Good Things Come in 3s - We're 3 Today!

Good things come in threes! It's been three years since three house/bed-bound ME sufferers launched Let's do it for ME to highlight and support the work of Invest in ME, crowdfund vital research into the disease and help the charity progress its plans to establish the first centre of excellence for ME in the UK.

Lots of good things have happened in the last three years thanks to your support. If you have ever donated, shared or helped us in any way, please take this time to congratulate yourself for the part you have played in the following achievements:

• Building of team work and a great community spirit, not least our planning group as people, inspired by the aims of the cause, got together to make it a success.

• Increased awareness through all sorts of creative fundraising events, poems, books, music, crafts and audio plays - ldifme.org, facebook.com/ldifme

• New researchers bringing their expertise to the field of ME research, including Professor Simon Carding, leader of the Gut Health and Food Safety Programme at the Institute of Food Research, UEA, and Professor Jonathan Edwards, Emeritus Professor of Connective Tissue Medicine, UCL, who pioneered the use of B cell depletion therapy (rituximab) to treat rheumatoid arthritis.

• Funding of the foundation gut research project and a PhD studentship at UEA as well as the initiation of this work - recently featured in the Institute for Food Research Newsletter.

• Funding and initiation of preliminary B-cell study for a UK rituximab clinical trial at University College London.

• The three most successful IiME international biomedical research conferences and pre-conference research meetings yet, fuelling collaboration between researchers and educating health professionals. This year, as well as a CPD accredited conference DVD (not yet released), IiME have produced a Booklet to educate GPs and other healthcare professionals about the current state of research into ME that includes a summary of the research meeting and conference by Professor Jonathan Edwards.

Also in progress:

• The initial target for the UCL/IiME rituximab clinical trial is 98.9% funded, so close! - ukrituximabtrial.org

• A second PhD studentship to learn about and research ME and gut microbiota.

• Invest in ME and Let's do it for ME are also working toward further research projects that will complement the existing ones, and our initial plan of a centre of excellence is still the main target of our work.

Our ability to initiate research projects and progress plans for a centre of excellence is due in no small part to the many people who have taken the time and effort to get involved so thank you..  and Happy Birthday!

from all at LDIFME and IiME

ldifme.org  investinme.org

Remembering Rob

Our thoughts are with the loving family of Robert Doyle, who sadly passed away on 6th July 2013. We first published this blog in memory of Rob on 4th May 2014, when his mother Diane had said, “Sunday is going to be hard as it is the first time we have spent his birthday without him. He would have been 31”. 

Robert Doyle 4.5.1983 - 6.7.2013

Rob fell ill with myalgic encephalomyelitis (ME) around 10 years ago and became well known by the name of “Knackered”in the online ME patient community. He helped to establish and run an internet forum called People with ME. This announcement on the forum was posted on Invest in ME Facebook group last year:

It is with great sorrow that we announce the loss of one of our own. Knackered, who was instrumental in establishing and running the People with ME forum, passed away on the 6th of July 2013.

A large gathering of family and friends including three members of the forum attended his funeral on July 17th. For most of the over 200 standing room only guests his passing came as a shock. For those of us who became his close friends with daily contact, we knew he had suffered severe complications over many months and had great difficulty in receiving proper medical care.

For the family and friends who knew him, Robert Doyle was bright and funny, thoughtful and intelligent, with a mischievous sense of humour, a ‘wind-up-merchant.’ Often wise beyond his 30 years, Rob was far too young to be lost to his family and friends who miss him terribly.

