Press Release for IiME's Big Break win of £2000!

Invest in ME statement - http://www.investinme.org/IIME-Newslet-1306-01.htm

"Thanks to a tremendous effort from (over 3500!) supporters and colleagues Invest in ME were able to win the Direct Debit The Big Break 100 good causes initiative for April.  Apart from winning the first prize of £2000 - all of which has gone directly to the IiME Biomedical Research Fund to support biomedical research into ME - this has also created much needed awareness of ME in the public.  Here is the Direct Debit press release .. "

Bacs Press Release:

Independent UK charity, Invest in ME (IiME), has received an unexpected windfall in a nationwide campaign to give 100 good causes a Big Break, courtesy of Bacs Payment Schemes Ltd (Bacs), the organisation behind Direct Debit.

Each month Bacs is setting aside a £5,000 pot to be shared between charities and good causes and is encouraging members of the public to vote for their most deserving good cause. The charity with the most votes will win £2,000, the second most popular will win £1,000 and the remaining £2,000 will be shared between 200 runners-up.  

Invest in ME, a charity run by volunteers, campaigns for research and funding to establish a better understanding of the causes of Myalgic Encephalomyeltis (M.E.) and help develop better medical treatments for the illness. And the charity is now £2,000 better off after coming out top in April’s public voting.

Mike Hutchinson, head of marketing at Bacs, said: “The work that Invest in ME carries out is not only crucial for the development of better treatments for the illness, it’s also carried out for free by volunteers so it’s great to be able to support the charity and announce it as the second winner in our Big Break initiative to help 100 good causes.”   

Kathleen McCall, chairman at Invest in ME, adds: “We’re absolutely delighted to have won the £2,000 from the Big Break campaign. One of the charity’s main objectives is to create a UK centre of excellence, which can provide proper examinations and diagnosis for M.E patients and the £2,000 prize money will go a long way in helping us to achieve this. On behalf of all the volunteers at Invest in ME, I would like to thank everyone who voted for us.”

Let's do it for ME supporters have energised biomedical ME research.

Thank you so much for your support fro, the team at Let's do it for ME! 

MANY HAPPY RETURNS: A HUGE THANK YOU!

"We'd like to take the opportunity to say a huge thank you to everyone who supported last year's Bernice Summerfield story Many Happy Returns, the celebratory release featuring a wealth of talent in front of and behind the camera. It's so far raised £4454 for the charity Invest in M.E. And it's still on sale!" 

Bernice Summerfield: Many Happy Returns is available on the website for only £10, as a download only, with all proceeds to Invest in ME charity, for biomedical research into myalgic encephalomyelitis (M.E)

A feature-length tale, it's written by Xanna Eve Chown, Stephen Cole, Paul Cornell, Stephen Fewell, Simon Guerrier, Scott Handcock, Rebecca Levene, Jacqueline Rayner, Justin Richards, Miles Richardson, Eddie Robson and Dave Stone and stars, amongst others, Lisa Bowerman, Stephen Fewell, Ayesha Antoine, Miles Richardson, Katy Manning, Nicholas Briggs, Sylvester McCoy and Sophie Aldred.

Cast: Lisa Bowerman (Bernice Summerfield), Stephen Fewell (Jason Kane), Steven Wickham (Joseph), Miles Richardson (Irving Braxiatel), Louise Faulkner (Bev Tarrant), Harry Myers (Adrian Wall), Thomas Grant (Peter Summerfield), Ayesha Antoine (Ruth), David Ames (Jack), Marcus Hutton (Leonidas), Katy Manning (Iris Wildthyme), David Benson (Panda), Nicholas Briggs (The Curator), Sylvester McCoy (Late Arrival), Sophie Aldred (Dave Stone), Christopher Allen (Adam), John Ainsworth (Casino Robot), Gary Russell (Vice Chancellor) 

Big Finish produce an officially licensed range of Doctor Who dramas.  Here are some responses from fans of their Facebook page to the exciting announcement above:

"Great news. Having M.E myself, it would be great to see some breakthrough medically . Well Done Big Finish !"

