County Donegal ME Event June 2013

ALL THINGS BEAUTIFUL 22nd June 2013 Co Donegal *Valerie has asked IiME to encourage as many ME sufferers as possible to send her their personal story plus photo as she believes it is an important way to use our collective voice and allow others to know that people with ME are not isolated to one area - that it is global problem.  IiME are happy to collate these stories, print them and send them to Valerie* On their website (click here) Invest in ME wrote: Valerie Moody is a courageous and determined lady from Co Donegal. Valerie has had ME for thirty years - the last nine years bedbound. Despite this Valerie believes it is still important to use what we have got and try to bring about change and, like us, she believes that if we want to bring about change then we have to do it ourselves. Valerie has helped IiME in the past and contributed to the costs of the CAWG meeting last year in London [1]. This made it possible for IiME to even attempt to achieve this in collaboration with the Alison Hunter Memorial Foundation of Australia. Valerie is now arranging another ME awareness and fund raising event entitled "ALL THINGS BEAUTIFUL" on 22nd JUNE 2013 at her home Momeen St Johnston, Co Donegal . between 2pm and 5pm. As she has done previously all funds raised in Sterling will be given to Invest in ME and in Euros to Tom Kindlon's Irish ME/CFS Association. The event is in a number of parts. The opening is being performed by a government official. Minister Dinny McGinley TD has agreed to come and open the event and he has even rescheduled governmental overseas meetings so that he would be able to attend. Minister McGinley came to Valerie's home almost two years ago to launch her book and it is impressive that there now exists a continued representation especially in government. There will also be a coffee afternoon and music. Valerie will also hold an ME Information corner and intends to put up on a wall all the stories which have been collected so that other people could read them and, in a more personal way, identify with us are real people with a real illness. It will be an opportunity for the community to get together and enjoy each others' company to see and bring about awareness of ME. The idea would be to get as many "important" people as possible to come and get photos. So Valerie is contacting ME support groups to see if they could send a representative to be there with him. It would be a good opportunity to impact and use our voices together so that people see that there are other people with the illness and that we are trying to help ourselves - and Minister McGinley is an official in the Irish Government and "although one man cannot change policy we can plant the seed for change". Valerie has asked IiME to encourage as many ME sufferers as possible to send her their personal story plus photo as she believes it is an important way to use our collective voice. This would also allow others to know that people with ME are not isolated to one area - that it is global problem. IiME are happy to collate these stories, print them and send them to Valerie to avoid her doing more work than is necessary as this would be easier for her and the items would be ready to pin up. IiME will be sending material to Valerie for display and distribution - along with any stories we can pass on. These stories may not get much publicity but Valerie believes that we can still plant the seed and when ME does come up at governmental level in the future there will be someone with an awareness of the effects of ME and will hopefully be on our side. By so doing the general public will be able to identify with our plight in a more personal way and be able to see that people with ME are real people with a real illness and had lives before ME devastated them. If you would like to contribute to this with your story then please send in, via email if you wish, your story with a photograph. We will print these and/or send them to Valerie. Our email address is -  info@investinme.org Our postal address is - Invest in ME PO Box 561 Eastleigh Hampshire SO50 0GQUK The venue for the event is at Valerie's home - a farm. Valerie had 300 to 400 hundred people at her house for tea at the last book launch that she performed and she is hoping that there will be a good attendance this time. She is hiring a marquee for the tea and music this year. Valerie explains that even if we educate the people that come to the venue it is still raising awareness and that perhaps when people do take ME they will at least be treated with respect and dignity by the people around them and that they will not always have to defend themselves against misperceptions and misinformation while waiting for a cure. Thank you from Valerie Further Information: [1] Click here Clinical Autoimmunity Working Group Meeting [2] Click here Let's Do It For ME Support ME Awareness - Invest in ME Click here to read this on Invest in ME website

February 2013

6 Nations Cap signed by Welsh Rugby Captain Ryan Jones

6 Nations cap signed by Welsh Captain Ryan Jones 

Trudi Berridge has kindly donated a cap signed by Welsh rugby captain Ryan Jones (pictured below).  

