RIP Emily Collingridge - Emily's Appeal

Rest in Peace Emily Rose

We would like to extend our deepest sympathy to the family and loved ones of Emily Rose Collingridge, who very sadly passed away on Sunday 18th March, aged 30.  This picture is by kind permission of Emily's friend, Kathryn Davy.

Her mother, Jane, has asked for Emily's Appeal to be reposted.  Emily tapped these words into the keyboard of her smartphone over the course of many weeks during 2010-2011, while she still had the strength in her body to do so.

Emily's Appeal (written 2010-2011)

It has been said that the following is hard to read, but that is all we ask you to do: to read it, to forward/re-post it and to pledge your support for the many thousands of people like Emily who have to LIVE it.

My name is Emily. I developed the neurological condition Myalgic

Encephalomyelitis (ME) when I was 6 years old. In April 2011 I turned

30. I still have ME.

ME coloured every aspect of my childhood; it painfully restricted my

teens and it completely destroyed my twenties. Now, as I move into the

next decade of my life, I am more crippled than ever by this horrific

disease.

My doctors tell me that I have been pushed to the greatest extremes of

suffering that illness can ever push a person. I have come very close

to dying on more than one occasion. If you met me you may well think I

was about to die now - it's like that every single day. After all

these years I still struggle to understand how it's possible to feel

so ill so relentlessly.

My reaction to small exertions and sensory stimulation is extreme.

Voices wafting up from downstairs, a brief doctor's visit, a little

light, all can leave me with surging pain, on the verge of vomiting,

struggling with each breath and feeling I'll go mad with the

suffering. Of course it can also be as bad as this for no particular

reason - and often is. I cannot be washed, cannot raise my head,

cannot have company, cannot be lifted from bed, cannot look out of the

window, cannot be touched, cannot watch television or listen to music

- the list is long. ME has made my body an agonising prison.

My days and nights are filled with restless sleep interspersed with

injections, needle changes (for a syringe driver), nappy changes (as

well as experiencing transient paralysis and at times being blind and

mute, I am doubly incontinent) and medicines/fluid being pumped into

my stomach through a tube. My life could be better if I had a Hickman

line (line which goes into a major vein and sits in the heart) for IV

drugs and fluids, but such a thing would likely kill me. I'm on a huge

cocktail of strong medications which help, yet still most days the

suffering is incomprehensible. During the worst hours I may go without

the extra morphine I need as I feel so ill that the thought of my

mother coming near to administer it is intolerable - this despite pain

levels so high that I hallucinate.

I live in constant fear of a crisis driving me into hospital; our

hospitals have shown such lack of consideration for the special needs

of patients like me that time spent in hospital is torture (eased only

by the incredible kindness shown by some nurses and doctors) and

invariably causes further deterioration.

Many days I feel utter despair.

But, unlike some sufferers, over the long years in which I've had

severe ME (the illness began mildly and has taken a progressive

course) I have at least had periods of respite from the absolute worst

of it. During those periods I was still very ill, but it was possible

to enjoy something of life. So in these dark days I know there is a

real chance of better times ahead and that keeps me going.

My entire future, and the greatly improved health I so long for,

however, currently hinges on luck alone. This is wrong. As I lie here,

wishing and hoping and simply trying to survive, I (and the thousands

like me - severe ME is not rare) should at least have the comfort of

knowing that there are many, many well-funded scientists and doctors

who are pulling out all the stops in the quest to find a treatment

which may restore my health and that the NHS is doing all possible to

care for me as I need to be cared for - but I don't. This wretched,

ugly disease is made all the more so through the scandalous lack of

research into its most severe form and the lack of necessary,

appropriate support for those suffering from it. This is something

that must change.

And that is why I tell my story; why I fight my painfully debilitated

body to type this out on a smartphone one difficult sentence at a time

and to make my appeal to governments, funders, medical experts and

others:

Please put an end to the abandonment of people with severe ME and give

us all real reason to hope."

By Emily Collingridge 2010-2011

When news of Emily's passing broke, IiME Charity commented on their Facebook group:

“This is a very sad day and our condolences go to Emily's family. Emily contributed to Lost Voices and her story was one of the most severe of all. This truly sad event emphasises the need for a strategy of biomedical research into ME and proper education of healthcare staff about this disease.”