"Amazing! Thanks again to everyone involved in this and being so generous in giving the proceeds to charity x"

"This was a truly amazing release. The scenes with Benny and Jason at the end literally had me sobbing my heart out. This is how to do an anniversary story, Doctor Who producers, I hope you've taken notes."

"I cried my eyes out as well at the end! Well done! Good story.. great characters and a good cause! How about another one next year!!"

"Congrats on money well raised."

Future archaeologist and adventurer, Bernice Summerfield, is the creation of top novelist, comics and TV writer Paul Cornell; an enthusiatic supporter of the Let's do it for ME campaign, having seen the devastating effects of ME first hand.  He has already done a lot to raise awareness by featuring characters with ME in his work.  Many Happy Returns was directed by John Ainsworth, Gary Russell and Scott Handcock; who also organised, produced, and generally ensured this happened. On its release in November, Scott had said:

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

Upon receipt of the whopping cheque for £4454 earlier this week, Invest in ME said:

"This is quite an amazing achievement on top of what Scott already raised with his marathon running. It is a privilege to be supported by such generous people like Scott and his colleagues".
Many Happy Returns featured in an article in BBC Dr. Who magazine in October - you can see it on our website here - and you can see photos of Let's do it for ME Bear meeting some of the wonderful writers and cast in the photo gallery here. 

Bernice Summerfield: Many Happy Returns is available on the Big Finish website.   

A huge thank you to everyone involved in this production and to all supporting it!

You might also like: 

Justyce Served - A Small Start with a Big Finish - a book by Alun Harris and Matt West about the early days of Audio Visuals: Audio Adventures in Time & Space - the majority of the creative team went on to be involved with Big Finish.  The authors' profits from this book will be donated to Amnesty International and Invest in ME.

Running To Stand Still - an audio play about M.E. written by Barnaby Eaton-Jones. 

Our previous posts:
March 2012: Big Finish Helps Our Big Cause!
December 2012: Bernice Summerfield: Many Happy Returns Out Now!

The Big Shave 2013 - Sharon Hollier

"Hi, my name is Sharon Hollier. I am in my 40's and live in Welwyn Garden City, Hertfordshire.

I first was diagnosed with M.E. in 2000 and in 2004 I managed my symptoms so well that I was able to work part time but started relapsing in 2008 and had to give up working in 2010.

My teenage son had to give up school at the age of 12 because he also has M.E. He uses the internet on his computer to learn, research, play and communicate with his friends in their homes. I have always wanted to do something crazy for an M.E. charity and was inspired by Jessie J, on Comic Relief, to have my head shaved like hers. I'm having my hair shaved to a number one on the trimmers, not going totally bald.

My regular hair dresser will be doing the deed in her salon on Sunday 12th May 3pm at Cut Loose Hair Dressers, Hertford. I have been through a lot since I first had my hair cut there. I've also been through many different styles and colours. Tarnia (the proprietor) and her staff have always been supportive. I feel that as they have been there with me through my ups and downs, it would be appropriate to let them shave my hair.

I get quite emotional going to other charity events and thinking that my son is house bound with M.E. and there is little that could be done for him. This is my chance to raise some money and awareness for an M.E. Charity. 

So note it in your diary: My Big Shave will be 12th May at 3pm at Cut Loose hair salon, 30 Fleming Crescent, Hertford, SG14 2DJ.

To support Sharon's Big Shave on JustGiving, click here ..

The Big Shave 2013 for Invest in ME 

To text a donation use the code TBSI99 (that's the letter I) 

and the amount £1, £2, £3, £4, £5 or £10

to 70070

Remember that an extra 25% in Gift Aid is added to your donation if you are a UK tax-payer.

Please see the The Big Shave 2013 website for more details of this event for M.E. awareness week 6th - 12th May 2013 and if you would like to take part. Amy Hanson urged, "Please share with your friends, family, neighbours, even the neighbours dog! It would be great to raise as much as possible".

http://www.thebigshave2013.org/

The Big Sleep for M.E. is back for 2013!

