27 December 2012

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
Pack 2

*  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* 

21 December 2012

A Charity Christmas Gift for ME

For an easy way to request a donation to Invest in ME for Christmas send this link to Santa Claus, or add it to your Wish List..

This Christmas, I am supporting a very important and worthy cause.

Myalgic Encephalomyelitis (ME) is a multi-system neurological disease.  Anyone of any age can get ME, including very young children. Some are so severely-affected that they cannot speak, swallow or even sit up in bed.  There is no cure.  The severity can vary and fluctuate over time but full recovery is rare.  There is no medical test for ME and a large number of people are misdiagnosed. This all needs to change.

My Christmas Wish this year is to help the UK charity Invest in ME (charity number 1114035) to raise £100,000 towards biomedical research at a centre in UK where patients with myalgic encephalomyelitis may be correctly diagnosed and participate in studies using the latest scientific thinking and most advanced technology in the hope of finding a cure for ME.

Thank you for helping by donating a Christmas Gift for ME!

Please click here for ways to Donate.

* Remember to tick the Gift Aid box or use the Gift Aid form if you're a UK taxpayer so that Invest in ME can claim an extra 25% of the amount you donate from the government!*

To tell someone you have made a gift donation in their name you may like to send this note.

"Let's do it for ME!" is a patient driven campaign in support of Invest in ME and is run in close cooperation with the charity.  Everyone involved with Invest in ME performs their work for free and all funds raised for this cause go to the Invest in ME biomedical research fund.

Please see our main website for full details and ways to help.

The LDIFME 2011 Xmas logo is a re-working of the LDIFME logo using a snowflake design by Chris Spooner.

14 December 2012

Last minute presents? …….Teds and Tugs!


How can you resist this cutesy little bear?  Perfect as a stocking filler or even as a treat for yourself, each bear comes complete with its very own ‘Let’s do it for ME’ snowflake T shirt and handmade fleece scarf and hat in baby blue.  Their legs and arms are jointed so they can stand (5” high), sit and even wave!  Bears cost just £3.50 each.
Or perhaps something for your canine friend?  Handmade tug toys!  The tugs are made from fleece (gentle on dogs' mouths and stretchy) and are machine washable.  Each has a handle for pet owners to hold to get a better grip.  They measure around 22" slack and 29" when stretched. Although called tug toys they’re great for wiggle and chase. They can even be used as part of agility training - and at £2.00 each they’re a snip!   
Every bear and tug comes with a Christmas greeting label.
Postage and packaging is as follows:
Up to 2 items £2.90 1st class or £2.40 2nd class; up to 4 items £3.00 1st class or £2.50 2nd class.
To place an order please contact Annabel Luery either by email annabel.luery@tiscali.co.uk or message her on Facebook.  Payment by PayPal preferred.
But hurry – only limited stock available!
All profits from the sale of these items will go towards the ‘Let’s do it for ME’ £100K campaign target (see leaflet for more details).

8 December 2012

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

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*

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
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

1 December 2012

Bernice Summerfield: Many Happy Returns Out Now!

Posted by Big Finish Productions 30th November:

"Following the recent release of Doctor Who: Love and War, Big Finish is pleased to announce that a special Bernice Summerfield charity adventure - Many Happy Returns - is now available to download.

Celebrating twenty years of the popular archaeologist character first introduced in the Doctor Who New Adventures books, one-off drama Bernice Summerfield: Many Happy Returns reflects elements of Bernice's entire life and reunites her with a whole host of familiar faces.

'I was overwhelmed by how many people wanted to be involved with the project,' says producer Scott Handcock. 'Not only actors, but writers, sound designers, Toby at the Moat Studios - everyone! Everyone gave their time for Jac Rayner and her charity, Invest in ME, and this adventure has been truly worthwhile to pull together on every level!'

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, focusing on immunology and virology.

The hundred-minute adventure is available to download now, and every penny from sales will go to supporting Invest in ME and its projects. Click on the
product page now to order, and for full details of the cast and crew who have come together to celebrate Bernice's birthday!"

"Bernice Summerfield: Many Happy Returns" is featured on the LDIFME website here , you can also see photos of some of the lovely people involved meeting LDIFME Bear here.

Jac Rayner is a core member of the Let's do it for ME Team.  She said,

"Invest in ME have been busy creating hope, and now Big Finish have gift-wrapped little bits and put them in our Christmas stockings. Thank you so much to everyone who has worked on, bought, or otherwise supported this project. You’re great." 

To help celebrate all these achievements and raise ME awareness, Jac has devised a competition, click here for details and the prizes on offer, closing date is 5th December.

A big THANK-YOU to everyone involved at Big Finish from the Team at Let's do it for ME!

ps. Barnaby-Eaton Jones is also a fellow member of the Let's do it for ME Team. His audio play about ME, available for download and on CD, was released earlier in November and is featured on our website here, "Running To Stand Still".  Many thanks to all involved! 

20% off Spreadshirt Offer ends 2nd December

From 30th of November to 2nd of December, Spreadshirt is giving 20% off every order!


Proceeds go direct to Invest in ME's biomedical research fund.

Let's do it for ME Shop on Spreadshirt

Let's do it for ME Design Your Own on Spreadshirt

Carmel's ME and FM Awareness Shop on Spreadshirt

To guarantee that you receive deliveries by Christmas (standard delivery), you need to have ordered AND paid by:

UK: 14/12/2012

Germany/Austria/Switzerland/France/Italy/Sweden/Spain/Finland/Poland: 14/12/2012

Norway: 07/12/2012

Please note that the periods are non-binding. Depending on order volumes, delivery times and production capacity, Spreadshirt may have to reschedule the order period. Keep checking their blog to find out more about delivery periods.

Ordering Deadlines for Christmas 2012 - from Spreadshirt:

"We usually receive a large amount of orders before holidays. We ask you to please understand that the processing times may take longer than normal. Please note our deadlines for Christmas orders:

Ordering Deadlines for Europe:

Shipping Type

Guaranteed Delivery for Orders Made


at the latest Friday, 14.12.12 , at 11:59 pm (CET)


at the latest Tuesday, 18.12.12 , at 11:59 pm (CET)

Note : guaranteed delivery only refers to payments made by credit card, direct debit

or PayPal."

Spreadshirt strives to process orders and ship as quickly as possible, but they have no influence on external providers' delayed delivery times .

Important : guaranteed delivery only refers to payments made by credit card, direct debit or PayPal.

For bank transfers, they can only begin printing your shirt once we have received payment. This is usually 3-7 extra days for online bank transfers.