Trudi is a member of the Make ME Crafts Team.  She said, "I wanted to do something else to raise funds as I can no longer make items to sell.  I really hope you can make a good amount for Lets do it for ME.  Thank you for your help with this". 

This is great timing as Wales have just won the RBS Rugby Six Nations Rugby Championship!

Welsh Rugby Captain Ryan Jones

Pictured below is a letter to Trudi from Lucy at The Welsh Rugby Players Association, who kindly made this happen for the charity.  Lucy wrote, "I hope it is able to raise a significant sum for the charity". 

Letter from Lucy at The Welsh Rugby Players Association

Big thanks to Trudi, Lucy and Ryan and big congratulations to the Welsh Rugby Team!

Let's make this a win-win and do them all proud by raising as much as possible for this special cap.

All proceeds from the sale will go to the Invest in ME Biomedical Research Fund. 

The cap is listed here on eBay - starting bid £9.99

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

*The Let's do it for ME campaign is run by volunteers in support of Invest in ME charity's proposal to establish a UK centre of excellence dedicated to biomedical research and treatment of myalgic encephalomyelitis (ME).  ME is a neurological disease that can strike anyone of any age without warning.  All funds raised go directly into the Invest in ME biomedical research fund.  Please visit our main website to find out more about myalgic encephalomyelitis, Invest in ME charity, and our fundraising campaign* 

The Big Shave 2013

The Big Shave 2013 website

Amy wrote about The Big Shave 2013......

The Big Shave 2013 - small sacrifice - BIG cause
 
Hello! My name's Amy, I'm 30 years old and I live in Winchester (Hampshire).
I have suffered from this horrid illness M.E. for just over a decade and am mostly housebound and often bed bound.

Every year I try and do something in my own little way to raise funds for charity, but when you have severe M.E. you are quite limited in what you can do!

In the past I've done a sponsored silence and sponsored screen free weekend, as well as giving up Birthday and Christmas money to raise awareness and money for M.E. However, each time that I do, I am very aware that it is only those in the M.E. community or their immediate friends and family who donate. Very rarely does the news travel to the general public. I realised it was going to take something a bit bigger to do this and given that my body wont allow me to bungee jump or parachute jump... sadly, I have made the bold or should I say bald decision to shave my hair off to raise money for charity!! Very drastic I know, especially as a female, however I hope this small sacrifice will show my dedication to the causes I hold dear, as well as the desperate longing to see my friends and myself recover from this horrific illness that is destroying our lives.

I couldn't decide which two of my favourite charities I should donate to-

Invest in ME are a great charity desperately fund-raising to put money into bio-medical research as well as planning to start the first M.E. bio-medical treatment centre in the U.K.

The 25% M.E. Group are a support group for severe M.E. sufferers. Their advocacy service have given me incredible support and practical advice over this past year. My advocate has been my rock during desperate times. However sadly she is just one person and has a long waiting list. Raising more funds would allow the charity to expand the service.

So I have decided to give you the option of choosing who you would like to donate to.

The 'The Big Shave' will take place during M.E. awareness week 6th-12th May 2013.
I have been told it will take 2-3 years at least, for my hair to grow back! so it really is a sacrifice for me, but a totally worthy cause! Thank you so much for coming to this site and finding out more. If you are able to donate it really will make a difference.

Click here to donate - Invest in ME

Or by JustTextGiving... Text TBSI99 £5 to 70070
 
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Click here to donate -  The 25% ME Group 

Or by JustTextGiving... Text TBSG99 £5 to 70070 

Or if you are feeling brave and would like to join me in shaving your head for this important cause, please get in touch! (contact details on the website)

Amy x

Amy is being incredibly brave in what she called a ''small sacrifice'' GULP !!

We have created an event page on Facebook, please do join and support Amy - CLICK HERE

Let's Ploink!

Invest in ME has just registered with Ploink! - a great new site offering you the chance to donate small amounts of change to the charities of your choice - no charges to the charities throughout 2013 - and you can nominate Invest in ME as Charity of the Month for May 2013 - perfect timing for May ME Awareness!

