Bill Clayton is the founder of
the York ME Community. Today, he writes about how the community first became
established, and his experiences of living with the condition.
I love living in York, and have done since I chose it as my last posting
in the Army around 1994. At that time, I
had pretty much a ‘normal’ life, but what is normal? Mine was running marathons for charity,
enjoying badminton, archery and running a girl’s football team for Fulford
Football Club in York. This was as well as a great social and family life
and a very busy job. I was also part of one of the local Business Networking
groups, so let’s just say I was enjoying my normal.
Then came the new normal. In April 2006 I was hit with ME (Myalgic Encephalomyelitis) during a short family trip to
the Lake District. On a warm day, I came over so cold and shivery that I had to
go indoors and put everyone’s jackets on me to get warm. The next day I awoke
feeling like I had been hit by a train. Feeling bruised and sore to touch, I
struggled to move very painful limbs and my brain seemed steeped in a very
heavy sludge, making every thought a struggle and every word hard to find.
Due to this illness I’ve had to give up work, and so now put my limited
energies into running The York ME Community.
What Is ME?
ME stands for Myalgic
Encephalomyelitis.
ME was recognised as a
Neurological Disorder by the World Health Organisation (WHO) (section
G 93.3 of ICD10) in 1969.
It can affect the cognitive
function, mobility, speech, concentration, and things such as light and sound
can be extremely debilitating. It causes
a broken energy production system and has a huge effect on our immune
system. The nature of the illness is
that there are many symptoms and those dealing with it can have any mix and
level of symptoms making it difficult to diagnose.
This illness affects many people across the world. Estimates are
250,000 in the UK and there are likely to be around 800 people in the York area
with ME, some 200 of them being severe, which means house or bed bound. Many of those bed-bound can only feed through
tubes, and have little hope of improvement. This includes children as
young as two years old, and spans all ages. These could be the friends you
haven’t seen for a while, your work colleagues, the guy who used to be there
every week for football, the neighbour you haven’t seen walk down the street
for some time. This is a real illness
affecting real people in your community.
It is likely that four in every one thousand in a population has
ME. Take a minute to do the sums for
your area.
According to NHS Choices, there are more people with ME in the UK than
those with MS and Parkinsons combined, yet it is so much less known than these
other two devastating illnesses.
The York ME Community is a Support and Awareness Group
reaching out to let people know that there is support in the York area. This is
for those with ME, their friends, family or just for those who wish to learn
more.
There is a website giving lots of information as
well as a great mix of local and general stories of interest. The site has proved to be a great hub of
information for those unable to get out and about, as well as the business
community who support us.
There is a Coffee Club that meets twice monthly for those able to make it,
with a chance to natter with those in a similar situation. For those wishing more daily interaction,
there is also a Facebook Group called ‘The York ME Community’ where members
‘meet’ to talk about all sorts of stuff, not just ME, as we like to remember
that this illness doesn’t define who we are.
If you would like to find out
more about Bill, please get in touch using the Contact tab at the top of the website. Do you attend a support group for your condition? What do you think of them? Let us know your thoughts in the comments
below!
