LDIFME Shop Now Open – with free delivery 29th - 30th October!

We declare the LDIFME Shop is now open! The LDIFME shop provides a range of products for both awareness and fundraising. All proceeds go to Invest in ME.

For each accessory (mugs, badges etc) and every item of kid's clothing purchased, £1 goes to Invest in ME. For each item of adult clothing purchased £2 goes to Invest in ME. If you wish to donate more than this amount, you can do so here – we have added these details to the product description for every item. 
We plan to add further items to the shop to include the Invest in ME logo, but are waiting for the use of the logo to be approved by Spreadshirt (as it is Copyrighted). You may wish to wait until these items are available to place your order. Unfortunately we cannot give a date by which they will be made available, as this is out of our hands. 

If you place your order 29th - 30th October you will qualify for free shipping. Use the voucher code WITCHINGHOUR at check out to apply this discount.

The best way to find out more is to visit the shop.


*The Let's do it for ME! awareness and fund-raising campaign is run by ME sufferers in close cooperation with the charity Invest in ME. Your donations go directly to Invest in ME and towards the UK research centre. See this campaign highlighted on the Invest in ME website here.

Amy's Sponsored Screen-Free Weekend!!

Last year, Amy kindly raised funds for Invest in ME with a sponsored silence. This year, she is going screen-free for a whole weekend – very valiant for someone who largely relies on screen technology for contact with the world outside her home. 

Amy says:

“Hiya, my name's Amy, I'm 29 years old and I have been ill for 8 years will a severe illness called 'Myalgic Encephalomyelitis' or M.E. for short. M.E. has robbed me of so much of my life and affected me so greatly that I am now housebound and often bedbound with severe symptoms.

UK charity Invest in ME are planning to set up a specialist treatment and research centre for M.E. suffers here in the U.K. which could treat patients and offers us real hope, so myself and many of my friends are trying to help them raise as much money as possible to make this happen.

Because I'm so ill, I'm limited by what I can do to raise money, no marathons or bungee jumps for me sadly!! So instead I have decided to do a screen free weekend from the 11th to the 13th of November. That will be 48 hours with no TV, no pc and no internet!! Which for an internet addict like me, who lives alone, will be really hard, but totally worth it!

It would be really appreciated if you could sponsor me, and also let your friends know too.”
Amy also bravely shared the full account of her life since contracting myalgic encephalomyelitis for October's Monthly Story on Becoming Visible 4ME - click here to read more about Amy.

Amy's fundraising page is here on Everyclick.


Thank you so much Amy and her sponsors for your support!

Let's do it for ME!

UPDATE:  Amy raised £764 on her Everyclick page - 153% of her target! 
                    Thanks so much to Amy and all her generous sponsors!!

Click here to read about Annabel Schleutker's Screen-Free Weekend.

*This awareness and fund-raising campaign is run by ME sufferers in close cooperation with the charity Invest in ME. Your donations go directly to Invest in ME towards the UK Centre. See this campaign highlighted on the Invest in ME website here.

World Premiere of Voices from the Shadows

Today, Saturday 8th October 2011, sees the world premiere of Voices from the Shadows - a ground-breaking documentary film about ME at Mill Valley Film Festival in California.

By special arrangement with Mill Valley and in cooperation with MUBA, those in North America can watch the film on-line, free of charge, until 30th October, but you will not be able to download it for later viewing. Two UK screenings in Norwich and London in December have been arranged by Invest in ME. Please click here for details.

We believe that viewers may find this film intensely moving, compelling and also informative, but please be warned that it may be tough to watch if you have severe ME yourself as it brings home the heart-rending reality of the illness.

Please also note that it is not suitable for viewing by children with ME.

The film has been made by the brother and mother of a severe ME sufferer. Josh Biggs is a professional freelance editor and cameraman. Natalie Boulton was an artist/teacher and is a full time carer for her daughter who has been ill for over 20 years. Both are first-time directors and producers. The music for the film was written and kindly donated by Emmy-nominated composer David Poore. 

"Voices from the Shadows is the most important and significant film on pediatric ME that has ever been produced" – Prof. Leonard Jason.

“The film foregrounds the riveting stories of several British families confronting what must be everyone's worst nightmare: a loved one suffering a life-altering illness that leaves him or her bedridden and in constant pain, with no apparent cure.

But what if the medical establishment made the situation worse instead of better? Such are the heartbreaking circumstances of the under-reported controversy surrounding ME (myalgic encephalomyelitis), aka chronic fatigue syndrome.

