Sometimes Bill Clayton is left so disabled by ME that he can hardly move.
But despite the debilitating effect of the illness, he is determined to increase the public’s understanding of it.
So he was left upset and angry after his home city of York failed to mark ME Awareness Day.
ME Awareness Day is honoured each year on May 12th, with buildings around the globe from Dublin to Sydney to Brighton all being lit up in blue to raise awareness for the illness.
Bill contacted York Minster and City of York Council to see if they could organise something – but the Minster declined and the council failed to get back in touch with him.
“I did go back to them to say: ‘I’m not asking for the congregation to be involved, it’s not a big deal, I’m basically asking you to flip a switch, and I would do the rest of the work that might be required around York to raise the profile.
“I was disappointed with the response really.”
But he wants to avoid causing upset.
“Although I was angry and upset to begin with, I’m not gonna shout people down.
ME stands for Myalgic Encephalomyelitis, which means muscle (myalgic) and head (encepalitic) symptoms.
It is not known what causes ME, but research has revealed a number of abnormalities in some ME sufferers. Findings include: evidence of persistent viral infection, abnormalities in muscle structure, and evidence of damage to nervous tissue.
There is currently no accepted cure and no universally effective treatment.
“We don’t need enemies, we don’t need people ignoring us – we’re trying to accomplish the opposite.
“I want to educate people and bring them on board so they can learn what it’s all about.”
Illness misunderstood
It is estimated that 250,000 people in the United Kingdom suffer from ME, with that number jumping to 17 million globally.
“I used to run marathons for charity, I used to play badminton, archery, and run a girls football team in Fulford.
“It came to the point where I wasn’t able to keep up the work, sport and social life that I used to have.”
Bill believes the illness is still trivialised and misunderstood, citing that it used to be termed ‘yuppie flu’.
“It’s a different thing from chronic fatigue syndrome. Even GP’s lump them together.
“When it hits me, it’s like my body is shutting down. I can’t think straight, I can’t find words, and I can’t read. My jaw actually locks up and I can’t speak at all.”
There isn’t a magic pill
Although he can’t work, when he does have the energy, he tries to raise awareness. Bill said:
I know so many people in the York area with this illness but it’s just not recognised. There isn’t a fix for it, there isn’t a magic pill, and there isn’t a cure.
Bill runs a support group for ME suffers, called York ME Community.
“The York ME Community isn’t a charity – we’re a support group. I’m not asking for a penny.
“I’m not someone that likes to put my hand out and ask for money because people get tired of charities. All I’m trying to do in the York area is raise awareness.”
Council and Minster respond
A spokesperson for the York Minster said:
In 2015, we received 37 applications to light up the Minster from local, national and international organisations mostly for profile-raising and fund-raising.
Agreeing to all of these would have resulted in the Minster being lit up almost every week of 2015, with each separate request requiring technical input from our staff and liaison with City of York Council because some of the lights needed to light-up the Minster are on buildings which are not ours.
For these reasons and in the interest of fairness to all of those who contact us about this, requests to light up the Minster will normally be declined. Sadly, we don’t have the capacity to meet all of the requests that we receive.
A spokesperson for City of York Council said:
Whilst an ME awareness campaign doesn’t specifically have a public health focus – i.e. it’s not necessarily a preventable condition based on lifestyle/behaviour changes – we can of course look at other ways we can help support awareness in the council.
“There are also a number of national charities – Action for ME or the ME Association – which could probably signpost to local support groups that could rally support or the back of the national charity’s name.
The council were also willing to swap details with Bill to support any marketing material he may have.