December Updates

Total Raised so far - £73k!

*  We do hope you able are able to enjoy the best of the festive season this year. 

*  Thanks to the help and hard work of so many wonderful supporters, we are now over 70% on the way to the £100k target!

 *  Who could resist our adorable little LDIFME Teds all dressed up for winter – limited stock of this exclusive design. Handmade tug toys for your canine friends are also available. Click here for details of Teds and Tugs - many thanks to Annabel Luery!

*  Jane Hurst's Photocards make great gifts all year round: "Hi, We have put together some more photo cards. All photos featured were taken by friends and family all of whom, like myself have ME. The cards are printed on quality card and make lovely gifts, Thank You Notes, birthday cards etc. They are sold in aid of Invest In ME and The 25% ME Group. Cost is £3.99 per pack of 5 or £1 each. Postage is 75p per pack. You can pay by cheque or Paypal, just PM me for more details. Thanks ever so much."
Pack 1
http://www.facebook.com/media/set/?set=a.156767279186.145229.639834186&type=3
Pack 2
http://www.facebook.com/#!/media/set/?set=a.156759794186.145225.639834186&type=3

*  If you have any friends or relatives who would kindly take a charity collection box to work or host a coffee and mince pie morning or New Year Party or have other ideas to support us by raising awareness and a few extra £1s during the festive season, that would be wonderful.

*  Invest in ME placed another advertisement in London Business Matters for December and January, in time for Christmas and New Year.  The ad highlights one of the research projects that we are helping to raise funds for. The ad first appeared in October and this time it is supplemented with an "editorial" piece about ME featuring Rosa's 21st Birthday Appeal.  Click here for details.

*  The Invest in ME elves have been snowed under, busily packaging the superb Christmas cards and 2013 calendar, produced by Let's do it for ME supporters, and posting them out across the globe. The cards include a message about Invest in ME and Let's do it for ME on the back and the A5 size is handy if you want to include an IiME or LDIFME leaflet as a bit of extra ME awareness-raising, and also guarantees that they will be noticed when on display. The calendar has a factual quote about ME at the foot of each page to keep awareness going throughout the year and so would make an ideal gift to be displayed at your health clinic or elsewhere on public view, and why not send a card to your health professionals and local MP too? Many thanks to all involved in the Christmas card photo competition and contributors to the calendar, with special thanks to Julia Cottam for all her hard work on organising and coordinating the cards and calendar project. Click here to order - repeat orders are coming in as people are so pleased with the quality.

*  To see the wide range of other cards, decorations, and gifts produced in aid of our worthy cause, please see the Christmas Shop on our sparkly new website created over several months by Let's do it for ME campaign co-founder, Jan Laverick. Links on the page include the gifted supporters who make up the ever-expanding team of crafters of all ages, led by Jon Watson. The more the merrier so please contact us or Jon if you would like to join in. Jon has also been running Make ME Crafts stalls at local events and the last before Christmas was on Saturday 15th December 2012 from 09:00 – 17:30 at Love Southsea Christmas Market, Palmerston Road in Portsmouth. Jon's ingenuity, hard work and unfailing enthusiasm is truly inspiring and we are really grateful to all who support his efforts, and those of the rest of the team.

*  The 1st of the month is the day on which we hope that as many supporters as possible will take us a few steps closer to our goal by donating just £1.  What a great way to herald in the New Year by inviting your friends and family to join this event on 1st January.  Every £1 counts so please share the link to the One Day - One Pound page widely as it is a monthly event and will continue throughout the coming year.

*  November saw the release of not one, but two, brilliant audio plays with all those involved in both projects having generously donated their time and talents so that every penny of the proceeds go to Invest in ME! Writers Jac Rayner and Barnaby Eaton-Jones are both members of the Let's do it for ME team and were the instigators of these projects in aid of Invest in ME. We are quite simply blown away by the extraordinary kindness and support they have received and we cannot thank them and their fabulous friends and supporters enough for their amazing dedication to the spirit of our campaign. You can find out “who's Who” and more besides about the Big Finish audio download “Bernice Summerfield: Many Happy Returns” on our website here, and about Barnaby's audio play “Running To Stand Still” here. Jac also ran a competition for extra ME awareness-raising, which closed on 5th Dec. Details on her blog here.

*  1st November marked two years since the lifetime ban on blood donation by anyone who has had ME and the brilliant ME Awareness track “I Can't Stand Tha Rain” by Mama Chill and featured on our website here, raised £50 for a Halloween event, many thanks to Mama Chill, aka Stacy Hart! 

*  Young Harrrison Honey got November off to a great start by creating his Just Giving page. He wrote, “Although it has been a year since I was in hospital due to M.E. I am still struggling with this awful misunderstood illness. I am still not in school and I want my life back as I knew it. I know many other children who are suffering with this illness too and I am in touch with them. They are also missing out on so many things like me. This is such a great cause, raising money to find a cure!!” We loved his update, “OMG, Speechless. After only the 2nd day of advertising my page I have already reached my target !!!! I have increased this now to £300 (double what I had originally hoped for). Thank you to everyone who has donated already. Harri =) Do take a look at his page here to see his latest update and the amazing amount he has been raising. Well done to Harri and many thanks to all his supporters and more news to come!

