Hello,

Thanks for taking the time to visit my JustGiving page.

I have been ill since November 2013 and recently diagnosed with ME. I have decided to take part in 'The Big Sleep for ME'. 

The Big Sleep for ME is run by people with ME - for people with ME.  It raises awareness and funds for Invest for ME's work to find a cure for ME.  Launched in 2012, by members of the 'Let's do it for ME!' planning group, it 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, we thought why not turn this into something positive and have a mass Sleepathon.  The Big Sleep for ME was born.

ME (Myalgic Encephalomyelitis) is a chronic neurological disease that most sufferers have for many years. It is multi-systemic, so symptoms are many and varied.  They can include seizures, pain, nausea, severe exhaustion, headaches and poor concentration. People of all ages can get ME, but it seems to peak in children between 11-14, and adults between their 20s - 40s. It can be very disabling. 

ME most often occurs following an infection, but can sometimes develop after other challenges to the immune system, such as the physical trauma of giving birth or accident.  Currently there is no cure, few treatments and not even a diagnostic test which means misdiagnosis is common.  There is an estimated 250,000 people in the UK and 17 million worldwide who have this disease, 25% of these are severe and either house or bedbound. It is more common than MS and AIDS/HIV. 

The situation for people with ME is desperate.  With no cure, diagnostic test, few treatments and poor healthcare services things need to change for the better.  In 2010 Invest in ME decided the only way forward to improve the situation was to establish a Centre of Excellence for ME to diagnose, treat and research ME, as well as provide training and information for healthcare professionals.  The Centre is proposed to be located in Norwich, Norfolk using existing facilities at the Norwich Research Park.  This means any money raised can be used to maximum effect instead of going towards building costs.  Through its hard work, alongside that of its Steering Group and supporters, it has managed to make significant progress and now the first foundation research study is underway.  

 

The Centre has the potential to become a real game changer in ME.  Providing outstanding care whilst undertaking world-renowned research, and has the capability of becoming the foremost facility not only in the UK, but Europe too.  Its prestige and level of expertise would enable it set a gold standard that could initiate the improvement of current services provided throughout the UK and beyond, so that a new era could begin in the treatment, diagnosis and research of ME. Enabling ME, that has largely been neglected until now, to finally get the attention it deserves. 

 

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