The aim is to raise ME/CFS awareness as well as funds for charities focused on biomedical research into the causes of ME/CFS. Walk for ME 2013 is supporting two charities - Invest in ME and ME Research UK - you choose which one to support when you create your JustGiving page - then you can join your page to the Walk for ME Team.  No prizes for guessing that we at Let's do it for ME hope that you will join Tanya, Lesley, Lianne, and Rory the Dog (on behalf of Tony) and others in choosing to support Invest in ME on JustGiving for Walk for ME 2013 - or, like Luke, you can support both charities through this event by creating two JustGiving pages - one for each - and join both your pages to the Walk for ME Team. 

The idea behind Walk for ME is that friends, family and loved ones of an ME sufferer do a sponsored walk on their behalf: hence the name Walk for ME or Walk for me. It is hoped that as many friends and loved ones as possible will do a sponsored walk during ME Awareness Week which runs from 6th May to 12th May 2013. 

The Walk for ME Team hope this will be a fun but poignant event. Family and friends can choose to walk any distance they choose; it could be 1 mile, 5 miles, or 10 miles or whatever feels appropriate. The whole idea is that the friend or family member is doing something that their loved one would love to be able to do but can’t. We really hope that by doing this on their behalf and raising sponsorship money it will help raise awareness of this debilitating illness.

People with ME often have friends and loved ones saying they feel helpless and they wish there was more they could do to help. This is their chance!  If walking is not up their street, they can of course find lots of other easy and fun ways to help raise ME awareness and funds by visiting Let's do it for ME! 

A big thank you to the Walk for ME Team.  To find out more including details of how to get involved in this event and join the ever growing team please visit the brilliant Walk website ..

Walk for ME

Walk for Me event page on Facebook.

http://walkforme.co.uk/

*Let's do it for ME is a campaign run by ME patients and parents/carers in support of Invest in ME's proposal to establish the first UK centre of excellence combining a clear strategy for high quality biomedical ME research with patient care, aimed at developing appropriate medical treatment/s for ME as rapidly as possible.   Established in 2006, Invest in ME is a small charity and is run entirely by volunteers - ME sufferers or parents/carers.  With its focus on promoting and facilitating biomedical ME research to increase understanding and proper recognition and treatment of this disease, Invest in ME  is making a big difference to the lives of people with ME and giving realistic hope for the future.  All funds raised by the Let's do it for ME campaign go to Invest in ME's biomedical research fund towards high quality biomedical ME research*

Post by Kerryn Besbeech Groves ..
"Hi everyone! Do any of you live in East/West Sussex? My sister will be taken part in "walk for ME" for me and we'd like to make more of an event of it. Hopefully get other walkers/families involved. We're planning on setting the route as a circuit around Tilgate Park lake, in Crawley, as sufferers and family members can all set up together and give support for the walkers. The date isn't decided yet, but it will be around ME awareness day/week."   

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!