15 May 2014

IiME/UCL Rituximab Trial - News May 2014

Click here to read on IiME website - IiME/UCL Rituximab Trial - News May 2014

The Invest in ME/UCL Rituximab Clinical TrialResearch Fund
Invest in ME are pleased to announce that our research fund total has now reached £300,000.
May 2014
This has been an incredible endeavour achieved by Invest in ME's supporters.
It may be useful to go through some of the events which placed us in this current situation -
  • The charity stated at our 2012 international conference in London that we wished to initiate a clinical trial of the rituximab drug for ME.
  • We contacted many academic institutions and made our commitment known and invited researchers to the Biomedical Research into ME Colloquium (BRMEC3) in May 2013, organised by Invest in ME, in order to encourage requests to perform this work.
    At the colloquium Dr Jo Cambridge from UCL was invited by the charity to attend and present her research to the 40 researchers from nine countries who had gathered in London for the meeting. We felt it important to get the best advice possible to help with this area of ME research. Dr Cambridge added an enormous amount to the meeting – followed by a sincere and positive approach to progressing research.
  • The following day Professor Jonathan Edwards of UCL attended the 8th Invest in ME International ME Conference. Professor Edwards agreed to become our advisor and issued this statement regarding the project 
  • Early on the charity welcomed support from everyone. We invited everyone to get behind this UK rituximab study and support us. We welcomed contributions from other organisations and companies and individuals. We stated that those who felt they needed to review our proposal further may then organise their own peer review process as they deemed necessary. 
    Several organisations have supported us and some have contributed funds - see our supporters page  
     
    We have always made it clear that the charity is interested in the quickest, the best and the most efficient and cost-effective way to make progress. This need for high-quality biomedical research into ME is long overdue and the need is urgent, and it is personal. We have agreed with our advisors that any organisation wishing to support the trial will come to IiME and IiME will provide necessary information. We have agreed to providing information to any organisation supporting us at regular intervals. So it is a simple matter for any organisation or individual who wishes to support this trial can contact IiME (see below).
  • IiME set up the innovative MATRIX - to generate more campaigns for funding a trial 
  • The dedicated web site was created for this trial - www.ukrituximabtrial.org
  • Frequently Asked Questions (FAQs) have been set up to answer questions  
  • Posters were created to publicise the venture by IiME and UCL 
  • A summary document was produced for the trial 

  • We announced that IiME had been given a pledge of £200,000 from a foundation to supplement the amount we have raised already. This generous act astounded all of us. In March we were happy to be given permission to announce that the donation was made in memory of the late Roger Hendrie who sadly passed away in March 2013.
    The foundation had two conditions to this pledge
    • That IiME continue to be the lead patient organisation steering this trial
    • That IiME continue to raise funds for the remaining funds required for the full trial to proceed

    The trustees of IiME have accepted these conditions willingly.
    We are thankful and grateful for this extraordinarily generous offer from the donating foundation. It is an amazing gesture from compassionate and caring people who want to make a difference. It allows the hopes of many patients to become a reality – allows a vision to be maintained that there is a future for ME patients and that we, patients and families, can make a difference.

  • The charity has continued to have meetings with the UCL team during the course of the last nine months.
  • The preliminary trial was set up and was peer reviewed by the charity's international reviewers 
  • The study has passed the ethical approval stage recently and the internal UCL approval stage.
  • IiME are signing a contract shortly for this.

    What Next?
    Thanks to an amazing effort across many countries by patients, carers, relatives and friends - and from who were previously unconnected to our cause but are now good friends - the Biomedical Research Fund for the IiME/UCL UK rituximab clinical trial has now reached £300,000.

