York ME sufferers want to set up new group | The Press, York | 24 June 2015

From The Press, York, 24 June 2015.

A new row is erupting over claims ME – or chronic fatigue syndrome – is all in the head. MAXINE GORDON speaks to two sufferers in York whose lives have been affected by the disease

Bill Clayton and Odette Marshall, co-founders of the new York ME Group
Bill Clayton and Odette Marshall, co-founders of the new York ME Group

IF you thought we’d come a long way from myalgic encephalopathy (or ME) being dismissed as “yuppie flu”, think again.

A new tussle has broken out between sufferers and their campaigners and the medical establishment following the release of the book It’s All In The Head by leading neurologist Suzanne O’Sullivan, in which one of the topics covered is ME.

It has sparked a robust response from the ME Association and Countess Mar, member of the House of Lords, who also suffers from the condition, pointing out that the disease is a neuro-immune disorder and not a psychological one. Since 2005, ME has been classed in the UK as a long-term neurological condition, following guidelines from the World Health Organisation.

An estimated 250,000 people in Britain are affected by this illness – but the true figure could be much higher.

So believes Bill Clayton, an ME sufferer from York, who is setting up a local awareness group. He says many people go undiagnosed, or un-believed, with little understanding or support from their GP, family and friends.

Bill’s story is like so many with the condition. Ex-Army, Bill was fit and healthy, worked full time, ran marathons and coached junior football as well as played badminton before a flu-like episode floored him. He expected to get better, but as the weeks wore on, the symptoms lingered.

Today, nine years on, his life is a shadow of what it once was. “I used to be out most evenings and had a social life. Now that takes place on the laptop through Facebook and twitter.”

Bill, 58, lives in Fulford with his wife, Donna, and 17-year-old daughter Kelly. The impact on family life is immense too. Donna now has to work full time and do most of the household chores.

Bill wants to help, but his body won’t let him. It’s not just the chronic fatigue that feels like “a gorilla on your back” wearing him down, bright lights and noise are draining too and can cause headaches. He has daily pain too. “It’s a feeling of being badly bruised and aching all over. It hurts to get out of bed. A number of times, my skin is sore to the touch, as if I am touching raw nerve ends.”

Another common complaint among sufferers is “brain fog” where words stop making sense. Bill says: “Many a time I can’t find a simple word when talking, writing or thinking about something. I forget the names of people I have known for years.”

Odette Marshall lives in South Bank and was diagnosed with ME five years ago at the age of 35. A former science teacher, her symptoms came on gradually and she believes she was suffering for a good two years before diagnosis.

“I gradually started feeling more tired and would get up in the morning creaking like an old woman. Initially, the doctor said it was depression, but that didn’t fit, because I’d just met Dave, to whom I am married now, and I was in a good place.”

The illness has forced her to give up her job; she says it was even impossible to work part-time as she never knew what days would be one of the “good ones”.

She said: “I didn’t realise how bad I got until I stopped. My nature is to push on; that’s what you do. I fuddled my way through the day, forgetting things and feeling a sense that I wasn’t really on the planet.

“It dramatically impacts who I am. I don’t work any more and that has an impact on your identity of yourself as well as on your friends and family.”

It also affects life choices, like having children. “I would have loved to have had kids,” says Odette.

Bill and Odette met through a local social networking site, Street Life, and believe there is a need for a York-based support group for people with ME.

Bill is in the process of setting up a website. The network would initially be online, given the fact that many sufferers are housebound.

Bill says: “I want to raise awareness to get more funding. If they can get rugby players wearing pink for cancer research, why can’t we do the same for ME?

“I want people to come out of their bedroom and talk about it. The more people who hear about ME, the more the money will go up, and we can get fixed.”

The website is expected to launch later this year. In the meantime, if you would like to contact Bill, email: bill@york-me-community.org


FACT FILE


1. The disease has many names: ME or myalgic encephalopathy (originally myalgic encephalomyelitis); or CFS or chronic fatigue syndrome; PVFS or post-viral fatigue syndrome or CFIDS or chronic fatigue immune dysfunction syndrome.

2. All types of people at all ages are affected. Severe and debilitating fatigue, painful muscles and joints, disordered sleep, gastric disturbances, poor memory and concentration are commonplace. In many cases, onset is linked to a viral infection. Other triggers may include an operation or an accident, although some people experience a slow, insidious onset.

3. Effects: In some, the effects may be minimal but in a large number, lives are changed drastically. In the young, schooling and higher education can be severely disrupted; in the working population, employment becomes impossible for many. For all, social life and family life become restricted and in some cases severely strained. People may be housebound or confined to bed for months or years.

4. Prognosis: Most people with ME/CFS fall into one of four groups: those who manage to return to completely normal health, (the percentage falling into this category is fairly small: the majority, who tend to follow a fluctuating pattern with both good and bad periods of health; a significant minority, who remain severely affected and may require a great deal of practical and social support and a few, who show continued deterioration, which is unusual. When this occurs, a detailed medical assessment is advisable to rule out other possible diagnoses.

5. Treatment: There is currently no accepted cure and no universally effective treatment.

Source: ME Association

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