Journal of IiME Volume 7 Issue 1 from his choir, and others have done more besides. At the same time, planning group member and writer Barnaby Eaton-Jones reworked his play, Running To Stand Still, in aid of our cause. Music artist Mama Chill decided to proactively support IIME in her awareness raising and by donating proceeds of downloads and joining the team. Her ME Awareness track is based on the original “I Can't Stand The Rain”, and her new track, “Don't Say Nuthin If It Ain't Worthwhile” was released for May Awareness. There are various other artists, writers, musicians, photographers, supporting IIME. Members of the planning group run the campaign websites and on-line shops; organise May Awareness events such as The Big Sleep for ME, designed to be accessible to people of all ages and levels of illness severity and launched in 2012, ongoing fundraisers such as the 1st of each month One Day-One Pound and Small Change to Change M.E, the Christmas card competition, calendars and summer quizzes, card sales, stalls, supermarket and church collections. We also proactively support other patient initiatives that include IIME such The Big Shave 2013 and Walk for ME. This is all done painstakingly between us over the course of days, weeks, months. Make ME Crafts exploded onto the scene last year and is proving hugely popular, with an ever-expanding team producing an impressive range of arts and crafts available all year round. A young contributor summed it up with this comment: “Big thankyou to Jon because you have brought the community together, its really positive, everyone is happy making and doing things they enjoy and its all going to hopefully find what is going on with our bodies !! Sooo happy to be a part of this XD xx” Invest in ME (Charity Nr. 1114035) (May 2013) Another member of our planning group featured alongside an advert placed by IIME to raise awareness of the foundation research project. Rosa had previously crocheted soft wool blue awareness wristbands for IIME and her grandparents hosted a coffee morning in aid of our cause. Following a decline in her health, Rosa was moved to a nursing home, and fed by nasojejunal tube. She chose to mark her 21st birthday by raising awareness and funds for our cause. The staff at the nursing home joined in with a pyjama day with all proceeds to Rosa's appeal. 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 said that the appeal passed all their expectations. Having contracted ME at 8 years of age, Rosa's story epitomises the indomitable spirit of the majority of people of all ages with ME, as well as the spirit of our campaign. A 14 year old boy 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 are grateful to IIME and to all those who are engaging with the international drive to instigate, fund, and conduct the kind of high quality scientific biomedical research that may be translated into long-awaited effective treatment options for this organic disease. www.investinme.org Page 15 of 36
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