Emily was a much-loved friend of some members of our team and, as ME sufferers ourselves, we are playing our role in helping to bring about the change that Emily appealed for by running this campaign, as we believe that Invest in ME's proposal for the first UK Centre for translational biomedical ME research is our best hope of achieving a better understanding of the underlying disease process of myalgic encephalomyelitis and translating that to treatment as rapidly as possible, for the many thousands of sufferers of severe ME of all ages across the UK, and together with opportunities for education and training for healthcare professionals. Sadly, this will be too late for Emily and all those already lost to the ravages of this disease, and our hearts go out to Emily's friends and loved ones.  Please help Invest in ME to help us.   

Thank you for your support.

Team "Let's do it for ME"

*Lost Voices is available from Invest in ME.

*Voices from the Shadows is a film which developed from Lost Voices.

*New ME Awareness Posters - painstakingly designed over a period of months by a sufferer of severe ME and featuring some fellow members of our team. We are currently awaiting confirmation from a company regarding help with printing and distribution, but in the meantime, they may be printed off to raise awareness and funds for Invest in ME charity.

*ME International Consensus Criteria (short version with link to full version)

*Emily was the author of the highly-regarded book Severe ME/CFS: A Guide to Living

*A Facebook group has been opened by her friends “In Memory of Emily Collingridge”

Rosa's Wristbands

Fancy Design

These lovely blue ME Awareness wristbands are made of blue baby wool tied with ribbon and were crocheted by Rosalind Amor and donated by her to Invest in ME charity to raise funds for the UK Centre. Rosa says:

"I am now a year older than the age Alison Hunter was when she died of ME in 1996. I am 20 years old. Alison Hunter had suffered, horrendously, from ME for 10 years prior to her death. Her symptoms included seizures, paralysis, gastrointestinal paresis, heart damage, massive ulceration to her throat, horrendous neurological problems and overwhelming infection.

I have had ME for 12 years though fortunately not as badly as Alison Hunter. My ME seemed to be triggered by a virus of the gut when I was 8 years old. However, the exact cause of my many unpleasant symptoms (pain, nausea, partial paralysis, *brain fog*, extreme tiredness and lack of stamina, hypersensitivity) was unknown to me and my family until last year when some Mitochondria tests gave a glimpse of at least part of what is going wrong. You can find out more about me via my blog.

Simple Design

I have been crocheting wristbands to raise awareness and funds for the new centre proposed by Invest in ME Charity. There are 2 different designs and they are £2:50 each. I think this new centre is crucial if the ME community wants to move forward, towards better understanding and care for people like Alison Hunter and myself.  You can find out more about Alison Hunter here.

So please buy my wristbands to raise awareness of the suffering endured by teenagers with ME and funds to found a centre to provide a better future for them.

Please order by emailing info@investinme.org

Thank you for buying them."

Many thanks and very best wishes to Rosa.

You can visit Rosa's Facebook group - Let's do it for ME wristbands brigade - to post any photos of you wearing your wristband.  UPDATE: You can now also find Rosa's wristbands on the Make ME Crafts Facebook page.

The Alison Hunter Memorial Foundation kindly sponsored two of the annual Invest in ME International Conferences on biomedical research by donating toward production costs of the DVD of the 4th conference in 2009 and contributing toward the cost of the 5th Invest in ME conference in 2010.

UPDATE: The 7th IIMEC was held in London on 1st June 2012 and was titled: Building a Future for Research into ME Clinical and Research Updates in Myalgic Encephalomyelitis.  A new Clinical Autoimmunity Working Group, initiated by collaboration between Invest in ME, The Alison Hunter Memorial Foundation, and researchers from the University of East Anglia and Bond University, met for the first time at the end of May.  We, as ME patients, are very appreciative of the dedication and hard work of all involved in this exciting new development and hopeful of the progress that these collaborative working arrangements will achieve.

On 9th July Rosa said,

"We raised £104.72 during ME awareness month with collecting tins. In spite of being bedridden with repeated vomiting:) 

Haven't made any wristbands though, hands too weak.

Have to buy Jon Watson's (Make ME Crafts) for time being.

