News

Invest in M.E

Five years ago our 11-year-old son, Alex, was an active, sociable, happy young lad enjoying the last few months at Newport Junior School and looking forward to starting at Burton Borough School with all his friends. Unfortunately, he started to feel increasingly poorly, and by the end of 2014 Alex was so ill that he had to leave school as he became first housebound and then bed bound.
After numerous medical tests he was diagnosed with Myalgic Encephalomyelitis (M.E) an illness which, at the time, I knew nothing about except that sufferers feel exceptionally tired. I now know that tiredness is just one of the many debilitating and unrelenting symptoms associated with this multi-systemic, neurological, autoimmune disease. These symptoms include pain, severe cognitive impairment, sensory issues, sleep problems including insomnia and sleep reversal, gastric problems, orthostatic intolerance, dizziness, flu-like malaise and of course the constant and debilitating physical, mental and cognitive fatigue meaning even the most basic of daily tasks are often impossible.
Alex used to be a committed and enthusiastic member of Church Aston Scouts and Audco Archery Club, involving himself in all the activities they did. He had weekly ice skating and guitar lessons and loved walking our dog in the countryside with his brother. He was very happy at school and had lots of long-standing friends who he loved spending time with.
Now 16, Alex is bed bound at least 75% of the time and is reliant on mobility equipment including a stairlift and a powered wheelchair to move around safely. He has been too ill for any education since 2014 (all of his secondary school years) and has lost all his friends. He rarely has the energy to get washed and dressed let alone leave the house. He suffers all day, every day with all the horrendous symptoms already described. He is never symptom free, not even for a minute. This has been his life for the last 5 years and as a family it is heartbreaking watching our son/brother/grandson/nephew suffer constantly with absolutely no respite, being unable to make it better and feeling scared of what the future holds for him.
Unfortunately, virtually no money is put into M.E research despite it affecting approximately 250,000 adults and children in the U.K. with many sufferers left house or bed bound unable to work or go to school. This lack of research means that there is no effective treatment, no cure and no prognosis for this chronic, life changing condition.
We are reliant on charities to fund much needed biomedical research, with the charity Invest in M.E Research leading the way, but they desperately need donations to continue their important work and to give M.E sufferers hope.
We are hugely grateful that Arry has chosen to support Invest in M.E Research while doing the Mountain Mayhem challenge, and it would be amazing if lots of money could be raised to support Arry on this 24 hour bike race and to help M.E sufferers like our son. Huge good luck wishes to Arry, and thank you so much for raising much needed funds and awareness of M.E!
Will and Kathryn

To find out more about Invest in M.E Research (registered UK charity 1153730) please visit investinme.org

Arry West will be fundraising for Invest in M.E Research when he does the Mountain Mayhem 24 hour cycle race 22-23 June (www.mountain-mayhem.com). Anyone who wishes to sponsor Arry is welcome to call into A-head Hair and Beauty, on Gravelly Drive in Newport, where we will have a sponsor from at reception, or visit justgiving.com/fundraising/wwwinvestinmeorg

A poem about M.E

One Stupid Dot
Me & M.E Same letters separated by a dot
One’s who I am, one’s what I’ve got
One’s who I used to be, one’s what I’m not
Oh I’m still me, there’s just a dot in-between
But it’s a dot that can stop you from living a dream
It’s a dot that separates the M from the E
And while it’s sat there it’s hard to be me
The me that I was in healthier days
Before the dot came forcing the parting of ways
I’m nothing as M and empty as E
But side by side again I could be me
That dot has got a lot to explain
How can something so small cause so much pain?
So much devastation, seem endlessly cruel
It’s just one stupid dot after all
Why does it have to be stuck in the middle?
Causing complex symptoms that read like a riddle.
I have to believe that just as it came
The dot will mysteriously vanish again
Every night before sleeping I hope and I pray
That I’ll wake up as me without a dot in the way
Mama Chill