Post by Ms B. on Dec 4, 2007 11:38:25 GMT 10
Posted in The Australian (Newspaper) 29th Jan '07. For the original click me the original has a bit extra about symptoms etc.
LYN Wilson has a blunt message for anyone who doubts that chronic fatigue syndrome is a debilitating physical illness. "Why would anyone want to give up their life and their income, for nothing? People who think we're not sick don't have a clue."
The 54-year-old Queensland woman was 37 when she suddenly developed gastroenteritis and began to have trouble staying awake. She was admitted to hospital but doctors were baffled by her symptoms, which included loss of feeling in her legs and difficulty concentrating.
During the next 16 months, Wilson was misdiagnosed with multiple sclerosis and lupus, and was told by one doctor that she only needed to start taking aerobics classes to get fit. "I finally went to a diagnostic specialist who diagnosed me with chronic fatigue."
By then, Wilson was experiencing crippling headaches and neck pain, had trouble following conversations and had to quit her job as a teacher's aide at a kindergarten. "I was devastated. I absolutely loved my job."
Wilson, who wears a neck brace to reduce headaches and walks with a frame, works as a volunteer when she can, helping people with CFS. "Most people I meet, when I tell them what I have, will say, 'Yeah, I get tired like that.' They have no idea. Wearing a neck brace is painful, it's hot, very uncomfortable and it's hardly a fashion statement.
"My daughter's wedding is coming up and I'm dreading having to wear it. Why would I do this if I didn't have to?"
Wilson, like many of the 140,000 Australians who suffer from the affliction, is fed up with people who question whether CFS, sometimes known as myalgic encephalomyelitis, is a real condition.
In the 1980s it became known as the yuppie flu, a vague illness that affected high achievers. Its seemingly unconnected symptoms - including fatigue, joint and muscle pain, disrupted sleep and an inability to concentrate - were questioned by doctors and employers who accused sufferers of being hypochondriacs or malingerers.
Even doctors who believed that the symptoms were real dismissed the condition as a psychological disorder.
In the past five years, however, research by some of the world's leading medical organisations has shown CFS is a crippling, physical condition that affects people of all ages.
The US Centres for Disease Control and Prevention this month launched a campaign to convince the public and medical profession that CFS is a serious illness.
CFS costs the Australian community $525million a year, according to research published in The Medical Journal of Australia. Many sufferers are unable to work and between 25,000 and 35,000 are housebound.
However, doctors and researchers remain deeply divided on how to diagnose and treat the condition.
CFS usually begins with flu-like symptoms but progresses to chronic fatigue. It is not improved by bed rest and exhaustion follows any sort of physical activity.
Most people with CFS develop it after a viral infection such as from the Epstein-Barr virus, which causes glandular fever.
In 2002 the World Health Organisation classified CFS as a neurological disorder and research conducted in the past five years supports the theory that the illness is caused by a disruption in the brain. Anthony Komaroff, a professor of medicine at Harvard Medical School and a spokesman for the CDC campaign, says brain functioning and cell energy metabolism appear impaired in those with CFS.
Last year, James Baraniuk, a researcher at the Georgetown University Medical Centre in Washington, DC, reported that CFS patients have a series of proteins in their spinal cord fluid that are not present in people without the condition. "Our research provides initial evidence that it may be a legitimate neurological disease and that at least part of the pathology involves the central nervous system," Baraniuk says.
Andrew Lloyd, professor of infectious diseases at the University of NSW's school of medical sciences, says researchers are starting to reject previously accepted theories that CFS was caused by an infection or some form of abnormal immune response to an infection.
"Disorders of blood flow, metabolism or muscles have also been crossed off the list. The current thinking is that it's a disorder of the brain. We just don't know where in the brain or exactly what sort of brain chemical disturbance occurs," Lloyd says.
Peter Del Fante, an Adelaide GP who has treated more than 300 patients with CFS, says researchers are increasingly finding physical abnormalities that are only present in people with CFS: "For example, researchers in Japan have found molecular differences in the blood of people with CFS," he says.