I so wish we could get this centre running, I need it!"

So come on everyone - let's do it for Rosa and others like her - Let's do it for ME!

(for options to simply donate to the research now)

Big Finish helps our Big Cause!



Lisa Bowerman and Ayesha Antoine

Big Finish Productions is pleased to announce a very special release to celebrate the twentieth anniversary of archaeologist and adventurer Bernice Summerfield. Many Happy Returns will be a unique feature-length drama where every penny will go to supporting the charity Invest in ME.

'Jac Rayner first approached Big Finish about possibly doing a small charity download late last year,' explains producer Scott Handcock. 'Gary Russell and I discussed the idea with David Richardson and quickly came to the conclusion that the Bernice Summerfield range would be the perfect platform - not least because of Jac's close connections with the character. So I started sounding out a few actors, writers, sound designers - as you do - and nobody we asked said no... so it ended up being the sort of epic rolling adventure we never anticipated!'

'It's amazing how many people have donated their time not only for Jac's charity, but for what will hopefully be a very special release for Benny fans. We've tried to reunite as many familiar faces as possible. It's the Bernice Summerfield equivalent of The Five Doctors - twenty years, a whole host of old friends, and all in the name of charity! I know I speak for everyone involved when I say it's been an absolute pleasure, honour and delight to work on - and one of the maddest days in studio we've ever had!'

Invest in ME works to raise awareness and funding into research of ME, a serious neuro-immune condition that affects 250,000 people in the United Kingdom. Its latest project - Let's Do It For ME! - is a patient-driven campaign raising vital funds for a Centre of Excellence at the University of East Anglia. The centre aims to translate scientific findings and evidence from research into applicable treatments for people suffering from ME, focussing on immunology and virology.

Big Finish stalwart Scott Handcock will also be running the Edinburgh Marathon in May on behalf of Invest in ME. For more information - or to sponsor him - please visit www.justgiving.com/scott-handcock/

Many Happy Returns will be released for download only later in the year. Please click on the link to pre-order and for full details on what the adventure has in store!

A BIG THANK-YOU to all involved with this fantastic project at BIG FINISH!

---

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

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

'Let's do it for ME'. 

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

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

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

Order yours today!

Big Thank You!

Photo of Jan with dad Duncan taken at her
brother's wedding in 2006 (prior to Jan relapsing)

We wanted to say a big THANK YOU to Duncan Laverick who has kindly donated money given to him at his recent well deserved retirement from SABIC (formerly ICI) at Wilton, Teesside. That's both the gift from colleagues and friends along with the company gift he received - a total of £370 plus gift aid of £92.50 giving a grand total of £462.50 towards Let's do it for ME / Invest in ME and the biomedical research centre at the University of East Anglia, Norwich.

Duncan served ICI / SABIC all of his working life in Research and Development in the Wilton Centre and latterly on Olefines 6 on the Wilton site.
We wish him a long, happy and healthy retirement and again thank him for his generous donation towards this much needed research.

Now some of you will have spotted the same surname as our own Super Jan! Yes it's her Dad (I won't write what she said about him!).

Jan has kindly let me (Paul Kayes) write this short thank you as she is in relapse at present and not well enough to do it herself. Maybe because I too worked at ICI Wilton for 27 years of my working life.

Jan Laverick and Jo Best are the two main instigators of the Let's do it for ME Campaign and work (I was going to say tirelessly) for the cause...however as many will know, campaigning is not without its payback for people with M.E. in terms of health. Despite their limitations, they do a fantastic job on behalf of all of us sufferers.

Why Rowan has joined Let's do it for ME ...



Rowan says, "Let's do it for ME!"

"Hi my name is Rowan, I have had M.E. for over 2 years.  What started with a few symptoms of pain and horrendous fatigue, has now escalated into something that has rendered me unable to walk for more than 10 paces before weakness and pain sets in, and I have to sit down there and then. The same happens to my arms, which means I have trouble lifting, carrying and cooking, sore throats, eye pain and photophobia, severe head pain/ache, intolerance to noise, temperature fluctuations, and a fatigue that is difficult to describe, are just some of an endless exhuastive symptom list that I and other sufferers have to live with.