    We continue our efforts to raise the remaining funds.
    To our supporters who have been with us since the beginning and everyone who has contributed in so many ways to this trial we want you to know this is your result. It is what you have achieved. It is what we have achieved together.
    We thank all those who are supporting this trial and we will continue to provide information on the status of the trial as we progress.
    We continue to welcome support. Please contact IiME directly if you or your organisation would like to support us. 
    If anyone would like to ask any questions about the UK rituximab trial then please use the Contact form on the rituximab web site - click here.
    Our team, our advisors and an international group of biomedical researchers will be at the Invest in ME Biomedical Research into ME Colloquium in London in May 2014.
    We need to continue to raise funding for this study so we urge all our supporters, and others who wish to have a UK rituximab trial or wish to advance biomedical research into ME, to continue to raise awareness and interest from as many sources as possible and support us in this venture.

    The UK rituximab study has been initiated by IiME and UCL.
    The preliminary B-cell study will commence shortly.
    The best research team possible to undertake this trial is able to perform this.
    We need now simply to fund this.



    Let’s Do Research! Let’s Do It For ME!

     

    Click here to see/download our posters for the IIME/UCL rituximab trial.
     

 

11 May 2014

A Dream, A Wish, A Hope

 *peers in nervously ...*
*clears throat*
 
The Caged Bird
ME Awareness May 2014 



Okay ... so, obviously, I'm the Caged Bird and ... well, this is what I've done for ME Awareness Day/Week/Month (and beyond!).
Basically, while I'm rather shy these days (and somewhat poorlier than I used to be many moons ago, having always been mod/severe but progressively worse with it since the start), I have pushed to painstakingly make this video over a period of time for a JustGiving page to try and raise more funds for the amazing peeps at Invest in ME.
So, without further ado, I present ...
A Dream, A Wish, A Hope

 

 Formally, this video was Unlisted, meaning it was only available via direct link to the video itself. After several months and a response I never expected, it is now available to the public via Let's Do It For ME's YouTube channel, in the hope of raising even more desperately needed funds for Invest in ME! 

(With the end bit regarding me freaking out chopped off, obviously .. though, believe me, my hair is not grey for no reason!)

*bites non-existent nails 'cause TCB can't grow them!*

The link to my page is here:

 http://www.justgiving.com/CagedBird

So, please, do help if you can! I've met my target and then some already, as people have been so wonderfully generous thus far, but every single donation helps, especially if I manage to go over my target by a 1000%!
 
Thank you so much for reading, watching and especially donating.
xXx
 




Free on Kindle 11-14th May - Rafi Brown and the Candy Floss Kid


From Sue Stern:  Hello everyone,

Jo’s asked me to talk about my fundraising for Invest in ME. Actually it was done in a back- to- front way and I'll explain later what I mean by this.

But first I should begin by telling you about my connection with this horrible condition: I’m the mother of someone who developed this in 1994 while at university. In 1997 he spent ten weeks at the National Hospital for Neurology in London, arriving there unable to sit up, barely able to speak, but leaving ten weeks later able to walk round Queen Square, and returning home, knowing he could push through and he’d be better. His experience at this time consisted of extreme exhaustion. He was about 60% recovered when he fell ill with what emerged to be glandular fever. Epstein-Barr – From then on, in 2003, he has suffered from severe M E with additions, vertigo, tinnitus and a host of other things. Like all of you, he has fought – he’s a jazz musician, practising daily when he can. Tried everything, everywhere, medicines and alternate therapy – but nothing has helped.

A little about me: while Richard was at university, I rediscovered my old love of writing, joining a women’s writing group in Manchester and beginning to publish seriously in the year 2000. For an MA in writing the children, I wrote Rafi Brown and the Candy Floss Kid. It was my third novel, and after many rewrites, I decided to set up my own little publishing house, Red Bank Books to publish it, in February 2013. There followed, a great learning curve, working with Illustrator, Heather Dickinson and book designer in Texas (!) Who helped enormously with the layout and provided the correct PDFs for printing.

Like other writers, I write about people I have known or people I know, but transformed into new characters – Rafi is based on someone I knew well, he was dyslexic but is now a very successful person. I wanted to show that people with disabilities, are people first and foremost, within innate qualities, there if you can see them. Rafi just appeared to me, I could hear his voice, and I had an idea of the plot, which changed when Candy Floss emerged in a park nearby.