While Colin Neathercoat, director of the ME/CFS Association of Australia, welcomes the research, he wants doctors to focus on better ways of treating the condition.
Neathercoat accuses many Australian doctors of advocating outdated and potentially dangerous treatments.
Since 2002, doctors have used treatment guidelines set up by the Royal Australasian College of Physicians, which advocate cognitive behavioural therapy to help patients to cope with the condition, and graded exercise to build up their strength.
Lloyd says CBT helps patients deal with their physical and mental limitations. "CBT is a package deal based on helping patients to understand the pragmatic approach to day-to-day management of fatigue. One of the typical things in CFS is that patients find the stuff that they used to do easily, like running for a couple of kilometres, is not possible. They find that if they walk around the block they feel buggered and it takes them hours or even days to recuperate. That phenomenon often drives patients to think it's a bad idea to do anything physical."
Lloyd says that encouraging patients to perform short bouts of exercise prevents them from pushing themselves too hard. "They need to learn how to avoid that boom-bust cycle, dividing physical and other activities into smaller, short segments."
Neathercoat, however, warns that approach can cause more harm than good. "For some people, they get up and have a shower and that's all they can manage. The more you push these people with work or recreationally, the more severe those symptoms become."
Jim Chambers agrees. Eleven years ago his son Jeremy, a 23-year-old student, developed CFS after a bout of glandular fever.
His condition deteriorated and he spent three years at home, almost bedridden. "On a good day he was able to make his breakfast and not much else," Chambers says. "His quality of life was zero, he just focused on what he had to do to stay alive."
Jeremy remains at home and is unable to work or study. "The prognosis is pretty bleak, Chambers says. "He was a vibrant young man who was a high-distinction student working on his honours. His short-term memory is definitely affected and it's just terribly distressing to have to say goodbye to your dreams as a young person."
Chambers says Jeremy suffered relapses whenever he tried to push himself physically or mentally. "The message we have to get out to parents and teachers is to back off and stop telling kids and teenagers to just push on when they are sick.
"If a kid is usually a go-getter and suddenly they are not performing and they've got nothing left in the tank, then obviously something is wrong. It's better that they take 12 months off to recover rather than pushing on and becoming critically ill and bedridden."
Lloyd admits that graded exercise does not work for all patients. "A lot of GPs looked at the guidelines that were sent out and thought that graded exercise meant that if patients could walk around the block a few times, they should try to walk around the block 10 times the next week. That sort of simplistic formula doesn't work. I have patients who are elite athletes from the Institute of Sport who can still ride for kilometres, but they used to ride for hundreds of kilometres. At the other end of the scale, I have patients who are housebound and their exercise program is a walk to the letterbox and back."
Neathercoat and GPs such as Del Fante are also critical of the way the Australian guidelines define CFS. "The Royal Australasian College of Physicians' guidelines set up in 2002 are so vague that basically anyone with a little bit of fatigue would fit into it," Neathercoat says.
CFS organisations want Australian doctors to follow the Canadian guidelines. Launched in 2003, they diagnose people with CFS only if they have experienced six symptoms including general fatigue, post-exertion fatigue, sleep dysfunction, pain, cognitive impairment and immune or neuroendocrine problems for more than six months.
"We are approaching the Government to adopt the Canadian guidelines, which are also critical of graded exercise as a form of treatment," Neathercoat says.
Del Fante says South Australia has developed its own version of the Canadian guidelines, using post-exertion malaise as the identifying symptom of CFS.
"If they have to lie down in bed, sometimes for days, to recover from physical exertion, that's CFS. There is nothing else that does that to you but CFS. And if you put those people on an exercise program, unless it is very, very slow and minimal, it's extremely dangerous."
ME/CFS Australia is also calling on the medical profession to stop referring to the condition as chronic fatigue syndrome and to adopt the name myalgic encephalomyelitis.
"The view of most patient advocacy groups around the world is that not only does the name chronic fatigue syndrome trivialise the condition, but the principal symptom may not be fatigue," Neathercoat says.