First-hand accounts from patients, caretakers, and medical experts paint a shockingly confused state of affairs—and underscore the urgency and frustration around this issue. A call to action for anyone who cares about the health and well-being of their community, this powerful film is equally a tribute to those whose voices must be heard.”
—Atissa Manshouri

Presented in association with UN Association Film Festival

There will be a panel discussion following the screening with invited guests:
David Tuller, lecturer, Graduate School of Journalism at UC Berkeley, frequent contributor to The New York Times.
Natalie Boulton, filmmaker, Voices from the Shadows
Dr. Jose Montoya, associate professor Stanford School of Medicine

Screening: Sat. Oct 8th, 2011 @ 2:00 PM - Smith Rafael Film Center, San Rafael, CA.

Running time: 63
Country: UK
Category: DOCS
Directed by: Natalie Boulton and Josh Biggs
Directors/Producers/Editors: Natalie Boulton, Josh Biggs
Cinematographer: Josh Biggs
From film festival website.

UPDATE

Voices from the Shadows is now available for those in USA and Canada to view online on MUBI and for those in UK/Europe, Australia and New Zealand to buy on DVD.  You can watch the trailer here.

To raise awareness, you could send these links to your MP or political representatives, your doctors and medical team, any other professionals you have personal contact with in education or social services, as well as local and national media.

Voices from Shadows is a development from the highly-recommended book Lost Voices.

Photo Competition Update

Thank you to all those who have sent us photos to be included in the LDIFME album, as part of our Show Us Your Best Side awareness event and photo competition, so far.

We now have signs available for use in groups and at fund-raising events, and which include the Invest in ME logo - highlighting that all funds raised go directly to the charity.

We have received some lovely photos, but need many more - so please don't be shy!

Send your photos in to us at fundraising4me@gmail.com, along with your name, age (if under 16) and any other details you are happy for us to share publicly.

If you are under 16 please seek permission from a parent or guardian before you send in your photo(s) and provide us with their contact details (Name, Address, Telephone No. and Email Address) as we cannot use your photo(s) without this permission.

And don't forget there's a prize in it for the most inspired photo! For the full details of our competition, see our previous post here.

*The Let's do it for ME! awareness and fund-raising campaign is run by ME sufferers in close cooperation with the charity Invest in ME. Your donations go directly to Invest in ME towards the UK Centre. See this campaign highlighted on the Invest in ME website here.

Joyce's 50th Birthday Gift for ME!

 Joyce says ..

"I hit my half century this October 7th! The big 5-0!

Scented hankies? Bubble bath? Not this time please! Here's why: I'm celebrating my big milestone birthday by asking people to donate whatever they're able to 'Invest in ME', an independent UK charity raising funds for real bio-medical research into this devastating illness.

M.E. has robbed me of huge chunks of my life. M.E. affects the lives of 250,000 others in the UK alone. 'Invest in ME' hopes to open a UK Biomedical Research and Examination Centre for M.E. in Norwich, UK.

This will mean hope for effective treatment and an eventual cure for this disease. This is my dream and my prayer for all my fellow sufferers.

I was diagnosed with M.E. in 2006 after becoming very ill after the flu jab the previous year. Since becoming severely ill with giardiasis while working in Bolivia in the early 90s, I'd been ill in a 'boom and bust' pattern for more than a decade. I always tried to push myself beyond my limits working as a Methodist Minister. I'd wrongly put my exhaustion, pain and sickness down to my type 1 diabetes, constant viral infections and three bouts of shingles!

My collapse on 24th October 2005, on my way to lead family worship at one church where I was minister, finally convinced doctors that something much more serious was happening in my body. Over 6 months later after endless tests, M.E. was diagnosed: basically, a chronic neurological and immune illness that is relapsing-remitting like MS. After nearly four decades as an internationally recognized and categorized disabling neurological disorder, ME/CFS is still one of the most underfunded, maligned, miscategorized life-altering illnesses of our time.

I was largely bedbound at that time and now still housebound at times. I'm thankful that I have "better" days along with the really bad days now. Strict pacing of energy can help, sometimes, but not cure. M.E. means my body can't recharge its batteries after the least effort of muscles or concentration. This leads to disabling symptoms that make it terribly difficult to function a lot of the time. Made worse by my dodgy immune system imploding at any passing virus that shows its face!