I am a wife and mum that now cannot get my daughter to school and has to rely on others to do this for me, a husband who cooks when he comes home from work, that like others desperately want recognition for this debilitating illness. 

We need proper medical care, we need the biomedical research that Let's do it for ME are campaigning for, which is why I have got involved and have started raising money for Invest in ME through selling blue ribbons for awareness, filling my copper pot up (with lots of silver) and when the better weather gets here I will, with my husband, sell at car boots the kind donations that friends and family have given me to help raise the much needed money to make this a reality."

Rowan is pictured wearing a T-shirt from our on-line shop, with a copy of the cheeky M.E Laid Bare 2012 calendar and the campaign leaflet.

Many thanks to Rowan, her family and friends for all they are doing through Let's do it for ME!

New Total £29,000!

Posted by Invest in ME Charity ...

 

Invest in ME (IiME) has, as an objective, to make a change in how ME is perceived and treated in the media, by health departments and by healthcare professionals.

We aim to do this by concentrating our efforts on three main areas - funding for biomedical research into ME, education of healthcare professionals, the media and the public and lobbying for improvement in the treatment of people with ME and their families.

We have no membership fees and try to offer as much as possible for free, or at cost price.

Our efforts are focused on setting up a UK examination and research facility which will provide proper examinations and diagnosis for ME patients and a coordinated strategy of biomedical research into ME in order to find treatment(s) and cure(s).

Together with an ever growing number of resourceful and dedicated supporters we are all working toward the goal of making a positive contribution to progress.

The Invest in ME biomedical research fund, aimed at funding biomedical research into ME based in Norwich, Norfolk, has now reached £29,000.

We applaud the vision, dedication, positive attitudes and sheer hard work being performed by this wonderful band of supporters and the Let's Do It for ME campaign.

Extraordinary efforts from outstanding people who are not content to just stand still but wish instead to make progress.

We believe this campaign will make a difference.

Support ME Awareness - Invest in ME - Let's Do It for ME! 

Well done everyone and thank you!

Snapper Kal's Photos and Fundraising

Message from Snapper Kal about her photos and using her talent to raise money for Invest in ME....


Hi everyone, 


My name is Kim, also known as Kal or 'Snapper Kal'. I have had M.E for 8 years now and I would like to give something to those who are trying to research the causes and treatments for this debilitating disease. 


It's been a struggle in all these years to feel in any way useful as I never know how I will feel from one hour to the next and therefore getting any kind of work is nigh on impossible - which I'm sure you understand all too well. 


I am luckier than a lot of sufferers as I have some 'good' times these days – I didn't for the first 2 to 3 years - I am forever grateful for those but it still affects my life on a day to day basis. For me to find something that I can enjoy doing and that I have the energy for is a blessing, and I would like to do something to aid the people fundraising. 



All your support would be appreciated, please do add yourselves to my group page on Facebook – Photoshop Snapper Kal - and add your friends.

The more people on the site, the more chance of sales and money – 10% of sales - being raised for this cause. 


Many thanks, 
Kim “Snapper Kal”

Laura Groves - Running the Brighton Marathon

Laura tells us why she is taking up this challenge:-

“Hi all, my name is Laura and I’m 31. I have the most amazing 11 year old daughter (soon to be 12) and family is everything to me.

I am currently in training for The Brighton Marathon- I am running this to try and raise as much money as possible for the charity Invest in M.E.

The reason for this is my beautiful sister Kerryn has had this awful illness for 10 years and I want with all my heart for this illness to be shown for what it is, how real it is, how it takes people’s normal lives away and to pray that a cure is found.  

I have watched my sister go from being a very active, happy, talented and high-spirited girl, to someone with no confidence, in pain everyday, and living nearly her whole life indoors.

On top of this, I see far too many people judge the illness without knowing it. I watch people say to my sister ... "yes I know how you feel, I’m tired" and I just want with all my heart for the truth to come out one day and that all these people will understand what their comments do and how they feel to not only my sister, but to all you fellow sufferers and your loved ones.

M.E is a very real, very soul destroying illness. I love my sister more than I can say and my heart goes out to each and every one of you that suffer. I will raise as much money as I can and we can all hope that one day this fight is worthwhile.

