In this post we talk to Bill Clayton to find out about The York ME Community and his views and experiences of life with ME. Bill is a member of the Forum Steering Group and is a vital source of local knowledge and great ideas – we’re so glad to have him on board!
Hi Bill, tell us a bit about The York ME Community…
The York ME Community is currently over 180 members strong and came about because of my personal experience with ME. I’ve been dealing with ME since April 2006, but it took another five years before I was actually diagnosed. I hadn’t really been aware of it as an illness before this time so I spent those five years pushing on, trying to carry on as before. I was to find out that this was the worst thing I could do and so wanted to ensure others in a similar position were warned against damaging their health in this way.
People with ME may often feel lonely, as well as guilty in not being who they once were for their family and friends. It’s common to hear people describe feelings of desperation that the government and the medical system give limited support, funds for research, or even believe that this is a real illness.
The York ME Community website is a focal point where we post ME research information, stories and articles of interest, as well as local information relevant to our members in the York area.
Who is the group for?
The York ME Community is open to anyone in the York area looking to learn more about the illness, or to gain support from our members – many have years of experience of managing ME.
The group is also there for family or friends to find support and friendship, knowing they can interact with like-minded people who share similar experiences.
What is ME?
Myalgic Encephalomyelitis (ME) was recognised as a neurological disorder by the World Health Organisation (section G 93.3 of ICD10) in 1969. It can affect cognitive function, mobility, speech, concentration and things such as light and sound can be extremely debilitating. It can also cause a broken energy production system and have a huge effect on a person’s immune system.
The nature of the illness mean there are many possible symptoms, and those dealing with it can have any mix and level of these, making it difficult to diagnose. Severity can range from mild, where it has a slight effect on your daily routine, to severe where you may be bedbound, unable to move without being in severe pain and some people are even fed through feeding tubes.
The one element of ME that most people refer to is the fatigue. This fatigue is caused by actions, both mental and physical, that most people would carry out without thought. For many it means choosing bathing/showering or getting dressed. Many days it’s impossible to do either. The fatigue is not like that you might experience from a busy day at work, or a tough workout. The fatigue is your body closing down, as if to protect itself, leaving you unable to function, unable to process words, or to form them. If you can put words together, you may find yourself physically unable to actually open your mouth to express them. That is ME fatigue.
There is much more information about ME on our website.
What are your hopes for The York ME Community?
My aim is to gain more local business support in raising awareness, and the website has become a focal point for those business supporters of The York ME Community. I emphasise the word Community as those with ME live next door to you, are your co-workers, your family and your friends.
We have already had support from a number of local businesses and a number have come on board with our Inter Company Fantasy Football League sponsored by TGA Mobility, which again helps us to spread the word.
What are your favourite things about The York ME Community?
Building on my previous answers, worldwide, ME still flies below the radar when it comes to research funding, government backing, medical training and general belief. I believe that although there are organisations trying to spread the word on a world wide basis, there’s a need for local awareness to protect and support the people of York.
When the situation allows, we get together for a cuppa and a natter every couple of weeks, supporting each other, and giving advice to those newly coming to terms with the illness.
On a personal note, running the group gives me an outlet for my frustration as to the lack of the aforementioned lack of government funding into an illness that causes so many people to be missing from their lives.
You have a huge collection of resources on your website, links to useful organisations, news and even poetry! What other benefits are there to people wishing to become members?
Firstly, to become a member, you have to be a York resident, and have a genuine interest in ME. We will give you details of a group near to you if you apply from outside of York, but if there is nothing nearer, you’re likely to be warmly welcomed. It isn’t open to all as we want a group of people that can give proper, ‘knock on your door for a cuppa’ kind of support. There are many other groups that people can join that have UK or Worldwide membership; we’re a little more exclusive!
I look for any opportunity to raise ME awareness, and try to raise its profile where and when I can. I do this through social media and by attending local charity or wellbeing and support awareness days. I also do the odd radio and TV spot and am a features writer for The Yorkshire Times.
In 2018 we had an ME Awareness Flag for The York ME Community flown at Everest Base Camp. The York Inset Scooter Club also had their annual ride out on our behalf, raising funds that we use to spread the word about ME in York. They headed off from The York Eye (Clifford’s Tower) on a run out to the coast, sent off by the Mayor of York and the York Normandy Veterans.
One of my relaxing things to do is a bit of word doodling, or some might call it poetry. I write on a number of topics, but ME has been a popular topic over recent years. There seems to be an interest from people with ME as they use them to explain to family and friends what ME is really like. I have been very lucky in having some published as well as read out on the radio in Australia and the US.
As a York-based disability group, what has been the biggest positive change you’ve seen made for the disability community in York?
This is a tough one to answer as I see little positive change from those we would hope to receive help from. I think the positive is that more people in the disability community are realising this and taking it upon themselves to forge partnerships and groups to allow us to have a louder voice that will hopefully be heard and listened to as we gain momentum.
Lastly, if there were one thing that you think would create the biggest positive change for York’s disability community, what would it be?
Being ex-Military, I see the way the American public support their Veterans and treat them so well. As much as I would like that same treatment for our Veterans in the UK, wouldn’t it be good to live in a society that cared for the disabled community in the same way? A society that looks to do what they can to allow disabled people to live life on an equal footing to everyone else?
Thanks Bill! It’s great to learn more about The York ME Community and to get to know some of the fantastic disabled groups in York.