But M.E. can never destroy my wacky sense of humour! It can't have who I am inside! I've so very much to be thankful for, to laugh about and to share. Can we make the big £5-0-0 to celebrate my big 5-0? Let's do it for ME!

Thanks so much to all my lovely friends, family, followers and well-wishers everywhere! I love you! XXX"

Happy 50th Birthday Joyce!  Many thanks for your wonderful birthday gift and to all those who are so generously helping you to celebrate in style!

Joyce also has a blog and you can follow her on Twitter - for links and to help Joyce achieve her birthday wish, see her fundraising page here on Everyclick.


 

*The Let's do it for ME! awareness and fund-raising campaign is run by ME sufferers in close cooperation with the charity Invest in ME. Your donations go directly to Invest in ME towards the UK Centre. See this campaign highlighted on the Invest in ME website here.

Invest in ME is Viking's Cause of the Month!

Hurray! You did it - many thanks to all who voted!

From the easyfundraising blog:

“Well done to Invest In ME who are this month’s Cause of the Month and win a £200 donation from Viking”.

Thanks also to those who have signed up with easyfundraising to raise funds for free when you shop through their website - a free service where you can shop with your favourite online stores at no extra cost to you to raise funds for Invest in ME.

You still shop directly with each retailer as you would normally, but simply by using the links from the easyfundraising site first, each purchase you make will generate a cash back donation to the Invest in ME, instantly raising money for them.

Invest in ME has 256 supporters so far on easyfundraising, who have raised just over £640 for the charity so far for free. It's easy to sign up and start using straight away, so if you would like to join them click here.

People of all ages suffering from myalgic encephalomyelitis desperately need this centre for translational biomedical research and every little adds up so please ..

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





*The Let's do it for ME! awareness and fund-raising campaign is run by ME sufferers in close cooperation with the charity Invest in ME. Your donations go directly to Invest in ME towards the UK Centre. See this campaign highlighted on the Invest in ME website here.

Vote Now for IiME to Win £200!

Good news - Invest in ME was short-listed for Cause of the Month on easyfundraising - thank you to all who nominated them in round one - please vote now for them to win.

Voting closes at Midday (12 noon) on September 30th and the cause with the most votes fairly cast will win a £200 donation from Viking. No prizes for 2^nd place.

Please make sure you abide by their terms and conditions.

You do not need to have nominated Invest in ME in order to cast your vote now so don't worry if you missed out on the nomination stage.

You will need to sign up to easyfundraising if not done already – it's easy and it means you can raise funds for Invest in ME for free whenever you search and shop via the easyfundraising site.

Ready to cast your vote? Click here.

Let's do it for ME!

Thank you for your support!

*The Let's do it for ME! awareness and fund-raising campaign is run by ME sufferers in close cooperation with the charity Invest in ME. Your donations go directly to Invest in ME towards the UK Centre. See this campaign highlighted on the Invest in ME website here.

Show Us Your Best Side - Photo Competition!

*See our later post for a competition update and the new improved Let's do it for ME! signs - Photo Competition Update.

The level of support and enthusiasm for Invest in ME's proposal for a UK centre for biomedical research and treatment for myalgic encephalomyelitis, since Let's do it for ME! launched a few weeks ago, has been truly inspiring, and has given hope to many of the ME sufferers, their families and friends who have heard about it so far. This can be seen by the amazing comments left in our Guestbook, the donations made so far, and the many on-going fund-raising events set up to benefit it.

We wish to take this opportunity to thank everyone supporting this campaign, which aims to raise the £100,000 necessary to open the centre.

Our other aim is to generate publicity that will raise awareness of ME, the need for biomedical research, and the proposed UK centre - so we'd like to make sure that this support is as visible as possible. We feel the best way to do this is to enlist your help by asking as many supporters as are able to send us your photos.

There are no specific requirements - you do not need to suffer from ME yourself or have a loved one that suffers - the only requirement is that you support our campaign and Invest in ME's proposal for a UK centre for biomedical ME research and treatment.

Your help in making an invisible illness more visible will be greatly appreciated.

So, are you ready for your close up? Then send us a photo showing that you support our campaign!

To make it easy to show your support, we have made the following signs for you to print-out.

But we encourage those who wish to be creative to make your own signs or find other ways to show you support the campaign - it might be a photo of you at your fund-raising event for example.

There is no deadline for photos to be sent to us, as we'd like supporters to keep sending them in as the campaign progresses, but to help get our album off to a flying start the most inspired photo sent in by midnight 31st October will also receive a special prize. The winner will be announced early in November and will have a choice of Let's do it for ME! products, including a teddy bear, t-shirt or mug!