"There are so many more symptoms to the illness. Changing the name will help people to finally accept that this condition is very real and very serious."
LYN Wilson has a blunt message for anyone who doubts that chronic fatigue syndrome is a debilitating physical illness. "Why would anyone want to give up their life and their income, for nothing? People who think we're not sick don't have a clue."
The 54-year-old Queensland woman was 37 when she suddenly developed gastroenteritis and began to have trouble staying awake. She was admitted to hospital but doctors were baffled by her symptoms, which included loss of feeling in her legs and difficulty concentrating.
During the next 16 months, Wilson was misdiagnosed with multiple sclerosis and lupus, and was told by one doctor that she only needed to start taking aerobics classes to get fit. "I finally went to a diagnostic specialist who diagnosed me with chronic fatigue."
By then, Wilson was experiencing crippling headaches and neck pain, had trouble following conversations and had to quit her job as a teacher's aide at a kindergarten. "I was devastated. I absolutely loved my job."
Wilson, who wears a neck brace to reduce headaches and walks with a frame, works as a volunteer when she can, helping people with CFS. "Most people I meet, when I tell them what I have, will say, 'Yeah, I get tired like that.' They have no idea. Wearing a neck brace is painful, it's hot, very uncomfortable and it's hardly a fashion statement.
"My daughter's wedding is coming up and I'm dreading having to wear it. Why would I do this if I didn't have to?"
Wilson, like many of the 140,000 Australians who suffer from the affliction, is fed up with people who question whether CFS, sometimes known as myalgic encephalomyelitis, is a real condition.
In the 1980s it became known as the yuppie flu, a vague illness that affected high achievers. Its seemingly unconnected symptoms - including fatigue, joint and muscle pain, disrupted sleep and an inability to concentrate - were questioned by doctors and employers who accused sufferers of being hypochondriacs or malingerers.
Even doctors who believed that the symptoms were real dismissed the condition as a psychological disorder.
In the past five years, however, research by some of the world's leading medical organisations has shown CFS is a crippling, physical condition that affects people of all ages.
The US Centres for Disease Control and Prevention this month launched a campaign to convince the public and medical profession that CFS is a serious illness.
CFS costs the Australian community $525million a year, according to research published in The Medical Journal of Australia. Many sufferers are unable to work and between 25,000 and 35,000 are housebound.
However, doctors and researchers remain deeply divided on how to diagnose and treat the condition.
CFS usually begins with flu-like symptoms but progresses to chronic fatigue. It is not improved by bed rest and exhaustion follows any sort of physical activity.
Most people with CFS develop it after a viral infection such as from the Epstein-Barr virus, which causes glandular fever.
In 2002 the World Health Organisation classified CFS as a neurological disorder and research conducted in the past five years supports the theory that the illness is caused by a disruption in the brain. Anthony Komaroff, a professor of medicine at Harvard Medical School and a spokesman for the CDC campaign, says brain functioning and cell energy metabolism appear impaired in those with CFS.
Last year, James Baraniuk, a researcher at the Georgetown University Medical Centre in Washington, DC, reported that CFS patients have a series of proteins in their spinal cord fluid that are not present in people without the condition. "Our research provides initial evidence that it may be a legitimate neurological disease and that at least part of the pathology involves the central nervous system," Baraniuk says.
Andrew Lloyd, professor of infectious diseases at the University of NSW's school of medical sciences, says researchers are starting to reject previously accepted theories that CFS was caused by an infection or some form of abnormal immune response to an infection.
"Disorders of blood flow, metabolism or muscles have also been crossed off the list. The current thinking is that it's a disorder of the brain. We just don't know where in the brain or exactly what sort of brain chemical disturbance occurs," Lloyd says.
Peter Del Fante, an Adelaide GP who has treated more than 300 patients with CFS, says researchers are increasingly finding physical abnormalities that are only present in people with CFS: "For example, researchers in Japan have found molecular differences in the blood of people with CFS," he says.
While Colin Neathercoat, director of the ME/CFS Association of Australia, welcomes the research, he wants doctors to focus on better ways of treating the condition.