Here's how it works:

1. It's FREE to sign up and takes just 30 seconds.
2. Choose up to 3 of your favourite charities - Invest in ME is at the top of this list (click here).
3. Click on "register to support this charity" - all you need is your name, email address and a password.
3. Start ploinking coins from 1p to £2 into the piggy banks - it's really easy and fun to do!

You can put in as little or as much as you like – just like dropping your spare change into a collecting tin. Once a piggy bank has at least 99p in it you're able to donate the money to the charity. You can do this using a credit, debit or maestro card on our secure payment page also PayPal.

This is so quick easy to sign up to even for an ME foggy ploinker ..

Great fun for all the family, children, grandchildren and adults - supervised of course.

It's free !!  No commission charges for donations made in 2013 and you can add gift aid if eligible.

Ploink! fits in nicely with  small change to Change ME  - if you let Sue Page know on the event page of any donations you make via ploink! then she can add it to the totals for this 2013 fundraising event.

Don't forget the bonus of being able to nominate Invest in ME as the charity of the month for May for a chance to win extra funds for this small charity's BIG cause - thanks to Ploink!

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

Walk for ME!

The Walk for ME website is now up and looking great! 

This simple but brilliant idea was created by Luke Remnant, with lots of help from Sarah-Louise, Ian, Tracey and Kelsey ....

The aim is to raise ME/CFS awareness as well as funds for charities focused on biomedical research into the causes of ME/CFS. Walk for ME 2013 is supporting two charities - Invest in ME and ME Research UK - you choose which one to support when you create your JustGiving page - then you can join your page to the Walk for ME Team.  No prizes for guessing that we at Let's do it for ME hope that you will join Tanya, Lesley, Lianne, and Rory the Dog (on behalf of Tony) and others in choosing to support Invest in ME on JustGiving for Walk for ME 2013 - or, like Luke, you can support both charities through this event by creating two JustGiving pages - one for each - and join both your pages to the Walk for ME Team. 

The idea behind Walk for ME is that friends, family and loved ones of an ME sufferer do a sponsored walk on their behalf: hence the name Walk for ME or Walk for me. It is hoped that as many friends and loved ones as possible will do a sponsored walk during ME Awareness Week which runs from 6th May to 12th May 2013. 

The Walk for ME Team hope this will be a fun but poignant event. Family and friends can choose to walk any distance they choose; it could be 1 mile, 5 miles, or 10 miles or whatever feels appropriate. The whole idea is that the friend or family member is doing something that their loved one would love to be able to do but can’t. We really hope that by doing this on their behalf and raising sponsorship money it will help raise awareness of this debilitating illness.

People with ME often have friends and loved ones saying they feel helpless and they wish there was more they could do to help. This is their chance!  If walking is not up their street, they can of course find lots of other easy and fun ways to help raise ME awareness and funds by visiting Let's do it for ME! 

A big thank you to the Walk for ME Team.  To find out more including details of how to get involved in this event and join the ever growing team please visit the brilliant Walk website ..

Walk for ME

Walk for Me event page on Facebook.

http://walkforme.co.uk/

*Let's do it for ME is a campaign run by ME patients and parents/carers in support of Invest in ME's proposal to establish the first UK centre of excellence combining a clear strategy for high quality biomedical ME research with patient care, aimed at developing appropriate medical treatment/s for ME as rapidly as possible.   Established in 2006, Invest in ME is a small charity and is run entirely by volunteers - ME sufferers or parents/carers.  With its focus on promoting and facilitating biomedical ME research to increase understanding and proper recognition and treatment of this disease, Invest in ME  is making a big difference to the lives of people with ME and giving realistic hope for the future.  All funds raised by the Let's do it for ME campaign go to Invest in ME's biomedical research fund towards high quality biomedical ME research*

Post by Kerryn Besbeech Groves ..
"Hi everyone! Do any of you live in East/West Sussex? My sister will be taken part in "walk for ME" for me and we'd like to make more of an event of it. Hopefully get other walkers/families involved. We're planning on setting the route as a circuit around Tilgate Park lake, in Crawley, as sufferers and family members can all set up together and give support for the walkers. The date isn't decided yet, but it will be around ME awareness day/week."   

Harrison Honey

Alison and Phil wrote:

This picture (right) was taken of our son Harrison Honey, 6 months before he got sick with CFS/ME.

