Tea for M.E!

From Facebook Community Page Tea4M.E:

Raising money for M.E. research - with cake! Tea4MEbook@gmail.com

 "I find that cake is an excellent solution to many of life's problems" – Evelyn Smythe*, Doctor Who and the Marian Conspiracy.

M.E. (Myalgic Encephalomyelitis) is a chronic neuro-immune illness characterised by debilitating fatigue, pain, ‘brain fog’ and post-exertional malaise, among many other symptoms. There is no cure. Research has discovered that sufferers have many biomedical anomalies including poorly functioning natural killer cells, abnormalities in brain matter and brain metabolism, abnormalities in the autonomic nervous system and mitochondrial disfunction. Sufferers have a reduced life expectancy and an increased risk of cancer and heart problems. There are currently no medical treatments on offer in the UK.

TEA (as in ‘afternoon tea’ or ‘tea party’) is a meal or snack that may include cake, scones, biscuits, muffins, crumpets and pastries. It is characterised by its deliciousness.
TEA4M.E. aims to use the deliciousness of TEA to combat the awfulness of M.E. by producing a fund-raising teatime recipe book.

Our plan is to make this book available for 12th May 2012 (the twentieth anniversary of International ME Awareness Day). As well as producing the recipe book, we hope to inspire people to hold fund-raising ‘tea parties for M.E.’

All proceeds from TEA4M.E. are to go towards Invest in M.E.’s proposal for a desperately needed UK Centre of Excellence for M.E.

*Ever wondered how to make Evelyn Smythe’s Chocolate Time-Travelling Temptation Cake? Buy this book and find out!

TEA 4 M.E. RECIPE SUBMISSIONS


We would love to receive recipe submissions for teatime treats from M.E. sufferers, their friends or family, anyone who’s keen to support medical progress, or anyone who just likes cake.

The deadline for recipe submissions is 27 November 2011.

All submissions will be gratefully received but they may not all be included in the finished book – for example, if we receive 18 recipes for fruit cake, we will have to choose which one to use. However everyone who submits will (to the best of our endeavours) receive an acknowledgement in the book.

As many ME sufferers have digestive problems or food intolerances, we would like to raise awareness of this by including recipes that cater for special diets. Gluten-free and/or dairy-free recipes would be especially welcome.

Please submit recipes and any enquiries to: Tea4MEbook@gmail.com
PLEASE bear in mind that this project is being run by an ME sufferer. This means that weeks may pass when emails may not be acknowledged due to ill health; not getting an immediate reply doesn’t mean that your submission isn’t appreciated.

Please include the following details:

Recipe name (e.g. ‘Aunt Jane’s Cocoa Crispies’)

Contributor (your name as you would like it to appear in the book)

Ingredients (in metric if possible, please)

Instructions (step-by-step guide to making the recipe. Remember to include oven temperature and cooking time)

If you would like to include a short personal comment about the recipe – eg what it means to you, a memory regarding it – please do so, although please understand that this may not be included in the book for reasons of space etc.

Lists of ingredients are not subject to copyright, however instructions are. Therefore please do not send in recipes that have been copied word-for-word from another source as we don’t want to get into trouble. (A web search for ‘recipe copyright’ will provide many further details.)

Ready to submit your recipe?

Let's do it for ME!

Many thanks to all those involved in this delightful project!
 

Show Us Your Best Side Competition - Winner Announced!

A few weeks ago we launched the Show Us Your Best Side photo competition to raise awareness of, and make the support there is for, Invest in ME's planned biomedical research centre as visible as possible. The competition has really helped to get the LDIFME photo album off to a flying start! Thank you to everyone who took part, and to everyone raising funds for Invest in ME.

Our album:




Please keep sending your photos to us at fundraising4me@gmail.com to add to our album.

We've been sent a good variety of photos and details, thank you to everyone who has taken part to raise awareness so far. When it came to judging the competition, we looked to Invest in ME to choose the winning photo. While it was agreed there were many good entries, and several were very strong contenders, it was unanimously decided by Invest in ME that.. the winner should be.. the Mawer family! 

Congratulations to Tanya, Tara, Dave, Keisha, Tasha!

Tanya (Mum), Tara (11), Dave (dad), Keisha (oldest sister aged 14) and Tasha (middle child aged 13).

Tanya Mawer sent the following response to us on hearing of the competition result:

"Hi my name's Tanya (42) mum to Tara (11) who was diagnosed with CFS in November 2010. Thank you all so much for voting for us and choosing our family group photo as the winner – we are all extremely thrilled and feel very honoured to win the photo competition, I would like you to all know the news has put a lovely big smile on Tara's face.

Prior to falling ill Tara was extremely active (almost to the point of hyperactive!) she did tap and modern dance and musical theatre and loved to sing. We used to tease her as she used to sing instead of talk and dance everywhere instead of walk. Sadly, she's now had to give up on all of those activities.