Neathercoat accuses many Australian doctors of advocating outdated and potentially dangerous treatments.
Since 2002, doctors have used treatment guidelines set up by the Royal Australasian College of Physicians, which advocate cognitive behavioural therapy to help patients to cope with the condition, and graded exercise to build up their strength.
Lloyd says CBT helps patients deal with their physical and mental limitations. "CBT is a package deal based on helping patients to understand the pragmatic approach to day-to-day management of fatigue. One of the typical things in CFS is that patients find the stuff that they used to do easily, like running for a couple of kilometres, is not possible. They find that if they walk around the block they feel buggered and it takes them hours or even days to recuperate. That phenomenon often drives patients to think it's a bad idea to do anything physical."
Lloyd says that encouraging patients to perform short bouts of exercise prevents them from pushing themselves too hard. "They need to learn how to avoid that boom-bust cycle, dividing physical and other activities into smaller, short segments."
Neathercoat, however, warns that approach can cause more harm than good. "For some people, they get up and have a shower and that's all they can manage. The more you push these people with work or recreationally, the more severe those symptoms become."
Jim Chambers agrees. Eleven years ago his son Jeremy, a 23-year-old student, developed CFS after a bout of glandular fever.
His condition deteriorated and he spent three years at home, almost bedridden. "On a good day he was able to make his breakfast and not much else," Chambers says. "His quality of life was zero, he just focused on what he had to do to stay alive."
Jeremy remains at home and is unable to work or study. "The prognosis is pretty bleak, Chambers says. "He was a vibrant young man who was a high-distinction student working on his honours. His short-term memory is definitely affected and it's just terribly distressing to have to say goodbye to your dreams as a young person."
Chambers says Jeremy suffered relapses whenever he tried to push himself physically or mentally. "The message we have to get out to parents and teachers is to back off and stop telling kids and teenagers to just push on when they are sick.
"If a kid is usually a go-getter and suddenly they are not performing and they've got nothing left in the tank, then obviously something is wrong. It's better that they take 12 months off to recover rather than pushing on and becoming critically ill and bedridden."
Lloyd admits that graded exercise does not work for all patients. "A lot of GPs looked at the guidelines that were sent out and thought that graded exercise meant that if patients could walk around the block a few times, they should try to walk around the block 10 times the next week. That sort of simplistic formula doesn't work. I have patients who are elite athletes from the Institute of Sport who can still ride for kilometres, but they used to ride for hundreds of kilometres. At the other end of the scale, I have patients who are housebound and their exercise program is a walk to the letterbox and back."
Neathercoat and GPs such as Del Fante are also critical of the way the Australian guidelines define CFS. "The Royal Australasian College of Physicians' guidelines set up in 2002 are so vague that basically anyone with a little bit of fatigue would fit into it," Neathercoat says.
CFS organisations want Australian doctors to follow the Canadian guidelines. Launched in 2003, they diagnose people with CFS only if they have experienced six symptoms including general fatigue, post-exertion fatigue, sleep dysfunction, pain, cognitive impairment and immune or neuroendocrine problems for more than six months.
"We are approaching the Government to adopt the Canadian guidelines, which are also critical of graded exercise as a form of treatment," Neathercoat says.
Del Fante says South Australia has developed its own version of the Canadian guidelines, using post-exertion malaise as the identifying symptom of CFS.
"If they have to lie down in bed, sometimes for days, to recover from physical exertion, that's CFS. There is nothing else that does that to you but CFS. And if you put those people on an exercise program, unless it is very, very slow and minimal, it's extremely dangerous."
ME/CFS Australia is also calling on the medical profession to stop referring to the condition as chronic fatigue syndrome and to adopt the name myalgic encephalomyelitis.
"The view of most patient advocacy groups around the world is that not only does the name chronic fatigue syndrome trivialise the condition, but the principal symptom may not be fatigue," Neathercoat says.
"There are so many more symptoms to the illness. Changing the name will help people to finally accept that this condition is very real and very serious."