*  Young Maddi Kent and her wonderful family previously featured in a Make ME Crafts blog and have now raised over £1,000 including Gift Aid, through “Maddison's Bracelets”. We were deeply saddened and shocked to hear that the family has been struck by tragedy. Tristi posted this message on the Invest in ME Facebook group, “ just a quick message for those of you that havent heard. my eldest daughter (Maddi's elder sister) was on the pavement and hit by a drunk driver just over 2 weeks ago and had to have her leg amputated. hence things have been awful here and myself and maddi have had to put our ME fund raising on hold for now. when we can we will restart. in the meantime everyone keep up the amazing work you have been doing :) xxxxxxxxx” Our love and thoughts are with the family at this difficult time.

*  As said above, November also marked the 21st birthday of Rosa Amor. Severely ill and currently in a nursing home being fed by tube, Rosa was unable to celebrate in the usual ways that others of her age might, so instead she chose to use her special day to raise awareness and funds for the cause so close to her heart. We wrote about Rosa's 21st Birthday here - now updated as Rosa's Appeal is featured in an "editorial" piece about ME accompanying an ad by Invest in ME in London Business Matters magazine.  Rosa's Appeal is also in pdf here. The staff at the nursing home joined in with a pyjama day with all proceeds to Rosa's appeal and thanks to the support and generosity of a number of people, over £1600 was raised on the Just Giving page including Gift Aid. Goodwill messages were posted across the social networking sites and some people used Rosa's photo as their profile picture for the day. Her mother Julia said, “Rosa's Appeal has surpassed all our expectations. Check out the link to see her amazing total and all the different people who have supported her. We are so grateful to everyone.” Many thanks to Rosa and her family for their staunch support in helping to make hope a reality.

*  The above are some examples of all the amazing efforts to support our campaign, please email us at fundraising4me@gmail.com if you would like yours to be added and do keep checking as we hope to add news as it comes in throughout the month and to make our summary of updates a monthly feature. For all information about the Let's do it for ME campaign for Invest in ME, please see the main website and especially the Christmas Shop page! Thank you so much for your support - Let's do it for ME!

*Everyone at Invest in ME perfoms the charity's work for free and all involved in the Let's do it for ME campaign are also volunteers, either with ME themselves or parents/carers or generous supporters, giving their time, talents and their own money to support this vital cause* 

Rosa's 21st Birthday Appeal - December Update


Rosalind Amor has been an enthusiastic supporter of the Let's do it for ME campaign since its launch in the summer of 2011, as one of the first members of the online planning group and also of the Make ME Crafts team, as in spite of severe illness, Rosa crochets soft wool blue awareness wristbands when able to for Invest in ME. We wrote about Rosa's Wristbands in March 2012 and she raised over £100 for ME Awareness Month in May but by July her hands had become too weak to crochet. Following a decline in health, Rosa spent most of August and September in hospital, transferring to a Nursing Home where she is being fed by a naso-jejunum tube.

Rosa turned 21 on 9th November and, in her usual inimitable fashion, she had a very clear idea as to how she wanted to mark this significant birthday. She planned to use her 21st as an appeal for our campaign to raise funds for biomedical ME research at the centre of excellence in Norwich proposed by Invest in ME. Rather than sending her cards and presents, Rosa asked her family and friends if they would raise awareness and money for the cause which is so dear to her heart. She had said in July, “I so wish we could get this centre running, I need it!"

For the occasion, Rosa's mother Julia prepared party bags containing a blue balloon, a LDIFME badge, ME awareness poster, leaflets and a card in which Rosa tells her story.   The staff at the nursing home joined in with a pyjama day with all proceeds to Rosa's appeal and thanks to the support and generosity of a number of people, over £1600 was raised on the Just Giving page including Gift Aid. Goodwill messages were posted across the social networking sites and some people used Rosa's photo as their profile picture for the day.  Julia said, “Rosa's Appeal has surpassed all our expectations. Check out the link to see her amazing total and all the different people who have supported her. We are so grateful to everyone.”

Invest in ME is running an advertisement in London Business Matters (LBM) for December and January, reaching 18000 people in business in London in time for Christmas and New Year. The striking ad highlights one of the research projects outlined in the proposal for the patient examination and biomedical research centre, to determine whether changes in gut microbiota contribute to ME.  First placed in October, this time the ad is supplemented with an "editorial" piece about ME and severe ME, featuring Rosa.  Invest in ME wrote on their Facebook group:

"We would like to thank Rosa for her recent appeal and Julia for agreeing to let us use Rosa's story to raise awareness.

