Thanks for taking the time to visit my JustGiving page.
As those who know me will know, I've had Myalgic Encephalomyelitis (ME/CFS) for 15 years. As I look back over those years, I realise what a sense of loss they have encompassed. Not only the practical losses such as not being able to work for the last 13 years or not being able to physically do the things I used to love such as travelling, cycling and dancing, but more importantly the loss of not being able to be there as much as I'd like for others and especially for those I love. I have missed many a funeral, wedding and birthday due to being too unwell at the time and there are many friends I haven't seen in quite a while because I've been unable to travel. On top of this I have had a sense of not being able to give back to society.
That being said, I don't want this to be a sob story as I have much to be grateful for in my life. ME is a spectrum disease and there are many sufferers more severely affected than me. There are currently approximately 250,000 people in the UK with CFS/ME, some of which remain bedbound for years.
I recently watched the very moving film 'Unrest' by Jennifer Brea, which she made despite having severe CFS/ME. It is a very brave and moving film about the lives of those with this condition and I feel that it's a real catalyst for change. Since seeing it I've decided to do what I can to raise funds for research into CFS/ME. I've set a target of £1500, which represents £100 for each of the years I've been ill.
I can't take on a physical challenge such as a marathon to raise funds, so as part of this fundraising effort I will be asking friends and family to forgo giving me Christmas and birthday presents and instead make donations. I'll also be looking into any other low energy ways I can raise funds. I have chosen to donate to Invest in ME Research (www.investinme.org). They are a small charity run solely by volunteers who raise funds both for biomedical research into ME and for the development of a UK Centre of Excellence for ME.
There is nothing I would love more than to see a breakthrough in the diagnosis and treatment of CFS/ME and any donation, however small, will mean the world to me.