If you read the blurb later, you will see that she has a secret, revealed near the end of the book, which I don’t tell children, and if you buy the book, or download it free for M E awareness month, please don’t tell children who might read it! But I can tell you, Candy’s mum, Gemma, has M E, and after awful things happening with a social service carer, Candy, aged 11, looks after her mother on her own!

Now – fundraising –all the proceeds I’d made from selling this book since February, 2013 have been donated to Invest in M E. So that’s why it’s back to front. And I managed to complete the cell I'd chosen on the matrix rather quickly! I've been involved a little with IiME for some years, buying copies of Lost Voices quite a long time ago.

Because I 've now started writing other things, I’m not promoting the books so actively until I recalled it was M E awareness month.

I do hope you will all help me, and help us by downloading a copy – from 11 to 14 May, the Kindle version will be free from Amazon! Here are the links:

Amazon UK
http://www.amazon.co.uk/Rafi-Brown-Candy-Floss-Kid-ebook/dp/B00BZDOAY8/ref=kinw_dp_ke

Amazon.com
http://www.amazon.com/dp/B00BZDOAY8/ref=cm_sw_r_fa_ask_wgoPH.15Q804C

Please do download it, even if it’s hard for you to read, maybe someone else in the family will read it. Please share this with your friends. The more downloads there are, the higher it will go on the Amazon website, and then I hope very much that it will be seen by many more people, and they’ll find out something about M E.

I have an idea to tell Candy Floss’s story too, and for a follow-up to this book with Rafi. I’ve attached photos and in the next post I’ll attach some cartoons for you to download for children who might like to colour them in. Here’s the link to my website: www.suestern–writer.co.uk

Please do share this,if you can. And as one picture is work a thousand words, I thought I might add a couple -which hasn't quite happened so I'll post this and try again soon.

Warmest wishes to you all for better days, weeks, months and years!

Sue

Here are the links so you can download it now:
Amazon UK
http://www.amazon.co.uk/Rafi-Brown-Candy-Floss-Kid-   ebook/dp/B00BZDOAY8/ref=kinw_dp_ke
Amazon.com
http://www.amazon.com/dp/B00BZDOAY8/ref=cm_sw_r_fa_ask_wgoPH.15Q804C

And a few pictures:

After a reading at a local school:


At a School Summer Fair June 2013:


A Workshop at Didsbury Arts Festival  2013:

10 May 2014

Mamma Mia! - Bear's West End Debut

Our fluffy campaign mascot the Let's do it for ME! Bear first met young starlet Jessica Daley during her time in BBC talent show 'Over the Rainbow'.  They became firm friends and Jessica now helps him in his quest to raise awareness of ME whenever she can.  Bear was delighted to visit Jessica in London again recently.  Their mission: to raise awareness of ME once again!

Bear didn't know it but he was in for a real treat.. since his last visit Jessica has successfully graduated from Arts Ed and secured her first West End role.  She's now starring in the award winning musical Mamma Mia! as Ali.  It was a first for Bear to experience the extravaganza of a West End musical and with such a hit-filled uplifting show he hasn't stopped singing and toe tapping since.  While Bear is no old pro (as yet) at attending showbiz events or rubbing shoulders with celebs he managed to keep his cool when introduced backstage to leading ladies Steph Parry, Dianne Pilkington and Jane Milligan (left to right) in their fabulous flared neon catsuits.  Bear received a very warm welcome and a Mamma Mia! selfie to add to his awareness raising photo album - thank you ladies!

Bear meets some of the show's main characters fresh from the stage: Tanya (Steph Parry), Donna Sheridan (Dianne Pilkington) and Rosie (Jane Milligan)

Some 250,000 people are thought to have ME or CFS in the UK – 25% are severely affected and 10% are children. Some are so severely affected that they cannot move, speak or swallow. Find out more about ME and our campaign here.


