From The Shields Gazette, 13 Mat 2011 (story by Angela Reed).
SUFFERERS of Myalgic Encephalomyelitis (ME) are often left feeling hopeless in the absence of proper diagnosis and treatment.
To coincide with ME Awareness Week, we spoke to two women from South Tyneside who have battled the illness for more than three decades between them.
Attitudes towards people with ME may be changing, but sadly, the pace of diagnosis, treatment and cure is failing to keep up.
Once known as “yuppie flu” and branded a psychological condition, the World Health Organisation now classes ME as a neurological illness.
But it’s still not known exactly what causes it to develop.
Myalgic Encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), varies widely in its severity, but symptoms range from extreme fatigue and muscle pain to memory loss, fits and paralysis.
In its most severe form, affecting about 25 per cent of the 250,000 sufferers in the UK, ME leaves people housebound and dependent on carers.
Barbara Kell, 57, from South Shields, is one of these.
She started feeling ill about 10 years ago, but put the sudden tiredness down to her age and tried to ignore it for a while.
It wasn’t until she collapsed unconscious during a shopping trip in town in May 2004 that she started to take it more seriously.
The married mum-of-two said: “When I was taken to the doctors, they did blood tests and discovered I was suffering from anaemia, which they treated me for – but I didn’t get better.
“I was going round in circles, having blood tests with no diagnosis, because everything was coming back negative.
“I got in touch with the Sunderland and South Tyneside ME/CFS Support Group because my daughter and I had begun to suspect I had ME, but I didn’t know where to go for a diagnosis.”
She was referred to a specialist at Sunderland Royal Hospital, who diagnosed the condition and gave her instructions on how to manage it.
She then found out about Dr Sarah Myhill, based in Wales, who specialises in ME treatment, and sought her advice.
“She’s helped a lot of my symptoms, but I can’t get past some of them, particularly the tiredness,” she said.
Barbara spends most days at home and is cared for by her eldest daughter, who gave up work four years ago to look after her.
“It just rules the whole of your life,” she said. “You can’t plan things because you don’t know how you’re going to be on any given day. I just don’t go out now.”
Pauline Donaldson, from Westoe, South Shields, is also housebound and says the loss of normal family life is the hardest thing to deal with.
She was running a successful business when she was struck down with ME in her 30s.
“I took ill with glandular fever and then developed ME,” said the married mum-of-two.
“I subsequently lost a successful business, many friends and a normal lifestyle.
“Over the years I have tried many suggested treatments, mainly alternative, but that Holy Grail still escapes me.
“Nowadays I am mostly housebound and use a motorised scooter or wheelchair on the rare occasions I am able to get out.
“This illness has robbed me and my family of our quality of life.”
It took her four years to be diagnosed with ME, and she finds it frustrating that people are still facing the same struggle she did more than 20 years ago.
As a member of the management committee of Sunderland and South Tyneside ME/CFS Support Group, she speaks to desperate sufferers and their families every day.
“What does it take to get some action – and why has nothing changed?” she said.
“I am still getting phone calls from people who are waiting six months for a diagnosis, and it is not acceptable.
“In that time, you do everything wrong, because you are not told what it is and you just keep going, because you think it isn’t serious.” Pauline’s condition has deteriorated in the last three years, and a good day is when she is feeling just 30 per cent normal.
She said: “A lot of people don’t realise that ME can get this bad, and certainly people don’t realise that people can die from this illness.”
The Sunderland and South Tyneside ME/CFS Support Group has lobbied MPs to try to influence a change in policies.
Barbara said: “We are literally left with no hope at all of proper diagnosis and treatment.
“I have been ill for 10 years, and for 10 years there have been 250,000 people in the country with ME.
“We need more to be put into medical research.”
In January, the Medical Research Council announced £1.5m funding for research into the causes of ME.
While it often develops after a virus, like flu or glandular fever, the condition can also occur gradually and for no obvious reason.
Some studies have suggested genetics may be involved, and vaccinations or environmental toxins are occasionally identified as possible triggers, as are physical injury and trauma.
The Sunderland and South Tyneside ME/CFS Support Group can be contacted on 455 6959 or online at www.mecfs.co.uk
‘Is ME becoming a forgotten disease?’
Hmm… [hard hat on now] I would have to say no it isn’t. If anything it’s profile has become more publically, and most importantly, professionally raised than ever before – thanks to the huge efforts on the part of representative organisations and patients themselves, and some notable researchers and medical professionals.
However, ‘Myalgic Encephalomyelitis’ has – in part – lost its’ prominence as a disease name and encompassing definition. There are some good and some not so good reasons for this…
‘…the World Health Organisation now classes ME as a neurological illness…’ hmm… well it has done for a wee while actually, but their recognition – in my own naive and unprofessional mind – means diddly squat in view of the above.
Again, there are good and not so good reasons for this…
There is much to be said about the old adage ‘what’s in a name’ for some patient advocates and for patients themselves methinks. But the proof of any name, including ‘benign Myalgic Encephalomyelitis’ and the others, will be in the development of proper diagnostic testing, and not a sole dependence on questionable criteria of exclusion.
Apart from that – the focus on these patient experiences, I thought was good. 🙂