Send your photos in to us at fundraising4me@gmail.com, along with your name, age (if under 16) and any other details you are happy for us to share publicly.

We feel it is important to allow young people to show they are behind this campaign but if you are under 16 please seek permission from a parent or guardian before you send in your photo(s) and provide us with their contact details (Name, Address, Telephone No. and Email Address) as we cannot use your photo(s) without this permission.

Your photos will be added to the Let's do it for ME! web-album and displayed on our website. By sending us your photos you will be helping to raise awareness of a debilitating neurological disease that afflicts 250,000 people in the UK, 25,000 of which are children, and to give hope to sufferers, their families and friends.

So are you feeling inspired and ready to Show Us Your Best Side? Let's do it for ME!


Thank you so much for your support, we look forward to receiving your photos!
Team LDIFME

*For more details on the proposal for the centre see A UK Centre or download The Invest in ME Steering Group Proposal for a ME Research Facility. We will also have more details on the proposal and its progress soon. The Let's do it for ME! awareness and fund-raising campaign is run by ME sufferers in close cooperation with the charity Invest in ME. Your donations go directly to Invest in ME and towards the UK Centre. See this campaign highlighted on the Invest in ME website here.

Thinking of Lynn Gilderdale on her birthday

Today, we would like to pay tribute to the late Lynn Gilderdale in honour of her birthday.

Lynn was born on 20^th September 1977 in Burwash, East Sussex, later moving to the village of Stonegate with her loving family – her parents Kay and Richard and her older brother Stephen – and growing up to become, in her mother's words:

“everything you could wish for in a daughter: beautiful, bright, loving, accomplished, eager for life and all the delights it had in store for her”.

Kay's description of Lynn depicts a fun-loving little girl, full of smiles, laughter and chatter. With a lively imagination, she loved dressing up with her friends and cousins, making up stories and telling silly jokes, improvising make-believe radio interviews and plays in which Lucky, the family cat, often enjoyed a role, recording their play-acting on a cassette recorder. Though full of fun, Lynn also took her responsibilities seriously and was a prefect at primary school. She loved English, history and religious studies.

Lynn enjoyed the outdoors and being very active. Physically confident, quick thinking and fearless, she was a strong swimmer, enjoyed sailing and was captain of her school netball team. Lynn also loved modern dance, won prizes for ballet and took part in many school productions, including the Wizard of Oz and Alice in Wonderland, in which she played the White Rabbit. She also played the piano and clarinet and sometimes thought she might become a music teacher, but one thing Lynn knew for sure was that she wanted children of her own one day. She proclaimed:

“Family is the most important and precious thing in life”.

At age 14, Lynn became ill immediately following the BCG vaccination at school. While still unwell, she was struck by a bad bout of flu, swiftly followed by bronchitis, tonsillitis, glandular fever, and a chest infection. Lynn's immune system seemed unable to cope with this onslaught of successive infections and she was on strong antibiotics for months. She was later diagnosed with myalgic encephalomyelitis and sadly never recovered. After 17 years of very severe ME and with no further hope of recovery by that stage, Lynn passed away on 4^th December 2008 at the time of her own choosing, with her devoted mother Kay, as ever, by her side to comfort and support her.

Our loving thoughts are with Lynn and her family of this day 34 years ago, when Kay brought her beautiful, brave and inspirational daughter into the world to touch the lives and hearts of all who knew her and came to know of her. May this day be filled with memories of the happy times.

The full story of Lynn's life may be read in her mother's memoir:

“One Last Goodbye” by Kay Gilderdale

Published by Ebury Press

ISBN 978-0091939144

Click here to read some Amazon customer reviews.

Please ask your local library and local book shops to stock copies.

Currently available to buy in several stores and also on-line in paperbook or ebook format.

If you buy through the easyfundraising site, e.g. from Amazon or The Random House Group and choose Invest in ME as your cause, the charity will receive up to 2.5% of the price as a donation, with no extra cost to you.

Thank you for your support.

*The Let's do it for ME! awareness and fund-raising campaign is run by ME sufferers in close cooperation with the charity Invest in ME. Your donations go directly to Invest in ME towards the UK Centre. See this campaign highlighted on the Invest in ME website here.