He was just turning 11 years old and it was his last day at Junior School, Year 6.

This was taken at his leaving concert. The theme was :-

 ‘Reunion 2020 – what you had become’.

Harri has always wanted to become an Airline Pilot ever since we can remember.

A week after the above photo was taken, we flew out to Grenada in the West Indies, for a wonderful two week holiday.  My brother was getting married out there and what a wonderful day it was!  

Harri had such fun celebrating with his little sister, Lydia, (then aged 2)

and his younger brother Jayden, then (aged 8).

On the return flight home, he was fortunate to be able to visit the pilot who showed him around the cockpit.  

He was so excited. 






In the September of 2010, he started his new Secondary School and all was going well, he had settled in well.   Everything was normal.

Sadly in January 2011, six months after our wonderful holiday to Grenada, he became very sick. 

Little did we know then how it would change our lives as we knew it.
Three months later he was diagnosed with CFS (Chronic Fatigue Syndrome)/ME (Myalgic Encephalomyelitis) which is a serious neurological condition.

His symptoms can fluctuate daily, the symptoms can come and go, or they can ease or get worse. Symptoms he has suffered include, apart from the on-going obvious debilitating fatigue, problems with his brain and central nervous system, resulting in loss of memory, concentration, balance, coordination and fine motor skills.

Experiences difficulty with sequencing words and numbers, speaking, thinking and absorbing information.

Muscular weakness and can often be seen twitching or having muscle spasms.

Exhaustion up to 72 hours after effort. Even minimal exertion (cognitive or physical) can trigger exhaustion.

He has abnormalities in sleep rhythm (i.e. insomnia), appetite, temperature control, digestion, blood pressure, circulation, dizziness & nausea, bouts of racing pulse (tachycardia), particularly upon standing.

Development of sensitivities (e.g. to light, sound, touch), mood swings, panic, anxiety or depression which is a result from brain dysfunction and the distress of this misunderstood illness. 

He has spent about seven weeks, on two separate occasions, in hospital as an in-patient where he was receiving regular monitoring, play therapy, hospital school, and physio, to help him regain the strength to walk, as his legs were like jelly and he didn’t have the energy to be able to stand. He has also spent at least six months at hospital as an out-patient. He has endured various hospital tests, including many blood tests, MRI brains scans, EEG’s, ECG’s, blood pressure monitoring and Tilt Table testing.

He will be 14 years old this July and although his illness is not life-threatening, during these last two years his young life has been completely put on hold in every way and he has been pretty much housebound. The impact upon the family has been devastating, especially for his siblings, which then becomes another issue you have to face. Life is far from normal, but we do our utmost to try to make it as smooth as possible.  

Harri was always a bright child, extremely academic and very sporty – there are not many sports he has not tried. I think ‘Free Running’ is one of the few yet still to try and this is something he would love to try out one day.

He has sadly now missed out almost three school years and misses all his friends that he had made – and all the activities he used to do, just being an ordinary boy. He just wants his life back as he knew it. He can now barely walk 100 yards without feeling awful and has to rely on his wheelchair.  Even standing up proves difficult as he begins to feel dizzy & sick. We can't rewind time, and as precious as it is, it keeps passing him by.  He gets particularly upset around special events such as Birthdays and Christmas understandably as it sparks yet another reminder of time passing him by.

It is still such a misunderstood illness and continues to baffle the medical world.

So in an attempt to feel that he is at least doing something to fight his illness he decided to raise money for a charity called IiME and by doing this helps to raise awareness and ultimately find a cure.

He has been completely overwhelmed so far by everyone's generosity and this has helped give him a boost and lifted his spirits.

We would like to say thank you for your time in reading this – and extra special thanks to anyone spending an extra two minutes of your time by clicking on the Just Giving link below:-

http://www.justgiving.com/Harrison-Honey

Love Ali & Phil Honey

Many thanks and very best wishes to the Honey family and all Harri's sponsors from the Team at Let's do it for ME in support of Invest in ME.