In the meantime, I hope you are all as well as possible and are getting all the love and support you need.

My heart goes out to you all and I hope I do you all proud on race day.

Kindest regards

Laura.”

Support Laura today at:
http://www.justgiving.com/Laura-Groves6

Annabel's Screen-Free Weekend



Annabel Schleutker

 Hi my name is Annabel, I’m 40, and I’ve had M.E for 13 years now, the last eight severely. I’ve been 100% housebound for the last 20 months, but also during these last eight years I had 16 months where I was bedridden, unable to even sit up, read, watch tv and could only talk for a few minutes a few times a day. Some people, sadly, remain bedridden for much longer than me, for years and years.

M.E robs people of so much. I’ve missed out on a career, social life, raising a family and much more. I am not alone. There are many of us living with this very debilitating illness.

During the years of living with this illness, different highly speculative treatments are touted. They often involve a lot of expense, are often ineffective and can make people worse. It’s an emotional rollercoaster trying different treatments and yet people are desperate and will try speculative treatments with risky outcomes. I’ve done it myself, leaving me with dashed hopes and depleted finances.

Research has been done and studies have shown the biological processes at work in M.E; however, to date these findings have not translated into effective evidence- based treatments for people with M.E. With this in mind, when I heard that the excellent charity, Invest in M.E, are aiming to set up a bio medical treatment centre at the University of East Anglia, I wanted to get involved, as I know this could help so many people with M.E finally have access to effective bio medical treatments that could help them and improve their quality of life.

Let’s do it for M.E is a patient driven campaign to raise awareness and funds for the proposed bio medical treatment centre at the University of East Anglia. So I knew doing some fundraising for Let’s do it for M.E would be my way of being able to help in a small way this centre become a reality.

Being housebound, running marathons or climbing mountains are not possible. So I’ve set myself the challenge of going a weekend, March 10-11th, screen free, not logging on to the internet, my I phone or watching tv. As I’m housebound and live alone, the internet is a life saver for me, connecting me to the outside world, so going screen free will not be easy, but if it means I can raise some coppers for this excellent campaign, it will be worth it – and hey I might even read a book!

I would be so grateful to anyone who is able to make a small donation. You can donate at my justgiving page, www.justgiving.com/Annabel-Schleutker12

A big thank you.

Annabel

Weight loss challenge

Yesterday, Tanya and Dave started their weight loss challenge. Here, Tanya explains why…..

‘Our daughter Tara fell ill with M.E. in November 2010, when she was just 10 years old.  Since then she has been unable to attend mainstream or medical school.  This led us to make the difficult decision to de-register her and we will begin home-schooling ourselves when she is a little stronger and able to concentrate enough to take short lessons. 

As a family our lives have dramatically changed since this illness, Tara has two older sisters who find it very difficult to see her in pain and unable to join in with them.  They try not to go on about their social lives in front of her because they feel guilty being able to do all the things Tara should be able to do too.  However, Tara never complains and always sees the bright side of any situation, no matter how hurt she feels inside.  She suffers from chronic pain, headaches, dizziness (blacking out on occasions), regular sore throats and swollen glands, nausea, noise sensitivity and can’t manage large social gatherings due to the sensory overload and exhaustion it causes.   These are just a few of her symptoms – there are many more! She needs to take various medications to help her control her symptoms and misses life as it used to be. 

Tara used to be such an active child.  Always on the go, singing all the time and dancing her way around the house.  She attended tap and modern dance lessons, musical theatre and also dance groups at school.  Nowadays we use a wheelchair for when we go out as a family, as Tara can’t walk too far due to exhaustion and the pain it causes in her limbs and back.  She struggles to sing and if she does, it’s at a whisper as the strain of it hurts her throat.  Although at the moment her activities and social life are limited and have to be managed very carefully, she is able to maintain friendships.  Sadly the number of her friends has dwindled as it is difficult for her to participate with them as a “normal” child would, she can’t go roller skating, swimming or mess about in town with them.  BUT the friends she does have are extremely supportive and loyal and understand that she is limited in her activities and pop in after school for 10 minutes to say hi – or visit for a couple of hours at the weekend to dress up or watch films together.

