Weighed Down

Weighed Down

http://smh.com.au/news/health-and-fitness/weighed-down/2006/03/01/1141191731036.html


Chronic fatigue sufferers have to battle disbelief as well as disability, writes Fran Molloy.

People treat chronic fatigue syndrome like a religion," says physiotherapist Christine Hunter, head of the Alison Hunter Memorial Foundation. "They say, 'I'm not a believer."'

This is particularly galling for Hunter, whose 19-year-old daughter Alison died in 1996 from complications arising from myalgic encephalomyelitis (ME) - also called chronic fatigue syndrome (CFS).

Alison Hunter suffered severe neurological problems for 10 years. "Some medical staff would trivialise her illness, probably because chronic fatigue has such an appalling name. They joke, "I get that on Mondays,"' Christine Hunter says.

But chronic fatigue is no joke. Often referred to by the shorthand term ME/CFS, the severity can range from mild to extremely debilitating.

However - like many illnesses without a definitive blood or urine test used in diagnosis, ME/CFS sufferers often struggle to receive diagnosis and appropriate advice.

The current Australian clinical guidelines recommend that treatment include graded exercise and cognitive behaviour therapy, something patient support groups vehemently oppose.

ME sufferer Jodi Bassett has statements from 48 people who described the negative impact that graded exercise had on their condition, including several who had dropped out of clinical trials that later led to published articles recommending exercise.

Christine Hunter says that much of the published research is unreliable.

Although growing evidence suggests the illness is triggered within the body's immune system and is primarily a neurological disorder, Hunter believes most research funding is directed towards psychological research. "It's cheaper to run a few surveys than look for a biological cause," she says.

One of the few Australian researchers in the area who is looking at a biological basis for ME/CFS is Professor Andrew Lloyd, of the University of NSW, an infectious diseases physician.

He has no doubt that it is a crippling disorder. "The level of disability in patients with chronic fatigue syndrome is comparable, or even worse, than people with significant multiple sclerosis or rheumatoid arthritis," Lloyd says.

Yet, after years of research, Lloyd has not been able to identify a biological basis for the illness.

"Whatever this illness is, it clearly causes a lot of impairment. And yet, if you do the standard laboratory tests, blood counts, look for markers of inflammation, sample the spinal fluid, check the liver and thyroid, they are all perfectly normal."