 
 

80,000 and Counting

Invest in ME wrote.... 80,000 and Counting Let's Do It For Me Since its inception Invest in ME have campaigned for biomedical research into ME. With the Let’s do it for ME team we are, together with wonderful supporters, turning this into a reality. Now the research fund for biomedical research into ME has reached £80,000, thanks to the great ideas, efforts and commitment of so many great people. We have also had a truly generous donation of £3000 from one donor, who wishes to remain anonymous. We thank you all. LDIFME is a patient-driven campaign to raise awareness and vital funds for the  proposal for an examination and research facility that can lead to a centre of excellence for translational biomedical research into Myalgic Encephalomyelitis (ME). The centre would clinically assess, diagnose and treat patients. Working in a  collaborative way with international researchers and providing training and information for healthcare staff such a facility to drastically change the rate of progress in finding treatments or cures for ME.  The campaign is run by patients and carers who want the findings of high quality research to result in the development of appropriate treatments and who will not give up that hope for the future, despite the huge personal cost to their health that a lot of the campaigning has caused.  We began arranging our biomedical research conferences in our first year and have continued them ever since – recognising that the need for biomedical research into ME also needs a platform to show that research. At our IIMEC8 conference we focus on ME now becoming a mainstream research area and we have representatives from most of the main biomedical research initiatives now occurring throughout the world.  And thanks to supporters the UK will now be able to claim a promising project to add to the research base. We thank the LDIFME team and supporters and all the supporters of IiME and the research proposal. In stark contrast to the myths portrayed by some elements in the media, and by some establishment figures, the LDIFME campaign shows the true nature of people with ME and their families - looking to make progress and regain their health, using forward thinking and a can-do approach to raising awareness and making ME a mainstream illness. The campaign by ME patients and their families may not receive much publicity but, as we have said before, actions speak louder than awards.

Campaign Updates

Latest Total Raised - £76k .... and rising!

* What an incredible start to the new year for the campaign with so many new initiatives and more supporters coming on board, as well as benefits from all the fundraising efforts during the festive season, such as the £139.66 raised from Jon Watson's Make ME Crafts stall and the wonderful response to young Harrison Honey's JustGiving appeal.  Please feel free to email us at: fundraising4me@gmail.com or post a comment on the blog or our Facebook page if you would like your ideas or events to be highlighted. Your amazing efforts at raising ME awareness and funds for this vital biomedical ME research are really making a difference and are more greatly appreciated than we can adequately express and here are just some examples ...

* One sponsor helped us to see the New Year in with a celebratory matching £100+Gift Aid donation to the One Day – One Pound event on 1st January! Many thanks to all who support this monthly event inspired by Ruth Gilchrist, by donating or spreading the word among family and friends that every £1 Invest in ME receives will be spent on biomedical research to help take us forward to our goal of proper medical treatment of this disease, myalgic encephalomyelitis (ME). 

 * New for 2013 is a great idea by Sue Page that she calls “small change to change M.E.” Are you or someone you know in the habit of setting your loose change aside until it mounts up, or is it something you feel inspired to do during 2013 in aid of our cause?  As with all the fundraising ideas, please don't worry if you can't afford to donate yourself, we value all efforts to raise awareness of the reality of myalgic encephalomyelitis and the need for high quality biomedical research aimed at making proper medical treatments available asap.

 * Several new JustGiving pages were created during January in support of Invest in ME ...

 Vivien Leanne Saunders wrote on her page, “I've never been particularly sporty! Well, this year I have decided to enter every running race I can, and I will have a fundraiser for Invest in ME for each one. I'm starting with the Alexandra Lap at Lancaster University, which will be the first race I've ever run! Thanks for your interest! Even if you can't donate for whatever reason, please take five minutes to visit http://investinme.org/ and read a little of what Myalgic Encephalomyelitis really means, and how it affects people's lives”.

