Right where you left M.E. - Hannah’s fundraiser

Hannah Avery is organizing this fundraiser to benefit ME Association.

WHO AM I?

Hi! For those who haven’t come from my video - my name is Hannah. I’m 19 and have a severe chronic illness called Mylagic Encephalomyelitis (M.E.). I deal with crippling exhaustion and pain and many other horrible symptoms on a daily basis. This means I’m bedbound and have carers to do everything for me. My life is incredibly limited and lonely and frustrating.

WHAT IS M.E.?

Myalgic Encephalomyelitis is a chronic multi-system disease that affects 15-30 million people worldwide.
25% of sufferers are left housebound or bedbound. 95% of patients never recover.
Sufferers feel ‘effectively the same every day as an AIDS patient feels 2 months before death; the only difference is that the symptoms can go on for never ending decades.’
M.E. patients have lower quality of life measurement than any other disease tested.
There is no cure and no approved treatments.

WHY DOES IT NEED MORE FUNDING?

Despite this, research into M.E. represents less than 1% of all active grants in the UK. This is a tiny percentage compared with other chronic illnesses.
To put that in perspective…. people with M.E. are “measurably more disabled” than those with Multiple Sclerosis and yet, M.E. receives at least 20 x less research funding.
Therefore, until the government allocates more funding, any research into treatments is patient funded.

THE EMOTIONAL IMPACT:

I grieve for the healthy life I lost, as well as the healthy life I could’ve had these past five years. I grieve for the present and it’s continual flow of people, parties and events that I’m missing out on. I grieve for my future, the one that could’ve been and the lonely one ahead of me if nothing changes.
I used to think it was the worst thing to be able to remember the way everything used to be in painful detail but now it’s five years later and those healthy memories are starting to fade and the ill ones have come into focus…. and that is terrifying.
I’m right where I was five years ago- I’m still ill…. I still desperately want to get better…. there’s still a wider community of people who want me to get better…. millions around the world want to get better…. but they can’t do anything because the government and majority of medical professionals still don’t care. There is still no fair amount of funding…. no training and education of healthcare professionals…. and no support system ready to catch M.E. patients.
I’m still here, right where you left M.E. We’re all still here, waiting…. So don’t leave us to suffer without any hope for getting our lives back. Help fund a cure for M.E. Please, please, please DONATE NOW.

WHAT IS THE CHARITY?

The charity I’m raising money for (and the money will all go directly to them) is The ME Association. They fund research studies through The Ramsay Research Fund. They have always regarded the promotion and funding of medical research to be a key priority. They also provide a very important support system for people with M.E. through all stages of their illness and are continually advocating for our rights.
Thank you in advance for your contribution to this cause which means so very much to me.