Peter Amos BUPA Great North Run

Peter Amos has a relative with myalgic encephalomyelitis.  He said:
 
“I'm running in the Bupa Great North Run Sunday 18th of September and want to raise as much money as possible for Let's do it for ME in support of Invest in M.E. and their plans to open a Centre for Biomedical Research into M.E. in East Anglia, the first of it's kind in Europe.

Let's do it for ME is a patient driven initiative in support of Invest in ME and gives great hope to the estimated 250,000 sufferers in the U.K. 25% of whom are severely affected / bed bound. Also for the very many children and teenagers who suffer from this debilitating illness.

Thank you for your generous support,

Peter.”


UPDATE

Peter finished the run in a time of 2.03.49 and has raised £756 so far!

He has asked us to pass on a big thank you to all those who have sponsored him and for all the support and encouraging posts and comments.

Peter's fundraising page on Everyclick remains open until 31st October so there is still plenty of time to donate in support of his achievement.

Thank you so much to Peter and sponsors for doing this for ME!


To donate via Peter's page on Everyclick, click here.

P.S. When you make a donation, don't forget to check the Gift Aid box if you're a UK taxpayer as then your charity can claim an extra 25% from the government!



*The Let's do it for ME! awareness and fund-raising campaign is run by ME sufferers in close cooperation with the charity Invest in ME. Your donations go directly to Invest in ME towards the UK Centre. See this campaign highlighted on the Invest in ME website here.

Kathryn's Sponsored Silence

“My name is Kathryn Lloyd and I have suffered from severe M.E for 26 years from the age of 11.

I've spent many of those years bed-bound in a dark room, unable to tolerate light or any noise at all.

At my illest, I couldn't use my limbs, had to be fed liquid food as I couldn't chew, and I had to lie in one position for 6 years. I had to lie flat, as my blood pressure would drop so dramatically if I even raised my head that I used to start to get the symptoms of frontal lobe brain damage.

I also couldn't speak for 40 months and this is why I've decided to do a sponsored silence as it symbolises just how severe this illness can be.

I want medical evidence that will finally silence the barbarism I've had to put up with by doctors in the press suggesting my illness wasn't physiological. Not many people know as much as I do just how physiological it is. I also want treatments so I can be healthy again, as I was when I was a child so I can make up for the 26 years of my life I've lost.

This centre offers me both of these things and I will do everything to can to support it - please do everything you can too.

Love and hope,

Kathryn” 

Kathryn plans to hold her event mid-October but she won't hold her tongue for peanuts so to help her family and friends to reach her target you can sponsor Kathryn here.

Thank you so much for your support!

• UPDATE:  A huge thank you to all who have sponsored Kathryn's silence so far, including Houghton Round Table for their generous donation of £350!

*The Let's do it for ME! awareness and fund-raising campaign is run by ME sufferers in close cooperation with the charity Invest in ME. Your donations go directly to Invest in ME towards the UK Centre. See this campaign highlighted on the Invest in ME website here.

It's easy to nominate Invest in ME as Cause of the Month for September on the Easyfundraising site to win a £200 donation from Viking.

Here’s how it works:

1. Post a comment on the site to tell them about Invest in ME and why you think they should be Cause of the Month.

2. On Monday September 19th, they will announce a shortlist of 10 causes and ask you all to vote for the one you would like to win.

3. The voting closes at Midday (12 noon) on September 30th and the cause with the most votes fairly cast will win a £200 donation from Viking.

Please make sure you abide by their terms and conditions.

We will post news here if Invest in ME makes it to the shortlist on 19th and then needs your vote.

Click here to nominate Invest in ME for Viking's Cause of the Month on Easyfundraising.

Thank you for your support!

*The Let's do it for ME! awareness and fund-raising campaign is run by ME sufferers in close cooperation with the charity Invest in ME. Your donations go directly to Invest in ME towards the UK Centre. See this campaign highlighted on the Invest in ME website here.

Jan's Birthday Wish

Jan Laverick is a co-founder of Let's do it for ME! (round of applause and cries of for she's a jolly fellow!)

Jan contracted myalgic encephalomyelitis aged 17 and has now reached the grand old age of 29!

All Jan wants for her birthday is donations to help establish a centre for biomedical ME research and treatment in the UK.

All donations go directly to the charity Invest in ME via Jan's fundraising page on Everyclick and will count towards the total raised by Let's do it for ME! for the centre.

She says:

“All who know me know how ill this disease has made me, and some of you are also aware of the abuse I've received from doctors and of the general ignorance and neglect surrounding ME.
Seems I am turning 29 I have set the target amount as £290.

Big thanks!”