Who could Bear meet next? Do you think you can get our cuddly, handsome mascot LDIfME Bear an introduction to a local celeb to help raise awareness of our fundraising campaign and the vital work of Invest in ME? Our awareness raising bears remain available for adoption to all good homes from our shop but we are now able to offer a limited number direct from Invest in ME at a reduced price while stocks last. These will be added to the IiME site soon and we will update this post, www.investinme.org and ldifme.org


Also see: Bear meets Emmerdale star Claire King and some of Andrew Lloyd Webber's favourite Dorothy finalists here. Bear was lucky enough to meet some of the lovely writers, directors and actors involved in making 'Many Happy Returns' a Dr Who audio play sold in aid of Invest in ME here.




Let's do it for ME!

Invest in ME (Research)

IiME International Biomedical Research Conference

IiME/UCL UK Rituximab Trial 

7 May 2014

Say Happy Anniversary with M.E Awareness!

Barnaby Eaton Jones is celebrating his 9th wedding anniversary today. "Ironically, without knowing it at the time, I got married in ME Awareness Month (the illness I've lived with since the very early '90s). So, do me a favour and help the charity I support (Invest in ME) reach their target for biomedical research by purchasing a copy of 'Running To Stand Still' (20th Anniversary) - an audio play with music. It's available from ..http://www.barnabyeatonjones.com/apps/webstore/ on CD, with P&P included, for a mere £6. Or you can download it for £3, from http://wirelesstheatre.co.uk/?s=running+to+stand+still at this link -
‘Running To Stand Still’ is a 60-minute audio play with original songs, featuring professional actors, with cameos from presenters on BBC Radio 4, BBC Radio Gloucestershire and Sky Arts 1, that deals with the illness M.E. as its focal point. It is written by a sufferer and it specifically addresses what happens to relationships around an individual who is stricken by the illness and should educate those that don’t know much about this life-threatening condition.  It is on The Wireless Theatre Company's list of Very Special Plays:  "All profits from this production are directed to the funding of a research centre, by Invest In ME, which concentrates solely on the illness that remains the focal point of this play." 

Many thanks to all the professional creatives involved, who have graciously given their time for free for this production. ME is an illness that is misunderstood and much-maligned in the general public’s eyes. The play aims to show the severity of the illness and the problems it causes for those around the sufferer. It’s serious, amusing, musical and enlightening in equal measures. Those with the illness should be able to empathise with this production. For those yet to be educated, you will surely sympathise when you listen to it. This wonderful play is featured on our main Let's do it for ME website (click here).

P.S. You can also spot Barnaby among the faces in this excellent music video recorded by Mama Chill for the 2013 release of her brilliant new M.E Awareness track, "Don't Say Nuthin' If It Ain't Worthwhile".

Happy Anniversary Barnaby and Kim!! 



6 May 2014

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. 

5 May 2014

From ME to You, With Love

Hello everyone!

I’m really pleased (and a little bit in shock still) to announce that my book, From ME to You, With Love is available to buy on Amazon, both in paperback and for the Kindle!



For anyone who is thinking ‘what on earth is she talking about?’, getting on for a year ago now I was out talking to a friend. I was telling her about how difficult it is to manage with ME, not only your physical symptoms but the stigma and disbelief you can be faced with, and how that can make every day so much more of a battle. I can remember saying to her ‘it’s a shame that there isn’t something that has LOADS of us telling the world how it is’. Then I thought that maybe I could try and achieve that, create something where we told the world just how devastating ME can be but also how, thanks to people like IiME there is a real sense of positivity and determination within the ME world that one day a cure or treatment will be found. That’s when the ‘Letters for Louise’ project started.
The book in paperback

I asked my friends initially to write a letter (anonymously if they wanted) addressed to anyone who had showed them disbelief, a lack of respect, neglect, misunderstanding… or the notorious ‘I don’t think you’re as ill as you say you are, because you don’t look ill’. I planned on putting it all in Word, printing it off and giving it to a few family members and friends, but then I thought ‘why not make this bigger and raise money for IiME in the process’? So I decided to make a book. I had no idea how to publish it, or if I would be able to publish it at all- but I just decided to ask loads of people for letters and work out the rest later on. I wrote a few letters too, and found it really therapeutic so I hope that the whole process helped those who contributed.

