Hi I'm Emily,
Thank you for looking at my fundraising page. I’m 23 from Northamptonshire, and have been suffering with the debilitating illness Myalgic encephalomyelitis (M.E) for 7 years. I’ve been unable to leave my bed for more than a few minutes for three years now. But I have at last found a viable treatment option which gives me hope of recovery and for a new lease of life free from the constraints of illness. I am trying to raise the money to get access to this vital specialist treatment that is simply not available on the NHS. All of the money raised will help to fund full testing and treatment tailored to me at Breakspear private hospital, which I so desperately need.
What is M.E?
M.E is a neurological illness (the name means muscle pain, and brain and spinal inflammation) which affects people to varying degrees. Until recently very little research has been done into M.E, so a cause has yet to be found. It’s often thought to be mere tiredness, but in reality it’s really not. Possibly this is because it’s an invisible illness and although symptoms are severe they are not obvious to people. It affects just about the whole of your body. I personally suffer so severely from migraines, get utterly exhausted from something as simple as sitting up, and have breathing difficulties, racing pulse, problems seeing and dizziness. I have joint pain, muscles spasms and my muscles are very weak. I have awful temperature control – hot sweats followed by shivering for no apparent reason. These daily physical symptoms have meant I’ve spent the last three years in bed. On top of this I suffer from confusion, forgetfulness and an inability to concentrate for long. Lights and noise make things much worse and leave me very unwell. Simple tasks such as watching TV, going on the computer or even having a conversation are very big activities with similar payback affects to a very long weekend partying. I’m constantly developing new allergies and generally my body just never really does what I want it to. I could go on about my current situation and the many not so glamorous aspects of my life with M.E and how debilitating it is eg. carers, disability aids, electric wheelchairs, ambulance trips etc. but instead I’m looking at the positive and to the fact that something can be done about my situation now.
If you want to read more about Myalgic Encephalomyelitis this website has a lot of really useful information: http://www.meresearch.org.uk/what-is-me.
Why we are fundraising.
I am raising funds to visit a fantastic UK clinic offering M.E. specific treatments, in the hope that they can find the root cause of my illness and begin steps to help me recover. Breakspear is a private hospital near London which specialises in M.E. diagnosis and treatments; it is a standalone institute and offers care which the NHS simply cannot provide. The treatment is expensive and I have already personally saved a substantial amount towards my treatment, however, being bedbound means I have had to look at other ways of raising the money for my treatment. I have so far had my telephone consultation with the doctor who proposed a test and treatment plan for me. The cost of the initial tests and some treatments is over £7000, which gives some idea of the costs involved and why fundraising is necessary.
About Breakspear, and why not other treatments?
Breakspear is an allergy specialist clinic with a comprehensive M.E treatment program I personally know several people who are currently being treated there and they have seen vast improvements so far. Breakspear uses immunotherapy, diet and testing for original viruses still in your system. As well as finding how your metabolism, energy making systems and neurological processes are functioning to find tailor made treatments for each patient.
I have tried, and read about, many different treatments, conventional and alternative, to improve, but lots of them just wouldn’t work for me. Often these treatments risk me becoming so much poorlier by attempting them. I am currently able to sit up for several minutes supported and stand for a few seconds and take one or two steps. These are my maximums and I don’t want to risk losing this ability, I’d rather maximise my current virus free semi-stability. The only NHS treatments available are learning to live with the condition and cope with symptoms through not overdoing it or underdoing it. This is an impossible line which never really treats or improves the original problem, especially when one virus can wipe you back to square one quite easily.
To read more about Breakspear and the treatments they offer go to this link: http://www.breakspearmedical.com/
I believe that everyone has the right to free health care. The NHS is wonderful, and for most things they are the best, but not for M.E unfortunately. There is just not enough specialist knowledge, and it’s an illness that can so easily be made much worse through inappropriate ‘care’. Breakspear offers the specialist care that I really need to regain as much of my previous health as possible, for the first time in a long time I have hope of recovery, and intend to do all I can to take full advantage of these opportunities. I would love to share this journey with you and will be posting updates of my progress here aswell as on facebook. Or photos and updates will be regularly posted on www.emilysrecoveryfund.blogspot.com.
Even though it's incredibly unlikely, if for some unforeseeable reason Breakspear is unable to help me, then funds left over will be all donated to the amazing www.investinme.org. Which is a great charity funding ME research trials, some currently looking into cancer drugs that have been shown in similar studies abroad to cure ME.
How you can Help
Those who would like to help, in anyway would be so much appreciated, M.E. is such a poorly understood illness that even spreading the word would be so helpful. However if you could find the time to fundraise or donate some money I would be more grateful than I could ever say.
We have had so many great suggestions for events to be arranged in the coming months, cake stalls, regular quizzes, raffles and sponsored events. So there will be plenty of opportunities to take part or sponsor brave fund raisers.
To donate please hit the ‘Donate’ button over to the right, and give whatever you can- even the smallest amount can make a huge difference!
If you would like you can set up a regular donation to ‘Emily’s Recovery Fund’, it is really easy. Just 2 pounds a month, or as much as you’d like to give would be incredible. Just click through to the blog here: http://emilysrecoveryfund.blogspot.co.uk/ and use the drop down menu for Regular donations and choose an amount. Click the subscribe button and you are all signed up :D.
Please help us out by publicising ‘Emilys Recovery Fund’ not only to raise more money but to spread the message about M.E. to those who don’t know about it, the more people that know about M.E. the better.
Thank you so much, any ideas for fundraising or questions on anything, please email us at [email protected] or follow us on Twitter or FB and drop us a message over there. We’d love to hear from you.
Thankyou again for your on-going support and encouragement,