We have no idea what the future holds for Tara but we are positive and pro-active in her care, always looking out for new treatments and medications which may help her.  We are currently following a regime with both the Children’s Hospital and an Osteopath/ME Specialist.  At the Hospital we utilise the skills of the Consultant, Physiotherapist, Occupational Therapist, Clinical Psychologist and Pain Clinic.  We attend Hydrotherapy for half an hour once a week with the Physiotherapist and Occupational Therapy Group meeting for an hour once a week.  We have regular review sessions with the Pain Clinic, Clinical Psychologist and Consultant too.  The Osteopath/M.E. Specialist has just started treating Tara using the Perrin Technique and is herself an M.E. sufferer.

As a family we’ve had to make a number of adjustments and it hasn’t been an easy ride so far. During this time Dave and I have both gained some padding and now we feel in the right frame of mind to address this BUT wanted to do something to help Tara and other sufferers at the same time.

Invest in M.E. is a fabulous charity with a great vision for M.E. patients.  We want to help raise funds for them to achieve this goal and help support not only Tara, but all the children and adults whose lives have been so drastically altered by this devastating illness.

I have a whopping 42lbs to lose and Dave has 35lbs to go – so in total we aim to lose a combined weight of 77lbs by August!  We are starting our diet today – Saturday 28 January we hope to lose pounds whilst raising pounds for Invest in M.E.

We are asking everyone to please help us on our journey, but if you can’t afford to donate then please spread the word about Invest in M.E. and 

help us raise its profile and the need for more research and funding into this area.

The link to our Justgiving page is: -

http://www.justgiving.com/TonksWeightLossChallenge

or if you prefer, donations can be given for as little as £1 via text message, all you have to do is text:-

XPDL 95 £1 (or whatever amount you wish to donate) to 70070

Thank you.

Tanya, Dave, Keisha, Tasha and Tara Mawer

Paul and Susie March- Running the Paris Marathon April 2012

Running up a steep hill in Wimbledon at 9am last Sunday morning with my husband made me think about two things….

1.     Why did we go on a run in an area which feels like the most mountainous place in London if not the earth… and more importantly;

2.     Why was I training for a marathon when quite frankly running hurts and is quite boring?

Then I remembered….

Growing up, my Dad was like action man! He would play with my sister and I for hours, take us swimming, sledging, play rounders with us and all the other kids in our street…He used to play football, hockey, run and cycle regularly and was by far the fittest member of our family! His life was very active and then everything changed for him and our family when he got ME.

He can no longer work or do the hobbies he once loved. He can’t come and visit us in London where we now live. He can’t take my Mum on holidays or even go out most days. Some days he can’t even get out of bed.

Me and Dad

However despite this, there are things that he has done and continues to do that we are very proud of him for. He has made a lot of great friends with ME and has supported them in whatever way he can though he is limited by his illness. He has campaigned for ME awareness and has continued to fundraise and promote the ME cause over the last few years.

And this kind of puts the marathon in perspective! Yes, it is a few months training and it will be tough, but some people have it much tougher.

So we want to support these people and my Dad through the Let’s do it for ME campaign. We hope that this campaign will turn the tide for those with ME and that through the planned establishment of a Centre of Excellence at the University of East Anglia specialising in biomedical research into ME,

ME might finally be understood and a cure found.

Please support us in our race at –

http://www.justgiving.com/MarchyMarathon

Thanks for reading and we will keep you updated with our progress!

Susie

Susie and Paul's friend David Coleman is also running the Paris Marathon for us -
http://www.justgiving.com/David-Coleman1

Paul and Susie



Paul, Susie and David in Paris on Saturday

UPDATE: Sunday 15th April - The Paris Marathon was televised live on Eurosport. 

Dave and Paul finished in under 4 hours and Susie under 5 hours.  It was tough going as it was cold and windy! 

Their Just Giving pages are still open for donations

Click here for Paul and Susie March's fundraising page.

Click here for David Coleman's fundraising page.

Please share and tweet - this biomedical research is aimed at finding treatment(s) for myalgic encephalomyelitis as rapidly as possible - thus helping many thousands of sufferers of all ages across UK and Europe and their families.

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

£25,000 target passed!

