28 March 2013

County Donegal ME Event June 2013

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
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 toMinister Dinny McGinley 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
Hampshire SO50 0GQ
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. 

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* 

22 March 2013

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


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

16 March 2013

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.

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

4 March 2013

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 ..

*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."