I feel we are very lucky, and think all in all we have a great team behind us at our local Children’s hospital: -

• Consultants Senior Registrar (we have never had an appointment with the actual consultant),

• Physio – who initially wanted us to do progressive exercise – which we tried and stopped after 4 days as it made Tara worse, so now we do a half hour hydrotherapy session per week instead,

• OT – who runs the weekly hour long “rehab group” with other CFS children,

• Hospital school teacher – who was Tara’s only teacher for the past year and works from a room on one of the Children’s wards

• Clinical Psychologist – who is trying to help Tara come to terms with her illness.

All of whom are brilliant, though not very forthcoming with information – we found out about virtual school via TYMES Trust* and feel that the medical profession only want to push Tara back into “normal” routines, environments and school without appreciating fully that if she were able to do that – she would! Tara has chronic back ache, that we treat with wheat bags, heat gel, calpol and nurofen (our one off prescription of codeine now has gone), we recently stumbled upon a “pain be gone” pen at our local chemists which we trialled overnight and then bought the next day – it works sort of like a tens machine and is helping Tara to become a little more comfortable with her back, although it doesn’t entirely remove the pain as it stubbornly refuses to go. She also suffers with nausea all the time too, we're onto our second anti-sickness drug which we give her three times a day with her meals, in an effort to find something to relieve the nausea for her – and hurrah! It’s working (but shhhhh don’t tempt fate). Other than that she also suffers from headaches, sore throats, joint and muscle pains, burning eyes, pins and needles, swollen lymph glands in her neck, stomach pains, noise sensitivity (she wears ear defenders when I hoover or use the hair dryer etc - only certain sounds seem to upset her, not all noises) and of course tiredness. She finds being in large noisy places such as shopping centres and schools too noisy and too exhausting, social interaction on a large scale is too much for her.

We're currently looking into different schooling options for Tara, as we tried unsuccessfully to get her back to school by sending her for the first two lessons every day. This gradually wore her out ending in a relapse which lasted a month. The Registrar at our recent meeting seems to think the Nisai Virtual academy route is a great idea, so we are pursuing that and trying to get the school to agree to fund it. At this moment in time the school are not agreeable to funding virtual school, although we’re still doggedly negotiating options with them. We have Tara back at her “mainstream” school for one Maths lesson on Mondays, Tuesdays and Wednesday. She also attends OT Group for an hour on a Thursday and Hydrotherapy for half hour on a Friday. Unfortunately, for the time being, this is her limit and so anything extra (such as virtual school) would be too much right now. We are in the process of applying for a Blue Badge (fingers crossed we get it) and taking everything a day at a time.

As a family we are battling with the ups and downs this illness brings. During May this year, feeling frustrated and useless we decided to raise funds for the TYMES Trust* and as a family comprising of myself, Tara (who did it in the wheelchair), Dave (dad), Keisha (oldest sister aged 14) and Tasha (middle child aged 13), and Taras best friend Abby, we recently completed a 5 mile sponsored walk and successfully achieved a total of £607.06, which was fantastic.

I have attached a photo of myself and Tara (on a good day) and the family on the day of our sponsored walk.

If you wish to contact me my email address is: tanyamawer@hotmail.com  I am happy for my email address to be shown, if anyone else in the same boat wants to get in touch - it's good to support and help each other wherever possible.


Whatever else you do, keep smiling

Best regards

Tanya and the rest of the Mawer family" 


In a very generous twist, Tara has chosen to donate her prize to a raffle to raise funds for Invest in ME. Such a selfless and positive thing to do, Tara is clearly determined to make a difference to others, despite being very unwell herself. We wish Tara and her family all the very best and are touched to have helped brighten their day with this news. 


*TYMES Trust - The Young ME Sufferers Trust - is the longest-running UK charity for children and young people with myalgic encephalomyelitis and won the Queen's Award for its voluntary services in 2010. Executive Director Jane Colby, an ex-headteacher with personal experience of ME, kindly commented in our Guestbook when our campaign first launched in July:

"Quality biomedical research will ensure that people with ME are taken seriously. We want to see the work of Dr John Chia on enteroviruses replicated in the UK and further work on enteroviruses funded. Any centre that can do that gets our vote."


Thank you to everyone who sent in their photos and to all our supporters for raising awareness and funds for Invest in ME and the planned research centre. 

Please keep sending us your photos at fundraising4me@gmail.com. We wish to build on the success of this competition and will be selecting a further photo each month to be highlighted on the LDIFME blog. All photos sent to us by midnight November 30th will be eligible for the Photo of the Month for November.

Announcement - New Matched Donation Period

With a big THANK-YOU to James Wythe, his family and friends!

 

James Wythe


We are delighted to announce another matching period - this time for donations made to any fundraising page on Everyclick belonging to the Let's do it for ME! fundraising group, £ for £ to a total of £3,000.

Effective immediately and ending midnight Wednesday 30th of November or until such time as the total has been reached.