The closing date for Jan's birthday wish fund-raising page is tomorrow 5^th September so please show Jan your appreciation for all she does for fellow ME sufferers by helping to make Jan's birthday wish come true.

Click here to help make Jan show her happy face - it's worth a click just to see the photos!

P.S. When you make a donation, don't forget to check the Gift Aid box if you're a UK taxpayer as then your charity can claim an extra 25% from the government!

Matched Donation Total Reached!

What a fantastic response to our announcement on Sunday of the matched donation offer!
The total of £1300 as been reached already - doubled by our generous matched donation sponsors and with just under £600 courtesy of Gift Aid for UK tax-payers, you have raised £3,200 in just 4 days!

Together, we have raised just under £6,000 in the 6 weeks since this campaign was launched.

A huge thank you to all who have donated - and are continuing to donate in a variety of ways - and special thanks to the wonderful sponsors for donating the matched amount.
This is what some sponsors said on the Everyclick page over the past few days ...

“A great cause trying to achieve great things.”
“Not a huge amount . . . but hoping every little helps :o)”

“Gotta make the most of the match funding period, even if broke”

“Supporting REAL research into ME!”

“Fantastic initiative and so needed”

“Thank you so much Invest in ME & others”

“I just wish I had more to give! Thanks, IinME xx”

“The proposed research centre is a beacon of hope”

“Just what's needed!”

“I support this tremendous venture 100%”

“Fantastic cause worth every penny!”

“Good luck with this project!”

“Hope you reach the target.”

The matching period may have ended but for more ways to donate see How To Help

Thank you so much for your support!

Let's do it for ME!

*The Let's do it for ME! awareness and fund-raising campaign is run by ME sufferers in close cooperation with the charity Invest in ME. Your donations go directly to Invest in ME towards the UK Centre. See this campaign highlighted on the Invest in ME website here.

Announcement - Matched Donation Period!

Exciting news!

We have received a generous offer to match donations to the Let's do it for ME! fundraising page on Everyclick - £ for £ to a total of £1300 - for two weeks ending midnight Sunday 11^th September - or until such time as the total has been reached and starting ... NOW!

The £1300 does not include Gift Aid amounts for UK tax-payers so that could mean up to a further £650 from the government on top – a possible grand total of £3250 in just two weeks!

Please note that his matching period will apply to all donations made via Everyclick to the Let's do it for ME! fundraising page only, to make it easier to keep an eye on donations as they come in. The matched amount will be added at the end of the matched donation period.

Don’t forget to tick the gift aid box if you are a U.K. tax payer.

You can continue to donate by any other means - e.g. cheque or PayPal - over the next two weeks but only donations via the Everyclick fundraising page will be doubled during this period of time, so ...

Are you ready to double the value of your donations?

Let's do it for ME!

Once on  the Everyclick page ..
• hover over the green “Give Now” button -
• then click on the pink “Donate” button –
• this takes you to the secure donation process –
• your donation goes directly to Invest in ME via Everyclick.
  

Click here to have your donations matched £ for £ for the next 2 weeks!

While still on the Everyclick site, you could download the Give As You Live app and Easy Search to raise more funds for the Centre for FREE when you search the web and buy on-line.

Thank you so much for your support!

*The Let's do it for ME! awareness and fund-raising campaign is run by ME sufferers in close cooperation with the charity Invest in ME. Your donations go directly to Invest in ME towards the UK Centre. See this campaign highlighted on the Invest in ME website here and here.

Help Invest in ME Help You!

Invest in ME plan to open a centre of excellence for ME in the UK, the first of its kind in Europe. In order to achieve their goal of opening this ambitious research and treatment centre, £100,000 needs to be raised. Let's do it for ME! is a campaign run by sufferers, in cooperation with Invest in ME, to ensure this much needed funding is raised for the centre. The centre will use the correct and up-to-date diagnostic criteria and will work in cooperation with international researchers.


Here's how to Help Invest in ME Help You:

Please donate whatever you can. There are over 1600 members of Invest In ME's Facebook group, if 1000 of these members each raised £100 we'd be there!

Ways to donate:

• Donate to Let's do it for ME! via Everyclick. You do not need to sign up to donate, simply click the green 'Give now' button on our fundraising page and then select 'Donate'.

• If you prefer to use PayPal, you can donate via Invest in ME's biomedical research fund here by adding “centre” in the additional comments section just before you confirm your donation.