As time went on, the book started to take shape. Now, I had letters from people thanking others who had been so brilliant towards them. I had letters from people who were being so inspirational and crafting something amazing out of their massively restricted lives. I had letters of love, anger, pain- all of which were so raw and honest, and so heart-breaking. And so, as I began to put the letters in order, proof-read and check them all over, tissues were regularly added to the weekly shopping list!

Now I am so proud to share what has been a very hard, emotional but brilliant journey. It’s been really tough at times reading other people’s stories, especially when they have made me reflect on my own experiences of having ME. But it’s been inspirational and an honour to work with what I think are some of the bravest people ever. I’ve made new friends and I want to thank EVERYONE for their support, not only with writing letters but for giving me so much love and encouragement too.

I’m 25 and I’ve had ME since my late teens. I hate it. But this has just shown me that having it doesn’t have to stop your life there and then. I mean, I’ve just published a book… would I have ever thought of doing that if I didn’t have ME?!?!?

I’m over the moon to be giving the profits from the book to Invest in ME. Them, and the ‘Let’s Do It For ME’ lovelies are always so chirpy and upbeat despite being severely affected. They’ve definitely taught me a thing or two about how to make the best of a bad situation (as I’m sure that when I was severely affected I was an absolute misery to be around!!!)


Anyway, this is DEFINITELY not the end of the ‘Letters for Louise’ project, just the beginning. There may well even be a volume 2 at some point… although I need a bit of a rest first J For now, I’m really looking forward to sharing and promoting the book as widely as I can. I never thought in my wildest dreams that I’d publish a book so now I am going to believe that I can take this as far as I possibly can… and see if I can get some really high profile people to read it and help us in our battle to be taken seriously. If you don’t try, you don’t know!

The book is available at:



(I hope they are the links that raise a bit extra through EasyFundraising??) I’ve also bulk ordered a load to sell in person at a few events that I’m involved in so if you live in either Northampton or Taunton/ Wellington (Somerset), feel free to come and say hello J


The official Facebook page for the book is https://www.facebook.com/FromMEtoYouWithLoveBook

I hope you enjoy the book and thank you for all of your support!


Louise xxxx

4 May 2014

Keisha's Dreadlock Holiday for Charity

Tanya's eldest daughter Keisha, who suffers from Aspergers Syndrome along with anxiety and depression, wanted to do something significant to raise funds for Invest in ME Research and awareness about the illness on behalf of her two younger sisters, who both suffer from ME (they made an awareness video recently to highlight the illness and how it affects sufferers, you can view it here).

Keisha had her hair dreadlocked over a year ago and was exceptionally fond of them.  Her dreadlocks along with her piercings gave her a confidence, they were a stamp of her personality and identity.  For her fundraiser she wanted something that would have an impact on others - that would stand out.  She decided that she would have her dreadlocks cut off and her head shaved for her chosen charity.  It was the support she had from her boyfriend Jack, along with her family, that gave her the strength to be able to go through with this.  His unwavering strength and unconditional love for her has made her feel empowered.. Prior to her relationship with Jack, Keisha was unable to leave the house without full make-up, would have a crisis about what she was wearing and how she looked, even though she looked wonderful, and was crippled by enormous panic attacks and anxiety episodes.  Although the panic and anxiety episodes still occur she has far more confidence and feelings of self-worth because of Jack.

So, on Friday 2nd May the deed was done - Keisha had her dreadlocks cut off by her sisters and head shaved afterwards by her dad and Tasha together.  Here is a picture of the new hairless Keisha with her two sisters Tasha and Tara - and her dreadlocks!

We filmed the event and have set it to Sarah's Song because the proceeds from this song all go to Invest in ME too (plus it is such a beautiful tune).  You can find out how to download the song at the bottom of the blog post here.

You can still donate to Keisha's Justgiving page http://www.justgiving.com/keishasdreads and help her to reach (and hopefully smash) her target of £1000.
 Thank You
x~X~x 

2 May 2014

Let's get in gear for ME Awareness!