Please note that this matching period will apply to all donations made via Everyclick to the pages linked to Let's do it for ME! fundraising group 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.

The various fundraising pages linked to Let's do it for ME can be found here. 

They include Paul Kayes' Sponsored Weight Loss and Amy's Sponsored Screen-Free Weekend from11th-13th November and many more.  You can choose to support any of the individual sponsored events listed on the group page, set up your own fundraising page, or donate to the general Let's do it for ME! page here.

Don’t forget to tick the Gift Aid box if you are a UK tax payer.

You can continue to donate by any other means, e.g. cheque or PayPal on Invest in ME website, during the matching period, but only donations via the Everyclick fundraising pages will be doubled during this period of time.

Are ready to double the value of your donations?

Let's do it for ME!

UPDATE:  You did it!  Together we reached the £3000 target by midnight 30th November, so £6000 with James' generous matching sponsorship and with almost £500 extra in Gift Aid!

THANK-YOU so much to James, his family and friends, all the fundraisers and their generous sponsors, including the lovely Ladies at Boots Thornaby and The VU Sound, whose donation was a delightful surprise!  Click here to see the full list of sponsors - thank you all!



*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. 

Carmel Hillary's new on-line shop!



Carmel Hillary


We are delighted to announce the opening of another on-line shop selling a variety of items for M.E Awareness with all proceeds donated directly to Invest in ME. This shop belongs to Carmel Hillary, staunch supporter of Invest in ME and the Let's do it for ME! campaign for a UK centre of excellence for biomedical ME research and treatment.

Carmel has had M.E for 8 years.  She had started a fundraising page on Everyclick in August featuring her own T-shirt design “M.E. – it's not for wimps”, which has already raised £378 in donations for Invest in ME, including Gift Aid. Carmel said:

“I was recently in hospital, suffering severe chest pains and breathlessness.

I came up against doctors who had never heard of M.E or CFS, so the first night of my stay I was almost sent home, until I collapsed after being made to walk up the corridor.

I was even asked if I was depressed, yet I was so scared with the terrible chest pains.

It was not until the next day - when I explained my old job as an Advance Personal Trainer and Sports Therapist who was struck down with viral meningitis several times and then went on to develop M.E – that I was then given the respect I deserved.

The consultant I went on to see and his team were marvellous, and without their support I may not be here to tell this story, as he knew about M.E, looked beyond my diagnosis and treated my condition as an individual - I had to have blood thinning injections of Warfarin for a blood clot.

I do not want this to happen to anyone else. We need to get together to dig deep ourselves.

I would be very grateful if you are able to donate something and support me in making this centre real, making M.E known as a disabling illness with treatment for us all.”

The “M.E – it's not for wimps T-shirt” is now available for sale in Carmel's on-line shop, alongside a number of other designs and products for ME Awareness, ranging from pyjamas to Thermos flasks and also including car stickers by popular demand.

We would like to join Carmel in thanking her friend Charlie for providing some great logos for her to use and we would like to say a huge THANK-YOU to Carmel for all the work she has put into setting up this great shop!

In the mood for some more on-line retail therapy?

Let's do it for ME!
Click here to visit Carmel's 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 towards the UK Centre. See this campaign highlighted here on the Invest in ME website.

Cheeky ME 2012 Calendar

Ever mindful of opportunities for raising awareness and funds for biomedical research and treatment, some banter among friends following a chance remark led to the idea of producing a cheeky calendar for 2012 featuring men with myalgic encephalomyeltis, which was greeted with a resounding cry of, “Let's do it for ME!”

A page was set up on Everyclick to take the bids and pledges that had begun rolling in to encourage the lads to take part, raising £200 in itself within 24 hours of the post on Facebook requesting volunteer models for the calendar.

Several more good sports proceeded to give freely of their ideas, time, expertise and efforts, including researching production options, coordinating the project, designing, and of course, posing for and taking the photos themselves.   

Andrew Quince of Sound North kindly created a website to advertise and order the calendars and Invest in ME volunteered to distribute the finished product.

The result of this great team effort is that, two months since that first cheeky idea, M.E Laid Bare was sent for printing and is now available to order hot off the press!  

Price per calendar including P&P is £6 for delivery in UK, £6.75 in Europe, £7.50 outside Europe. Your payment is direct to Invest in ME's PayPal account and all proceeds, above printing and delivery costs and PayPal transaction charges, go to Invest in ME's biomedical research fund.

Orders were being placed from various countries around the world within minutes of the site going live and customers are describing the calendars as tastefully photographed, professionally made, good fun and great value for money, so are you ready to place your order?

Click here and Let's do it for ME!

Thank you for your support!

Many thanks to all those involved in this project, including Darren Magee for his creative work on the design of the calendar and Andrew Quince of Sound North for creating and hosting the Cheeky ME website.

The calendars were printed by ModRed.

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.

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!