Rob’s sister has set up a page for charitable donations in his name at:

https://www.justgiving.com/Rachael-Smith154/

We miss our dear friend Robert Doyle

Tino, Joy Scobby, Beorc, Polly, Snow, Stuart, Flex, Hatshepsut

Rob at a family wedding

Rob's mother Diane knew that the forum had members from all over the world and that Rob made some lovely friends, not all with ME. Her response to the tributes from his online friends:

“First of all I would like to thank you all for being good friends with Rob, I don't think he realised how well thought of he was. Rob started with ME when he was about 21. At the beginning he coped going part time to uni and part time work. As time went on Rob's life changed, as you all know what it's like, never going to family parties and get-togethers. Most of his life was four square walls. He described his illness as having flu all the time. Last year he heard about a doctor in the Netherlands who was doing good things with ME sufferers. He was looking forward to going with his dad to see if anything could be done. Then at the beginning of this year things changed, he was in terrible pain he tried A&E, local doctors and even went private. He would have done anything for relief but none came. His own doctor more or less threw him out and said there was nothing wrong with him. He tried everything to no avail. No-one deserved to be treated this way. Just before he passed, he read about Lyme and wished he had known about it earlier. It's a shame he found no peace. Rob never lost his sense of humour. He was funny, generous, would do anything for anyone, and was looking forward to coming to the coast to live, but the NHS took everything away from him. All I can say is fight the NHS and the doctors try and stand up for your rights, and now and then think of Rob.” 

Rob with sister Rachael

Diane said that Rob had “asked that he didn't die in vain”. His sister Rachael created a JustGiving fundraising page and Facebook group and Rob's wonderful family, including sister Jo Ann, niece Lucy, and their friends set about a number of ways to raise funds for Invest in ME. This included selling the Christmas cards and calendars produced by our campaign in support of Invest in ME, wristbands, running raffles and collections at family events and, “anything else I can think of to make money for such a deserving cause, we just want to do something for others who suffer just like Rob”. She wrote:

In July I lost my younger brother Robert who suffered from ME. We're trying to raise money for a great charity that doesn't get the publicity it needs to raise the fund that so many deserving people in this country, and others, need.

ME stands for Myalgic Encephalomyelitis, And there are over 250,000 sufferers of ME in the UK alone, with around 25% of them being severely affected, in other words they're bed or house bound. with your help, we can help these people, and the their families.

Your donations will be a BIG help for such an unknown cause, no matter how small.

People who suffer from Myalgic Encephalomyelitis (ME) are forced to live in a bubble. Invest in ME campaign to burst that bubble by raising awareness and funding high quality biomedical research into ME. To those donating, “ I cant thank everyone enough, this is a charity that is so close to us as a family”. 

Our team members join Invest in ME in expressing our thanks to Rob's family for allowing Robert's memory to be used to raise awareness of ME and help others. Our hearts go out to them. Rob is also remembered in the Spring 2014 Journal of Invest in ME and the 2014 Invest in ME Conference DVD (IIMEC9) is dedicated to his memory.

Robert Doyle - forever in our thoughts.

Robert Doyle 4.5.1983 - 6.7.2013

A New ME by Barry John Evans

Is available in paperback and also kindle...

Hello everyone, I thought you may be interested to hear that I have had a book published! It's about my journey so far with M.E. whilst I also talk about my struggles with autism and depression too. If you'd like to know a bit more then I've recorded a video which you can watch via this link: https://www.youtube.com/watch?v=eG8bCFpbseE


Also, if you'd like to purchase a copy then you can do so through the following links: http://www.amazon.co.uk/A-New-ME-Looking-future/dp/1499585497/ref=tmm_pap_title_0?ie=UTF8&qid=1403374862&sr=8-1 - this is the link for UK readers who would like a paperback. It's currently at £5.89

http://www.amazon.co.uk/New-ME-Barry-Evans-ebook/dp/B00L1LIT6E/ref=sr_1_1?ie=UTF8&qid=1403374862&sr=8-1&keywords=a+new+me - this is the link for UK readers who prefer to read a kindle. It's currently at £3.06

http://www.amazon.com/A-New-ME-Looking-future/dp/1499585497/ref=tmm_pap_title_0?ie=UTF8&qid=1403375040&sr=8-6 - this is a link for everyone who lives in the US and would like a paperback. Currently at $8.71

http://www.amazon.com/New-ME-Barry-Evans-ebook/dp/B00L1LIT6E/ref=tmm_kin_swatch_0?_encoding=UTF8&sr=8-6&qid=1403375040 - Finally, this is a link for everyone in the US who would like a copy on kindle. It's at $5.19.