• You can also send cheques made payable to Invest in ME to Invest in ME, PO Box 561, Eastleigh, SO50 0GQ, Hampshire, UK. Write "for the centre" on the back to let them know what your donation is for. You can add gift aid to you donation using Invest in ME's gift aid form.

Strapped for cash? No problem, we have a way for those in the UK to raise funds for FREE. Sign up to Everyclick.com and start to Give As You Live™ in support of Let's do it for ME! We particularly encourage those who shop regularly online and grocery shop online to do this.

Unfortunately, it is a UK based application for UK charities and stores only. Stores taking part in this scheme include Asda, Marks & Spencer, Sainsbury's, Tesco and Waitrose. The full list of stores is very wide and varied including many clothing stores, DIY stores, home and garden stores, electrical stores, travel agents and health and beauty stores. You can view and search the list here.

To start raising funds for the centre for free:

Go to http://www.everyclick.com/ and click 'Sign In', then select 'Sign Up'. You need to search for and choose a charity to support to begin the sign up process. You can't choose Let's Do It For ME! as your cause at this point as you need to be fully signed up before you can view and select our page. Search for and select Invest in ME then press continue. Fill in your personal details and press finish to create your account. You will then be redirected to your account page.

Your cause is currently Invest in ME and all funds you raise through Give As You Live™ (see details below) will go to Invest in ME. But to specify that your donations go directly to the UK Centre Invest in ME plan to establish you need to change your cause to Let's do it for ME!. To do this select 'Change my cause' (the icon is an orange circle with an arrow), you will then be given two options:

• Which charity would you like to support?
• Search for a fundraising page?

Choose 'Search for a fundraising page?' and enter "lets do it for me" into the search box. Our page will appear as:

Fundraising 4ME
let's do it for me!

Select this option and 'Confirm change'. Your Account page will now say 'I am supporting: Let's do it for ME!' and the sign-up process is complete.

Next, download Everyclick's Give As You Live™ application here.

Once installed in your web browser Give As You Live™ runs in the background generating funds as you shop online and search the web as normal, at no cost to you. The Give As You Live™ application is currently available for Internet Explorer, Firefox and Safari and is said to be coming soon for Google Chrome. *Give As You Live™ has been updated for Firefox 6.0

The application is an excellent way to raise funds as once it is installed you do not need to remember to do anything further. Whenever you visit a Give as you Live™ retailer a message will appear letting you know you are raising money for your cause, and using your preferred search engine as normal will generate funds as you search the web. However, if you do not wish to install the application or cannot do so, you can still raise funds by shopping online via www.giveasyoulive.com/search/stores and by searching the web via http://www.everyclick.com/

For more information on how the Give As You Live™ application works see How does Give As You Live™ work?

Let's do it for ME! works closely with, and is supported by, Invest in ME. All donations go directly to them and towards the UK centre, see our campaign highlighted on their website here and here.

Thank you so much for your support!

Press Release: “Let's do it for ME!” Awareness and Fundraising Campaign.

A campaign has been launched by patients with myalgic encephalomyelitis (ME) to raise awareness and vital funds for a centre of excellence, the first of its kind in Europe.

The centre aims to translate biomedical research findings into appropriate treatments for patients with ME as rapidly as possible. The research proposed will be of the most advanced possible with a focus on immunology and virology, building upon the research database and enabling new areas of cooperation with other biomedical research facilities.

A spokesperson for the campaign said:

“The prospect of this centre is an exciting new development for patients.

Classified by the World Health Organisation as a neurological disease, the effects of ME are multi-systemic, affecting the brain, heart, musculo-skeletal, immune, endocrine, gastrointestinal systems. ME patients may go on to develop autoimmune diseases, heart problems and rare cancers; many have orthostatic intolerance and postural orthostatic tachycardia syndrome.

Progress in research has been hampered in part by the complexity of ME, as studies have tended to look at the many and various symptoms, providing valuable insights into underlying pathology over the years, but not yet translating into treatments or discovery of the root cause of ME.

We believe the new centre will accelerate research by operating as a hub for national and international collaboration between doctors and scientists, progressing innovative and exciting new avenues for research enabled by advances in technology and science.

The centre would be based at the University of East Anglia in Norwich, with access to the excellent facilities of the research park on campus.

Patients seen at the new centre will be assessed according to the correct and up-to-date diagnostic criteria, which will provide the benefit of a positive diagnosis, rather than simply a diagnosis of exclusion of other causes, as well as the advantage of using well-defined patient cohorts for the research itself.

