News Video | Policy | GPs | Hospitals | Medical | Mental Health | Welfare | Search

 


Stigma of chronic fatigue illness adds to suffering

Stigma of chronic fatigue illness adds to suffering


A new survey shows people with debilitating Chronic Fatigue Syndrome, or ME (Myalgic Encephalopathy) feel misunderstood and stigmatised, and more public education about the condition is needed.

Dr Don Baken, a clinical psychologist at the School of Psychology at Massey University’s Manawatü campus who has researched the issue, says the impact on
sufferers of Myalgic Encephalopathy/Chronic Fatigue Syndrome (ME/CFS) can be devastating, and feeling stigmatised just adds to this.

He carried out a survey of 221 people with ME at the request of the Associated New Zealand ME Society (ANZMES) to better understand the impact of the condition, which affects around 20,000 New Zealanders.

The survey findings are being released to coincide with ME International Awareness Day on May 12.

ME/CFS, also known as Royal Free Disease, Chronic Fatigue Immune Disorder, Tapanui flu and Yuppie flu, is understood to result from changes to the immune system in response to an initial infection. Sufferers can be bed-ridden for weeks or months with typical flu-like symptoms such as fever, sore throat, swollen glands, muscle and joint pains. They also suffer mental sluggishness, sleep disturbance and extreme fatigue. Symptoms come and go over a period of time, and even between relapses the person may still feel very tired and unwell.

“People with ME/CFS often feel that it's impact is poorly understood and trivialised,” Dr Baken says.


Survey respondents reported a very low quality of life, he says. “The average respondent was in the bottom 10 per cent of the population for measures such as the NIH PROMIS physical health scale [a measure of physical quality of life developed by the National Institute of Health in the US].”

More than three quarters of respondents reported struggling with basic everday tasks and meeting family responsibilities. “They also rated their executive functioning to be extremely low, for abilities such as planning, organising, strategising, paying attention to and remembering details, and managing time and space,” says Dr Baken.

Two thirds of respondents had trouble counting the correct amount of money to make purchases, and 85 per cent had problems reading and following directions, such as those of a new medication.

Many respondents felt stigmatised by the condition. Half indicated that they often felt embarrassed by their physical limitations and about a third felt embarrassed about the disease itself. Only about 15 per cent said that they never felt blamed for their condition by others, he says.

Dr Baken says those most ill would not have been well enough to complete the survey and the results would have been even worse if the most severely affected were included.

“What’s particularly interesting about all these findings is that this group reported worse scores than those with other neurological conditions such as Parkinson’s and Multiple Sclerosis,” he says.

“Because of the nature of the condition and the stigma that many feel because of it, it’s difficult for this group to advocate for themselves,” he says. “More needs to be done to understand the impact of this condition and how society can support the people who suffer from it.”

Maintaining friendships with ME sufferers, even though they may feel too unwell to go out, was one way people can show their acceptance and give support, he says.

President of ANZMES Heather Wilson says the results of the survey confirm anecdotal evidence about the experiences of people with ME/CFS.

She says the “good news” is that international biological research is making significant discoveries about abnormalities in the neurological, immune and energy-producing systems of people with ME.

“However, until these have been translated into treatments that improve the quality of life of people with ME/CFS it is important that all those involved, including friends and family, the health system, and societal support systems, understand the true impact of this serious, devastating condition and provide
the support that they can.”

Ends

© Scoop Media

 
 
 
 
 
Culture Headlines | Health Headlines | Education Headlines

 

A Series Of Tubes: 150 Years Of The Cook Strait Cable

“It was a momentous achievement for its time. The successful connection came on the third attempt at laying the cable, and followed a near disaster when the first cable snapped - almost destroying the ship Weymouth in the process,” says Ms Adams. More>>

ALSO:

February 2017: Guns N' Roses - New Zealand Dates Announced

Founder Axl Rose and former members, Slash and Duff McKagan have regrouped for one of the century’s most anticipated tours... Rolling Stone said: "This was the real thing, the thing we'd all been waiting for: the triumphant return of one of the most important bands to cross rock music history. And it happened in our lifetime.” More>>

Werewolf: Brando, Peckinpah And Billy The Kid

Gordon Campbell: Initially, One-Eyed Jacks was supposed to have been directed by Stanley Kubrick from a script by Sam Peckinpah – yet it quickly became Brando’s baby... More>>

Book Awards: ANZAC Heroes Wins Margaret Mahy Book Of The Year

“Simply stunning, with gold-standard production values,” say the judges of the winner of this year’s Margaret Mahy Book of the Year Award in the prestigious New Zealand Book Awards for Children and Young Adults. ANZAC Heroes is also the winner of the Elsie Locke Award for the Best Book in the Non-Fiction category. More>>

Baby Animals: Hamilton Zoo Rhino Calf Named

Hamilton Zoo’s latest rhino calf has been named Samburu and he's being celebrated with a unique zoo experience... Samburu arrived after his mother Kito’s 16-month pregnancy and the calf brings the number of white rhinos at Hamilton Zoo to six. More>>

Gordon Campbell: On The Rio Olympics

Were you pretty excited earlier this week when Vietnam won its first ever Olympic gold medal? Hanoi, reportedly, went wild... Perhaps we should keep Vietnam’s golden moment in mind as we gear up for saturation media coverage of New Zealand’s medal achievements in Rio. More>>

ALSO:

Get More From Scoop

 
 

LATEST HEADLINES

 
 
 
 
Health
Search Scoop  
 
 
Powered by Vodafone
NZ independent news