Following the great success of last year’s event, The Big Sleep for M.E. is back for 2013. And this year with your help, it’s going to be even bigger and better! This fun and inclusive awareness and fundraising event for the UK Centre of Excellence for ME, includes a mass sleepathon that runs throughout ME Awareness Week 6 – May, as well as an opportunity to hold your own ‘sleep inspired’ event, such as PJ parties, PJ Pride Days and Sleepwalks, Sleep-cycles and more, so that even more people can get involved.

The ‘Sleepathon’ is extremely easy and flexible to take part in and means that anyone, even those with severe ME, can do their bit. All you need to do is lie back, make yourself comfortable, and, if you really want to, sleep! Do it at home or anywhere that takes your fancy, either on your own or as a group. And if you feel like it, dress up for the occasion. If fundraising, just get people to sponsor you, and for awareness, just let others know you’re taking part. The same applies if you are holding your own ‘sleep inspired’ event.

Whilst the Sleepathon takes part during ME Awareness week this doesn’t mean you can’t have your own sleepathon or ‘sleep inspired’ event at other times of the year. We need to keep up the pace if we’re going to beat ME!

The Big Sleep for ME has expanded massively since last year, and to get in the party mood it will be running a number of competitions and special events, including ones for children. There’s even a special Kids’ Den webpage for children with activities and competitions. It’s a fun way for them to get involved and keep them busy.

The event now also has its own online shop where you can buy Big Sleep merchandise such as sleepwear, tops and, the very popular Big Sleep Bear, that comes complete with his very own nightcap. For those on a budget, there are free stickers and transfer downloads.

The Big Sleep for ME was set up to fill the need for a completely inclusive ME event that anyone, including those with severe ME, could take part in. Given the limitations severe ME imposes, a great deal of thought went into what kind of event could take place. In the end, the solution was so obvious. Since, many with ME have to spend a lot of time lying down either on a sofa or in bed and some sufferers are completely bedbound, why not turn this into something positive and have a mass sleepathon. The Big Sleep for ME was born! Whilst the event now encompasses all manner of ‘sleep inspired’ events and is about having fun, it also has a serious side which is to not only raise much needed awareness and fundraising for the Centre, but also to increase awareness of ME generally.

There are so many ways to get involved and the fantastic thing about The Big Sleep for ME is that everyone, from sufferers to healthy supporters, can unite together to do something positive for ME.

If you want to find out more, the event’s website is a good place to start. The event also has its own Facebook page and is on Twitter, you can also email them. If you fancy taking part, the team has set up a group JustGiving page which you can join to make it even easier for you, and there are extensive online tools and information to help as well. You need to register to take part, but as thank you, you’ll be entered into a Free Prize Draw. The team have introduced this to keep track of everyone and plan for future years.

If you can’t take part, but would like to support the event you can always sponsor someone you know, or make a donation to The Big Sleep for ME fundraising group via its JustGiving page or by texting BSME99 to 70070 with the amount you would like to give (for example BSME99 £5 to 70070).

With special thanks to Julia Cottam from our ‘Let’s do it for ME’ team for thinking this up, and for all the hard work she’s put into developing and launching this inclusive and positive venture, as well as to everyone taking part.

We can all make a difference to ME!

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

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.

 
 

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! 

 

Rosa's 21st Birthday Appeal - December Update


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

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

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

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

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

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

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

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

We are nearing our target to initiate our first project.

We will continue to progress and facilitate collaborations between researchers.

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

Let's Do It For ME."

Please see links for the ad below*

Rosa's 21st Birthday

9th November 2012

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

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

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

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

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

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

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

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

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

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

• Wear the Let's do it for ME badge

How to donate:

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

• Send a cheque payable to Invest in ME to:

Invest in ME,

PO Box 561

Eastleigh

Hampshire

SO50 0GQ

Please write 'Rosa's Appeal' on the back

• Make a direct payment to Invest in ME -

Bank: Lloyds TSB Eastleigh

Sort code 30-92-94

Account number: 02252685

Please mark your donation 'Rosa's Appeal'

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

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

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

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

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

Thank-you for your support.

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

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

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

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

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

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

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

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

For other news of our campaign please see December Updates