It will be a great relief for the many NHS doctors who are currently at a loss as to how to help patients presenting with such diverse and debilitating symptoms. As things stand, once given a diagnosis, there can be a tendency for either patient or doctor to attribute any new symptoms to the ME or CFS. Previous studies from UK universities have shown that up to 44% of patients given a diagnosis of CFS/ME were either misdiagnosed or had other, potentially treatable conditions.

The new centre will offer hope to some 250,000 people in UK with ME, particularly to the 25% who are severely affected, some unable to move, speak or swallow, and the 10% who are children. The campaign organisers also wish to honour the memory of two brave young women who were among those who have lost their lives to ME – Sophia Mirza died in 2005 aged 32, Lynn Gilderdale died in 2008 aged 31, having contracted ME at age 14. Specialist autopsies commissioned by their families showed similar damage in both cases to the spinal cord, dorsal root ganglia and sensory nerves.

We are immensely grateful to Invest in ME for taking such a positive step towards this goal and we hope that our campaign to achieve this will receive unanimous and widespread support”.


Press Release on Pressbox - Health

Press Release on Pressbox - Science

The press release can also be downloaded in pdf  here.

A UK Centre of Excellence for Biomedical ME Research and Treatment

Let's do it for ME! is a patient-driven campaign to raise awareness and vital funds for a centre of excellence for translational biomedical ME research, clinical assessment, diagnosis and treatment for patients, training and information for healthcare staff, based at the University of East Anglia in the UK and aiming to work collaboratively with international biomedical researchers.

ME is multi-systemic disease classified by the World Health Organisation in the chapter on Diseases of the Nervous System (neurological) at WHO ICD-10 G.93.3, which lists post-viral fatigue syndrome and benign myalgic encephalomyelitis. CFS (chronic fatigue syndrome) is a term that is listed in the alphabetical index with a reference to G.93.3.

Different criteria for both ME (myalgic encephalomyelitis) and CFS (chronic fatigue syndrome) have been developed in different countries over the years. In the UK, CFS/ME has become an umbrella diagnosis for patients whose similar symptoms may have quite different causes, creating confusion for clinicians and researchers alike, and a barrier to useful scientific progress in this important area of human health. A group of international researchers has now developed a new set of criteria for ME, which can be used for both clinical diagnostic and research purposes – known as the International Consensus Criteria.

Some 250,000 people are thought to have ME or CFS in the UK - 25% of those are severely affected and 10% are children. Some are so severely affected that they cannot move, speak or swallow. Studies at Dundee and Newcastle Universities found that 40-44% of patients with a diagnosis of CFS/ME were misdiagnosed and some had other, potentially treatable illnesses. Development of a reliable diagnostic biomarker and objective biomedical tests for the disease is therefore a priority. This will be of huge benefit to doctors and patients alike.

Patients with severe ME have been largely excluded from research and also from treatment, as services have not been developed to meet their special needs and lack of research means that doctors have no evidence-based treatments to offer them.

In a UK study, ME was found to be the biggest cause of long-term absence from school. Research carried out at Dundee University and published in September 2010 showed evidence of persistent underlying viral infection in children, the same as previously found in adults in 2005. This adds to the mounting body of scientific evidence of the biological processes at work in ME, yet there is no cohesive strategy for taking this research forward so that these biomedical findings can translate into treatments of the root cause of the disease and perhaps even prevention.

Invest in ME is a small UK charity with a big idea!

In 2010, at the 5th annual international conference on biomedical ME research (which it hosts) Invest in ME announced its proposal to set up a Centre of Excellence in UK, combining biomedical ME research with clinical diagnosis and treatment for patients and training for health professionals. A year on and almost everything is in place for this exciting new venture to go ahead. Patient care will be at the heart of the centre and clinical diagnosis of patients will be made using the correct and up-to-date diagnostic criteria. An important aspect of the biomedical research is that distinct patient cohorts are properly defined and maintained. The research being proposed by the university would be of the most advanced possible – using virology and immunology as the key for examining patients.

Invest in ME has links with other researchers and institutes in Europe and Australia and has funded UK research by the innovative Whittemore Peterson Institute for Neuro-Immune Disease of Nevada, USA. Foundations are therefore already in place for international researchers to work collaboratively to advance science and provide the promise of better treatment and possible restoration of function and quality of life to a section of the community who have received very little help in the past, including children and the severely affected.

Do you want to help us make this big idea a reality?

Let's do it for ME!

How you can help