We are pleased to announce a new total of funds raised so far of £25,161. This takes us past the quarter way point on our way to raising the required £100,000.

Thank you to everyone who's helped us get this far, we'd love to raise the remaining £75,000 in time for the Seventh Annual Invest in ME International Biomedical Conference which will take place on 1st June - more details.

Can you help? Please take a look at the ways you can help on our How to Help page.

Are you able to donate? See the donation options here. 

Don't forget to sign up with Everyclick and Easyfundraising to raise funds for FREE while you shop online and search the web - more details can be found under RAISE FUNDS FOR FREE! here.

Please contact us at fundraising4me@gmail.com if you have any questions or suggestions for the campaign team.

Let's keep doing it for ME!

LDIFME bear meets..

The Let's do it for ME! bear has been out and about making new friends and raising awareness thanks to North East born performer, Jessica Robinson, who kindly invited him backstage at Middlesbrough's Little Theatre during her recent stint as Snow White in Snow White and the Seven Dwarfs.

Backstage at Middlesbrough theatre with Jessica

Jessica, 20, from Normanby, came fifth in the BBC programme Over The Rainbow, losing out on the lead West End role as Dorothy in Wizard of Oz to the eventual winner Danielle Hope in a sing off during the eighth live show.

Jessica received great feedback from the judges with Andrew Lloyd Webber describing her as a "world class star". She described her involvement in the TV contest as “a brilliant experience” and remains dedicated to achieving her goal of performing in the West End. 

A big thank you to Jess for taking good care of LDIFME bear and helping to raise awareness with these great pictures.

Meeting Claire King the 'Wicked Queen'

Backstage he also got to meet Bad Girls and Emmerdale actress Claire King, who starred alongside Jessica as the Wicked Queen. Bear wasn't scared at meeting the Wicked Queen, as he's a very brave little bear, but it did help that she wasn't wearing her fearsome costume. 

Thank you Claire for helping to raise awareness of the need for biomedical ME research!

LDIFME bear was last seen at Middlesbrough station boarding a train to London with Jess, and her many bags of luggage, as she returns to London and to her 2nd year of studies at Arts Ed. He is hoping to meet up with some more famous faces soon.. 

If you'd like a visit from LDIFME bear contact us at fundraising4me@gmail.com

Let's do it for ME!

LDIFME Bears are also available for adoption from our online shop. 

Free Shipping!

Free delivery is available on all orders over £30 from our Spreadshirt shops 27th Dec - 2nd Jan 2012. 

Make the most of the free shipping offer and choose your favourite products from the main LDIFME Shop and/or design your own LDIFME products in our Designer Shop. 

To apply the discount use the voucher code FREEDELIVERY at checkout.

Let's do it for ME!

* All profits from both our Spreadshirt shops go directly to Invest in ME towards the UK centre.

Thank you for your support!

We Wish You A Merry Christmas

Many thanks to everyone who has joined us in supporting Invest in ME's plan to establish the first UK centre for biomedical research and treatment and wishing you all a peaceful, joyful Christmas.

A big thank-you to all those who have so generously given of their time and talents during this season of goodwill by making, donating proceeds from, and buying greetings cards and calendars, handmade gifts and decorations, gifts from our on-line shops, and raising funds for free when searching the web and shopping on-line, as shown in our post Christmas Gifts 4 ME!

So far you have helped us raise £24,656 for Invest in ME and the UK centre!

There is still time to make a Christmas Gift Donation to our festive fundraising page Gift4ME - which will remain open up to 31st December.

You can now also Donate By Text:

Text IBRF33 and either £2, £5 or £10 to 70070
e.g. IBRF33 £5

All the very best,

Let's do it for ME!

100 Birdies 4 ME!

Diana Hamilton is aiming to sell 100 of her lovely handmade birdies to help raise funds for the UK Centre of Excellence by donating 50% of her profits to

Invest in ME's Biomedical Research Fund.

 Diana says:

"The idea for 100 Birdies 4 ME came about in early September; I had just joined a local craft group who were looking to take part in Light Night Leeds 2011 buy making 3 'gardens' out of various crafts, and at the same time I had heard of the Let's Do It For ME fund-raising campaign to raise money for a biological research centre focusing on M.E.

