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Petition for Parliament brings hope
Friday 11 November 2011
Petition for Parliament brings hope
• Howick and Pakuranga Times
SLUMPED with exhaustion and a feeling of helplessness, Wendy Matthews lay in bed for seven years.
“I just felt I had no energy to expend at all,” says Mrs Matthews. “At times I couldn’t feed myself and turn over.
“There was green goo coming out of my eyes, and the longest I went without a bath, hair wash or teeth-clean was three months.”
The Brookby resident is the driving force behind a petition to Parliament to raise public awareness of chronic fatigue syndrome (CFS), also known as Myalgic Encephalopathy (ME).
Its aims are to establish dedicated research, assessment, treatment and respite care facilities for chronic fatigue sufferers; provide support and funding for patients and carers; promote education for health professionals and the public on the illness; and address the misconception that the condition is a psychological illness.
Mrs Matthews has had CFS for 17 years and says it is a complex condition that is often misunderstood by members of the public, and even the medical profession.
“It’s enough dealing with this [illness] without facing the scepticism,” says the 56-year-old, who runs a support group for East Auckland CFS sufferers of the syndrome.
“Cancer fatigue is really similar, but chronic fatigue doesn’t last for six months – it lasts for years. You don’t want sympathy, but you want a bit of understanding.”
The condition is characterised by a number of symptoms, the most common of which is exhaustion after minimal activity.
Others include muscle and joint pain, gastrointestinal problems, depression, drug and alcohol intolerance, visual problems, and non-refreshing sleep.
“This is a family illness,” says Mrs Matthews. “It interferes with friendships and relationships. It’s really quite intense and unrelenting, and it affects everybody. You live in a very confined, narrow sphere and that keeps you well.”
“People without education make assumptions, and assumptions aren’t always right,” says Mrs Matthews, who has a blended family of seven children.
“That’s why we need the education. People think you look fine, so think you should be doing more.
“What they don’t understand is the way you keep well is by keeping within boundaries. You look alright as long as you’re not doing too much.”
Dr Vallings, who has more than 30 years’ experience in the field of CFS, says that for about five per cent of people the illness is completely debilitating.
“They’re often totally bedridden and need a whole lot of care,” she told the Times.
“The really severe need to be fed. In some parts of New Zealand there are some good respite care [facilities] available. In others, there’s zilch.”
Medication, managing stress and sleep, sensible eating and vitamin supplements can help people cope better with the condition.
“The illness is due to persistent overactivity of the immune system,” says Dr Vallings.
“It’s triggered off initially by a viral illness in a genetically vulnerable individual.”
Through her role as a CFS support group co-ordinator, Mrs Matthews has come across a number of people who were completely at their wits’ end.
“I’ve seen some really sad situations,” she says.
“These people are so isolated. They’re eating cold food out of cans and every day is like trudging though mud.”
More than 2000 signatures have been added to the petition so far, and she hopes to fill many more pages by the time it winds up on November 16.
“It’s been fantastic and the most amazing way of connecting people,” says Mrs Matthews.
“I’ve been out there standing on street corners. You meet these people and they are so grateful for the information. There’s hope for anybody, so I really want people to not give up.”
For more information on CFS and to sign the petition, log on to www.anzmes.org.nz. Hard copies are available at Botany, Highland Park and Pakuranga libraries, as well as selected doctor’s practices and pharmacies.
The above originally appeared here.
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