What is Chronic Fatigue and what causes it?

What is Chronic Fatigue and what causes it?

WORLD-first research in Adelaide that involves taking the blood samples of donors every seven minutes aims to unlock the mystery of a debilitating illness that has no cure or treatment.

Thousands of samples taken for the study are now being stored in a freezer to allow each one to be sructinised during a painstaking process, expected to take about a year.

Senior research fellow Michael Musker said the work being done at the South Australian Health and Medical Research Institute to try and understand Chronic Fatigue Syndrome (CFS) had “world-wide significance”.

Dr Musker says because the cause of CFS — or Myalgic Encephalomyelitis (ME) — isn’t known, there isn’t a cure or any officially approved medical treatments.

“If we can establish what it is and how it affects the body, we may be able to find a solution,” he said.

“The work we’re now doing hasn’t been done anywhere else and involves taking blood samples from 30 people with CFS (as well as 15 who don’t) every seven minutes, over an eight-hour period to look for inflammatory markers, and hopefully find some answers.

“We believe that we can make a major contribution to a participant’s quality of life by finding

the biological basis of their clinical symptoms ... (then) we may be able to target treatments.”

CFS affects tens of thousands of Australians each year and is described as being like running a marathon while having a severe case of glandular fever, on top of the flu. The symptoms can last for several years.

“If you try think of a day when you’ve felt totally exhausted – more so than even before – and then try to imagine being stuck in that mode every day for at least six months, you’ll have some idea of what it is like to have CFS,” Dr Musker said.

“We believe that we can make a major contribution to a participant’s quality of life by finding the biological basis of their clinical symptoms ... (then) we may be able to target treatments.”

He says the illness is commonly misunderstood and as a result can have a huge psychological impact on people, who can become isolated from friends and family.

“There is no test for the illness and it can be difficult to get a diagnosis — patients as well as doctors can become frustrated as they can’t find an explanation for the symptoms,” Dr Musker said.

Film trailer: Unrest Film trailer: Unrest

One person who knows this first hand is Penelope McMillan, president of the SA branch of ME/CFS Australia, who has given her blood for the study.

“People experience ME/CFS in varying degrees of severity ... those most profoundly affected survive in a darkened, silent room, unable to leave their bed and experiencing a wide range of painful and disturbing symptoms,” she said.

“(This illness) destroys careers, tears families apart, shortens lives and holds people hostage to a painful chronic illness that has no recognised treatment and few knowledgeable doctors.

“I have no expectation of an imminent ‘cure’ but great hopes that current research will point the way to reducing the symptoms and allowing those of us in the ME community to increase the scope of our daily lives.”

TO raise awareness of the illness, a film called Unrest, which follows the real-life story of a young, about-to-be-married woman who is left bedridden when she is struck down by the illness, will be shown at the University of South Australia on November 9.

For tickets, go to www.trybooking.com/323807

Mystery illness

FOR those who haven’t suffered from – or had someone close to them struck down by it – Chronic Fatigue Syndrome can be hard to grasp and understand.

Physically a person looks fine but everyday tasks such as showering, cleaning teeth, talking or reading can make a person more unwell.

“People who are profoundly ill with Myalgic Encephalomyelitis/CFS experience disruption to every aspect of their functioning,” says ME/CFS Australia’s SA president Penelope McMillan.

“People who are more severely ill cannot speak, read or write ... this creates tremendous isolation.”

And because there isn’t a test for it, it can be difficult for doctors to make a diagnosis.

It’s for this reason, 28-year-old Jennifer Brea, a Harvard PhD student about to be married, turned the camera on herself to document her life when she was struck down with the illness.

The resulting film, Unrest, will be shown at the University of SA, in early November.

“(She) discovers a hidden world of millions confined to their homes and bedrooms,” states the synopsis of the film.

“At its core, Unrest is a love story. Together, Jen and her new husband, Omar, must find a way to build a life and fight for a cure.

“Their struggle to forge their relationship while dealing with her mysterious illness is at once heartbreaking, inspiring and funny.”

Ms McMillan says the film is incredibly important in terms of raising awareness of the illness.

“It is urgent the SA community becomes better informed about this common and debilitating illness,” she said.

Unrest will be shown at the University of South Australia on November 9.

For tickets, go to www.trybooking.com/323807