Also, if you buy it through this link then it generates an extra donation to Invest in ME at no extra cost to the buyer - http://www.amazon.co.uk/?_encoding=UTF8&camp=1634&creative=6738&linkCode=ur2&tag=ininme-21

It's also available in ALL countries and 10% of  ALL profits go to the charity "Invest in ME".

You can also check out the reviews on Amazon.

Hope you all enjoy!

Barry x

P.S. thought you might like to see a video I did for M.E. Awareness week on what's it's like to live with the illness: https://www.youtube.com/watch?v=TIvc_1SCKhI

"Thoughts" 24 Rhyming Reflections of HME and CFS/ME by Helen Beeston

Helen Beeston has published a book of rhymes and is particularly keen to donate at least 5% of her proceeds to the Invest in ME Biomedical Research Fund. At least a further 5% will be donated to research into Hereditary Multiple Exostoses (HME), a condition that she was born with, resulting in operations from age 11 to 22. Helen's book is an easy and interesting read for friends and family, and will no doubt resonate will fellow "spoonies" out there.  Helen wrote:

Thank you for allowing me to add a guest blog. 

I have ME and have recently published a book about my journey. 

I wanted to tell you about it. It’s available in Kindle format and as a paperback from Amazon. At least 10% donation from royalties will go towards research (IiME and HME). 

Use the link below to Amazon, as that generates an extra donation to Invest in ME.
http://www.amazon.co.uk/?_encoding=UTF8&camp=1634&creative=6738&linkCode=ur2&tag=ininme-21

I've written some poems.

All printed in a lovely e-book

You’re welcome to take a look.

I read some out

To explain what my story is about.

It’s difficult to say how we feel,

Our symptoms are so very real.

At times we look well

Even if under a horrible spell.

I am sure that you will relate

And identify a similar trait.

I hope my humour will make you smile

And not run a mile.

They may make you feel sad

But hopefully only a tad.

Have handy some tissues

In case it opens any issues.

I may give you a tool

If you use it, that’s cool.

It’s very difficult to start

It needs to come from the heart.

It helps me make sense of the thoughts in my head

It could make you sleep better in bed.

Comments on the book received so far:

“Just finished your book it is really amazing, you should be really proud of it they are really great :) love the explanation really adds the personal touch :) xxx ”

“just to say that I really liked your book and I could relate to a lot of what you said. We are always expected to be so upbeat in this society so people don't let on about all their fears,  unhappiness and feelings of inadequacy. Including so-called 'healthy' people! I think you are very brave to have written about your feelings - and a stroke of brilliance to do it in rhyme - it makes it very accessible somehow. Thanks again for your book!”

5 star rated “An excellent read. My son has the same condition so I could relate to it. I would certainly recommend”.

Congratulations Helen and thank you for supporting Invest in ME via Let's do it for ME! 

Remember that using this link to buy anything from Amazon generates an extra donation 

to Invest in ME at no extra cost to the buyer - http://amzn.to/1qwizdU

Thank-you for your support - Let's do it for ME!

******************

*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 encephomyelitis 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!
ldifme.org

IiME/UCL/UK rituximab trial 
ukrituximabtrial.org 
Invest in ME (Research)
investinme.org
Invest in ME International Biomedical Research Conference (IIMEC)
investinme.eu

Cake stall fundraising

From Tabi Dale:  So I decided to try a cake stall at a local school 'fun day' today to see if I could raise some money. Last year I did a run for Invest in M.E. and raised a little bit so thought I would do something else aswell...

My Mum has been ill with M.E. for most of my life (27 years) and as the years have gone on she has gradually got worse but has never given in to this life robbing illness. Nor does she moan about how ill she is, so for many years I didn't know the extent of her suffering. Now as her main carer I want to try and show as much support as I can and fundraising for Invest in M.E. comes into that. I feel like its my turn to show the same love and self-sacrificing care that she has shown me my whole life and still continues to now, despite how ill she is. 