May kicks off a game changing season, with people refreshing their wardrobe for a fresh and summery look.  May is also the month for ME Awareness and Invest in ME is organising and funding game-changing biomedical research into myalgic encephalomyelitis .... so what are we waiting for?
Let´s get shopping for ME!

The seller proceeds from our online Spreadshirt shops go direct to Invest in ME and are run by members of Team Let's do it ME!

Let's do it for ME! 

M.E Awareness (and fibromyalgia designs) 

The Big Sleep for ME 

Make MECrafts 

*****
Other online shops run by the team with seller proceeds to Invest in ME.

Carmel's M.E Awareness on Cafepress 

Mama Chill's dizzyjam - all profit from "Runnin' On Empty" and "One Stupid Dot" ranges to Invest in ME. 

Other options to Shop for Biomedical ME Research 

Other Items for ME Awareness 

If you shop on Amazon, please use this link to generate a percentage to Invest in ME 
at no extra cost to you or the buyer. 

Other Ways to Raise Funds for FREE while you shop or search online. 

Let's go shopping for ME Awareness - Let's do it for ME!

Thank you for your support!

Links to May 2014 Awareness Events by Invest in ME and their supporters.


*Let's do it for ME! is a campaign to help raise awareness of the work of independent UK charity Invest in ME (Research) and funds for the biomedical research into myalgic encephalomyelitis that the charity is organising and/or funding. Invest in ME is run entirely by unpaid volunteers who either have ME or are parents and carers of ME patients. They are driving the agenda of scientific biomedical research into diagnostic tests and treatments for myalgic encephalomyelitis in UK in collaboration with international researchers of world renown - 2014 will be an exciting year for progress in M.E. research - you can help*


Let's do it for ME!
Invest in ME (Research)
Invest in ME International Biomedical Research Conference (IIMEC)
IiME/UCL/UK rituximab trial 






Tasha & Tara's ME Awareness Video 2014

For ME Awareness Month 2014 Tanya's two youngest daughters Tasha (15) and Tara (14) decided to make a video to try and explain to none sufferers what it is like to live with this illness.  It took them some time to decide how to film it, they wanted to do something that didn't come over as self-pitying or frivolous.  They wanted to make an impact and to raise awareness and the very urgent need for funding towards biomedical research.
Together they came up with the concept of standing in front of a blank wall and silently hold up signs to convey their message.  They asked Sarah Louise "Feather" Jordan for permission to use her song to play throughout their video as they filmed themselves holding up the signs.  We feel the song compliments the girls vision of their video perfectly.  

Both girls suffer moderate/severe M.E. which means they spend most of their days housebound, they have to plan how to use their energy as they have so little and the rare trips out have to be carefully orchestrated so not to make them too ill.   

To make the video the girls spent hours with sheets of A4 paper and black sharpie pens creating the signs to hold up. This process took many hours and ended up with the whole family getting involved. This was because it took an awful lot of energy for the girls to do just one sheet as each word had to be coloured in to make it bold enough to be visible on the screen. 

This is the finished product, which we hope you enjoy.  Please feel free to share this video far and wide and help us to spread the message that M.E. is a severe, chronic, debilitating illness that affects so many of our population.  Together we can make a difference!
Sarah's Song
Lyrics by Sarah-Louise "Feather" Jordan

 If I could conjure colours
As I live and feel and think
Then love would shine like amber
And my joy would be bright pink,
My faith would be deep copper
While our heartbeats shimmered red,
The walls that keep me prisoner
Would be gold with stars instead,
I'd turn my slate-grey sorrows
Into oceans of soft blue
And everything that matters most
Would be all the shades of you,
So everywhere my palette
Could be blended with your own
As we keep painting something
That the world has never known
On a canvas that's unfurling
With each breath our lungs have kissed;
We'll paint the new day dawning
With its dew and clearing mist
And then we'll daub a message
On the blank space of the sky
Which reads "we'll live with beauty
Til the moment that we die

These lyrics were then set to music by Dave Freer and Peter Allan Singer.  The song can be purchase from any of the links below and all proceeds go to Invest in ME Research.









 
x~X~x

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.