We wish to thank all of those making huge efforts to support us and enable biomedical research into ME and thereby increasing awareness of ME.

As we have seen from recent news in Norway (no public funding granted for a Phase III trial of the promising drug Rituximab in ME patients) we, the patients and carers, will have to take control of this state of affairs and make research happen.

This is the reasoning behind our Norwich proposal - see http://www.investinme.org/Research%20-%20ME%20Institute.htm

We are nearing our target to initiate our first project.

We will continue to progress and facilitate collaborations between researchers.

With other members of the European ME Alliance we will work together to make ME a properly researched and treated disease.

Let's Do It For ME."

Please see links for the ad below*

Rosa's 21st Birthday

9th November 2012

All I want is to be like other 20 year olds; to travel and go to uni; to socialise and be independent; to walk, swim, dance and ride. I've already lost a decade of my life to this wretched illness. Please don't let me lose another.

I've had ME for 12 years. Before that, I was a healthy child. I was always playing; I loved Puppy and Kitty in my pocket sets; I went to ballet and modern dance lessons, swimming, watch club, was learning the violin and was a junior member of the RSPCA.

When I was eight my grandma and hamster died in quick succession, followed by a unknown virus of the gut. I had a terribly high temperature and was sick on everything, even water. Unfortunately, I didn't recover. I was diagnosed with ME quite quickly but sadly, this didn't make my treatment any better. I was admitted to hospital and given physio, then sent home and relapsed terribly.

I don't remember the following year. I know I lived on Complan all that time until we finally persuaded our doctors to give me a tube. I was admitted to hospital again for a few months - a painful experience.

I was paralysed and bed-ridden for 7 years and was tube-fed for 5 and a half. I remained at home, cared for by my parents. My symptoms included; paralysis especially my legs and swallow, hypersensitivity, headaches, muscle pain, 'brain fog', muteness, orthostatic intolerance, insomnia, spasms, severe nausea with a period of vomiting and extreme tiredness.

At 15 my health dramatically improved. I was able to stand and use a wheelchair. Briefly, I was even able to walk independently around the house though still needed a wheelchair outside. I became involved with my local wildlife trusts, visiting their reserves, attending 'wild learning' courses and part of a youth group.

However, from the end of 2009 my health slowly worsened again until last year, when I had a tooth infection and a bad back, I had a major crash. My worst problem this year is vomiting which worsened my tiredness, hypersensitivity, cognitive functioning and insomnia.

I always believed that one day my body would naturally heal itself and I'd return to my previous levels of health. Now I'm less confident of recovering unless someone finds a treatment.

How you can help to celebrate Rosa's 21st:

• Put up an awareness poster where lots of people will see it

• Wear the Let's do it for ME badge

How to donate:

• Online to Rosa's Justgiving Page by visiting www.justgiving.com/Rosa21

• Send a cheque payable to Invest in ME to:

Invest in ME,

PO Box 561

Eastleigh

Hampshire

SO50 0GQ

Please write 'Rosa's Appeal' on the back

• Make a direct payment to Invest in ME -

Bank: Lloyds TSB Eastleigh

Sort code 30-92-94

Account number: 02252685

Please mark your donation 'Rosa's Appeal'

To find out more about the Let's do it for ME campaign and other ways to help visit ldifme.org

To find out more about Invest in ME visit www.investinme.org

To read about Rosa's Wristbands http://blog.ldifme.org/2012/03/rosas-wristbands.html

You can read more of Rosa's experiences in her own words and including private lab tests that showed mitochondrial dysfunction on her blog  www.rosalindamorspaceofameguineapig.blogspot.com

Sending our love and every good wish to Rosa for her 21st birthday from the team at Let's do it for ME!

Thank-you for your support.

(click here for Rosa's 21st Birthday Appeal in pdf).

* Links for the ad on Invest in ME website here - :http://www.investinme.org/IIME-Newslet-Dec12-02.htm

* The Invest in ME ad is on page 51 here - http://www.londonbusinessmatters.co.uk/archive/2012-12/#/50/

* Please especially read the special supplement on page 40 here - http://www.londonbusinessmatters.co.uk/archive/2012-12/#/40/

* The jpeg of the article here - http://www.investinme.org/Documents/ME%20Awareness/LBM%20Dec2012/Invest-in-ME-Rosa-2a.jpg

* The latest ad spans December and January. The ad in Coventry & Warickshire covered November/December. The previous LBM ad was in October - so it will have had 4 months of coverage - http://www.investinme.org/medianewspapers-2012-10-01.htm

Let's do it for ME is a patient driven campaign in support of Invest in ME's proposal to establish the first UK centre of excellence dedicated to translational biomedical ME research and patient care.  All funds raised are for the research.  Please see our main website for full information and to see how you may become involved in helping to frame a future for proper recognition and treatment of this disease.

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

For other news of our campaign please see December Updates

The Big Sleep for M.E. has arrived!

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

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

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

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

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

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

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

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

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

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

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

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

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

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