Victoria Shorthouse running in the Worcester Marathon for Louise who has ME; Samantha Brown gave up her mobile phone for a whole week in January; Michelle Nix is doing a sponsored weight loss; Adam Werth wants to increase awareness of the disease; Amy Christian's idea is for people to be sponsored to read as many books as they can within a given time-frame. Jackie Robinson, Catherine Bligh and Dawn Guarnieri are among those joining Lesley Innes' in a PJ Day on ME Awareness Day 12th May in aid of Invest in ME. Luke Remnant is organising a Walk for ME event with a little help from his friends and signed up to join him in supporting Invest in ME so far are Tanya Mawer, Lesley Innes, Lianne Simon, and Rory the Dog on behalf of Tony Bradstock. The idea is for people who are fit and well to do a sponsored walk – anywhere for any length some time during May ME Awareness Week - on behalf of someone who is ill with ME or for their chosen charity in general.  Click here to see the full list of all supporters raising funds for Invest in ME on JustGiving.

* Keela Too was delighted to announce that her daughters' school is going to put up a teacher's team and a pupil team to run the Belfast Marathon and that Invest in ME has been put forward as the chosen charity for this year.

 * Many thanks to Stacy Hart and those of you who bid on eBay and bought her blinged up Hosung soft toy monkeys. Stacy has paid the full proceeds of £120 to Invest In ME and said, “So give yourselves a pat on the back, thanx again its mega appreciated :) xxx"

 * Sue Head Evans' superb range of scarves has raised £350 for Invest in ME so far and she'd really appreciate your help to raise even more!http://www.facebook.com/SuesScarves4UnME

 * Jane Hurst was pleased to announce that the total raised for Invest in ME from April to December 2012 from sales of her greetings cards and Nature photocards was a whopping £620 (this includes £55 in Collection tins at Morrisons). Jane said, “Thanks as always to Mum (Christine Hurst), Dad and Paul for all their help, and for selling so many cards at the Supermarket sales. It's really appreciated. xx" Jane's cards are here: Pack 1http://www.facebook.com/media/set/?set=a.156767279186.145229.639834186&type=3
Pack 2 http://www.facebook.com/media/set/?set=a.156759794186.145225.639834186&type=3

* Becky at Beansprouts was among the new people to join the wonderful Make ME Crafts Team. You can see the really lovely range of items they provide in aid of Invest in ME on the Make ME Crafts Facebook page and website. We also plan to add a full directory of sellers to the Let's do it for ME website as we go through the year, so please email us at fundraising4me@gmail.com with your seller contact details and any photos you'd like us to highlight. 

* The Big Sleep for ME launched with great success in 2012 for ME Awareness Week and promises to be even bigger and better in 2013. Organiser Julia Cottam is currently updating the website with plans and ideas for all sorts of activities to suit supporters of all ages and levels of illness severity. 
 *  There is also the SOBAFF charity walk which ends in London in time for the 8th Invest in ME conference on 31st May - wow, what a busy year ahead and how wonderful to have such support!

* The remaining calendars made by Let's do it for ME supporters for Invest in ME are reduced to £3. With 12 beautiful landscape photos, introductory info, and a different fact about ME at the foot of each page to help keep awareness going throughout the year, they are ideal if you'd like to buy one as a free gift for display where people will see them for your local GP surgery or health centre, waiting rooms, library, local shop etc.http://www.investinme.org/Calendars%202013.htm

Don't forget to browse through the pages on our main website for other ways and resources to help raise awareness and funds throughout the year and make 2013 lucky for some – Let's do it for ME!

More news to follow soon - meanwhile, thank you so much for your support!

 

small change to CHANGE M.E

New fundraising idea for 2013 by supporter Sue Page!  Please join in if you can and spread the word.  Sue wrote ..

"Last year as a gift, I was given a piggy bank. I have saved 1p 2p and 5p pieces in it until it is full.  I counted £6-00 out and put the extras back in the piggy to start again .. I had always planned to give the money to Let’s Do it for ME.

 

Then I thought how “every little helps” (!) and what if lots of us did this next year to raise funds for Let’s Do it for ME ....... ?

So my proposal is that I have set up a just giving page called “small change to CHANGE M.E”.... and I will start it with my £6-00 collected so far, and I will continue collecting .... I hope as many of you as are able, plus friends and family members will join in collecting small change in a special container and donating it to the Just Giving page for Invest in ME in this way. 

PLEASE let me know if you think this is a good idea, and most importantly if you are prepared to join in. I am setting the total to aim at as £2013 which sounds a lot ..... but if several people commit ....we will exceed that by the end of the year easily (not good at maths, but I think we will!!)