As with all good ideas, the idea to create something for the craft gardens that could then have a 'higher purpose' after the event just evolved. I had to make something for the craft garden that was easy to do, portable (read: able to be done from bed/sofa!) and would be unit based, so that I could manage to do it as I was recovering from a bad M.E flare during the summer myself. I spent lots of time on my days stuck in bed researching online projects and looking on Pinterest for inspiration. And then one day, I found some small felt birds which hung on a loop of ribbon and bingo! It was the perfect idea.

I have spent the last few months up to the eyeballs in felt cut outs, ribbon and stuffing but I have thoroughly enjoyed making them. I have found my own health improving as I have been making birdies, and have felt like I have a purpose even though housebound for the majority of the time.

I set myself the target of making and selling 100 birdies – the total made so far is at 40 but I have only sold 22 of these so far. I really don't know if I will manage to make 100 before Christmas, but I plan on keeping the project going until I have reached my goal.

I wholeheartedly support what Let's Do It For ME! and Invest in ME are doing, it is about time that some proper research was done into M.E so that we can find a cause and cure the thousands of people who are just forgotten about and left to cope with a devastating illness with little medical intervention".


Click here to see and order the birdies.

You can find 100Birdies4ME on Facebook.

Of course, you can also follow the birdies on Twitter @100Birdies4ME

Many thanks to Diana and all who choose to give her Birdies a home.

Would you like a Birdie for Christmas?

Let's do it for ME!

UPDATE

As at 16th February 2012, these lovely birdies had raised £64.60 + £16.15 for ME!  You can see Diana's donation to Invest in ME on our fundraising page on Everyclick.

Photo of the Month - November

We are delighted to announce James as winner of November Photo of the Month!

James with Bob

 James said:

"Thank you for choosing my picture, that's me James (14) with Bob my little Yorkie. My mum has had M.E. for the past 11 years and has to go out in a wheelchair when she feels well enough. She can't do many normal things and she wasn't able to come on holiday with me and dad as she was too ill, but she likes to sit in the garden in the sunshine. I hope you reach your target of £100,000 so that people like my mum can get treatment one day."

The first winning entry for the competition aimed at getting our photo album off to a flying start was announced last month. It was so great to see supporters of our campaign that we decided to extend the competition as a regular Photo of the Month event, with previous entries remaining eligible for a winning prize selected from our online shop.

You can see our photo album and choose a sign to show in your photo here.

Please keep sending us your photos at fundraising4me@gmail.com and we will announce December's winner early in the New Year.

Many thanks to James for sending us his winning photo and our best wishes to him and his family - including Bob of course - for a Very Happy Christmas and New Year!

Thank you so much for your support!

New Designer Shop

When the kind people at Spreadshirt saw that our shop is raising funds for Invest in ME they took it upon themselves to upgrade us to a premium account for free. This charitable gesture means we can now offer you the opportunity to create your own products using LDIFME designs. The new 'Design Your Own' Shop means you can choose any item sold by Spreadshirt, in any colour, and add a LDIFME design, as well as other designs and text of your choice. You can choose from a selection of miscallenous free* designs from Spreadshirt as well as upload your own images or photos. As with all Spreadshirt Designer Shops, 20% is taken in commission which of course will go directly to Invest in ME.

The LDIFME Designer Shop can be accessed via the header of our the main LDIFME Shop or visited directly at http://designerme.spreadshirt.co.uk/

So now you can size and place designs yourself, and customise items to your own individual taste and style - or maybe that of a friend or loved one? If you wish to purchase a gift from either of our Spreadshirt shops for Christmas, your order must be placed by December 17th to guarantee delivery. 

So check out our new shop and/or revisit our original shop for some ME related goodies which will raise funds for Invest in ME and the UK centre.

Also visit Carmel Hillary's Cafepress ME Awareness shop for a great variety of ME products, featuring a wide range of designs. All funds from Carmel's shop also go directly to Invest in ME and towards the UK centre.

For further ME awareness and fundraising items see our Christmas Gifts for ME post.

Let's do it for ME!


* Free means no commission is taken by the designer, you will be charged the standard printing costs by Spreadshirt.