I do enjoy baking so i thought it would be fun to sell some cakes... well the weather didn't end up making it as fun as i thought. 

i had an idea in my head about getting a nice fruit cake (didnt fancy making one myself) and icing it nicely with 'Invest in M.E. written on it... i've never iced a cake before... sadly i dont have a picture of my first attempt (shame as it would have probably amused some). this was my final attempt

 I found a lovely website that do little cake toppers that print your picture onto edible paper (there are many websites but this one was cheaper and offered to post the next day at no extra cost). i was quite excite when they came!

my 3 year old even helped make some cakes by making his favourite...chocolate rice krispie cakes

This morning came and i checked the weather, not good for the afternoon, thunderstorms and rain predicted. I was informed by email that the fun day was still going ahead and would mostly be inside so all would be ok.

off we went to set up and i was quite hopeful when we set it all up. 

There was another cake stall that had their cakes priced a bit lower so i lowered mine but sadly as the rain and thunder started the people thinned out (although many came inside i think most went home). 

By the end of it i had sold just under a 3rd of the cakes, raising £25 and handed out a few leaflets. I think i'll stick to doing runs!

Although I didn't raise much perhaps at least I have raised some awareness and that is half the battle.

UPDATE by Let's do it for ME .. some sweet soul matched Tabi's fundraising with a donation to our JustGiving page for the Invest in ME / University College London (IiME/UCL) rituximab clinical treatment trial with this kind comment .. "Thank you to Tabi Dale & Son for your fantastic efforts on behalf of Invest in ME. Hope you don't mind if I match your fundraising amount as a thank you :) Donation by Anonymous on 29/06/14 £25.00 + £6.25 Gift Aid.  https://www.justgiving.com/ritux4meuk/ Big THANKS all round!

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.
  
  
  See tribute to our supporters - an international event.
  
  
  
  
  
  Let’s Do Research! Let’s Do It For ME!
  
   
  
  
  Click here to see/download our posters for the IIME/UCL rituximab trial.
   
  
  

Read this May 2014 Newsletter on Invest in ME Website

 

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

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!

ldifme.org

Invest in ME (Research)

investinme.org

IiME International Biomedical Research Conference

investinme.eu

IiME/UCL UK Rituximab Trial 

ukrituximabtrial.org

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!! 

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. 

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:

http://www.amazon.co.uk/From-ME-You-With-Love/dp/1497569524/ref=sr_1_1?ie=UTF8&qid=1399226840&sr=8-1&keywords=from+me+to+you%2C+with+love in paperback

and for the Kindle http://www.amazon.co.uk/From-ME-You-With-Love-ebook/dp/B00K4EG70E/ref=tmm_kin_title_0?ie=UTF8&qid=1399226840&sr=8-1

(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

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! 

http://ldifme.spreadshirt.co.uk/

M.E Awareness (and fibromyalgia designs) 

http://653855.spreadshirt.co.uk/

The Big Sleep for ME 

http://thebigsleepforme.spreadshirt.co.uk/

Make MECrafts 

http://www.makemecrafts.com/Make-ME-Spreadshirt.html

*****

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

Carmel's M.E Awareness on Cafepress 

http://www.cafepress.com/meawareness

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

http://wwwmamachill.dizzyjam.com

Other options to Shop for Biomedical ME Research 

http://ldifme.org/shop/

Other Items for ME Awareness 

http://ldifme.org/awareness-materials/

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. 

http://www.amazon.co.uk/?_encoding=UTF8&camp=1634&creative=6738&linkCode=ur2&tag=ininme-21

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

http://ldifme.org/raise-funds-for-free/

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.

http://blog.ldifme.org/2014/05/me-awareness-may-2014.html

*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!

ldifme.org

Invest in ME (Research)

investinme.org

Invest in ME International Biomedical Research Conference (IIMEC)

investinme.eu

IiME/UCL/UK rituximab trial 

ukrituximabtrial.org