LET’S USE OUR small change ... TO MAKE BIG CHANGES FOR M.E.!!

http://www.justgiving.com/Sue-Page1

A little about me..... 

My name is Sue. I was very fit and healthy until 1993 when I contracted a virus......I never fully recovered....I was diagnosed with M.E. in 1995. I know the horrors of this illness and will do anything I can to help bring research and hopefully treatment and a cure.

A little about M.E....... 

Myalgic Encephalomyelitis is a debilitating and disabling illness affecting both cognitive and physical functioning. It can affect any person of any age, and its effects on life style are profound......often leading a sufferer to be housebound and dependent on others. There are a range of horrid symptoms and currently NO CURE......

PLEASE HELP US TOWARDS OUR GOAL.
Thank you.

http://www.justgiving.com/Sue-Page1

Here are some comments on the Small change to change M.E. event page on Facebook. 

Alison: "Great idea! My children will love doing this and it's so easy to do.Well done for the inspiration, will find a jar and get collecting!"

Stuart:  " I've suffered with ME for around 10 years, so I'll do this. I must find a suitable vessel into which I can place the loose change, give it a sort of 'home', so I'm reminded about this pledge every time I see it. Great idea. Let's do what we can to get the necessary research to beat this debilitating condition."

Thanks to Nadine for this picture of her choice of collection vessel.



What will you use to collect your loose change for M.E?



Rob is using an old Paul Masson caraffe-shaped wine bottle, Linda is using a piggy bank that she received as a free gift with a purchase from Orange - no prizes for guessing its colour - and true to form, fanatical fundraiser Paul Kayes suggests using something the size of a beer barrel! 

Sue said, "So great to check in here this morning and see more people joining....thank you everyone! Please invite any friends and family who may wish to join us in this too."

Many thanks to Sue for this great idea and to all those joining in to help the small charity Invest in ME to create big changes for M.E in 2013!  

* March Update:  Invest in ME is now registered with Ploink! a simple but brilliant way to collect your small change online that fits in perfectly with "small change to Change M.E" - it's free to sign up - there are no service charges to the charities throughout 2013 - and you can nominate Invest in ME as Charity of the Month for a chance to win extra funds for our cause - click here to read more about Ploink!

*  The Let's do it for ME campaign hopefully has something for everyone who wants to take part, whether you are a fit and well supporter or bedbound by illness.  All efforts are greatly appreciated, from raising funds to raising awareness of the reality of myalgic encephalomyelitis and the urgent need for biomedical research and treatment.  Please see our main website for ways to help.  Thank you for your support - Let's do it for ME! 

 

December Updates

Total Raised so far - £73k!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A Charity Christmas Gift for ME

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

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

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

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

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

Please click here for ways to Donate.

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

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

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

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

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

Last minute presents? …….Teds and Tugs!

 

 

How can you resist this cutesy little bear?  Perfect as a stocking filler or even as a treat for yourself, each bear comes complete with its very own ‘Let’s do it for ME’ snowflake T shirt and handmade fleece scarf and hat in baby blue.  Their legs and arms are jointed so they can stand (5” high), sit and even wave!  Bears cost just £3.50 each.

Or perhaps something for your canine friend?  Handmade tug toys!  The tugs are made from fleece (gentle on dogs' mouths and stretchy) and are machine washable.  Each has a handle for pet owners to hold to get a better grip.  They measure around 22" slack and 29" when stretched. Although called tug toys they’re great for wiggle and chase. They can even be used as part of agility training - and at £2.00 each they’re a snip!   

Every bear and tug comes with a Christmas greeting label.

Postage and packaging is as follows:

Up to 2 items £2.90 1st class or £2.40 2nd class; up to 4 items £3.00 1st class or £2.50 2nd class.

To place an order please contact Annabel Luery either by email annabel.luery@tiscali.co.uk or message her on Facebook.  Payment by PayPal preferred.

But hurry – only limited stock available!

All profits from the sale of these items will go towards the ‘Let’s do it for ME’ £100K campaign target (see leaflet for more details).