David Baxter PhD
Late Founder
Sick and tired of being called lazy, chronic fatigue sufferers fight back
by CARLY WEEKS, Globe and Mail
Sunday, March 20, 2011
A serious health condition takes a physical, psychological and even financial toll on anyone. But those who have been diagnosed with chronic fatigue syndrome face an additional challenge: convincing the world the disorder exists.
The serious extent of the problem was brought to light recently when a federal worker won a grievance against her employer for forcing her to work in a physically demanding job, despite knowing the woman suffered from chronic fatigue syndrome. The case exposes deeply held stereotypes about chronic fatigue syndrome and how little recognition there is for the disease.
Chronic fatigue syndrome, or CFS, is a complex disease characterized by debilitating fatigue that doesn?t go away even after a person gets a lot of rest, as well as a variety of other symptoms that persist for months, including sore throat, joint and muscle pain or headaches.
There is no blood test or other exam that can positively identify CFS. Rather, CFS is a diagnosis of exclusion, meaning it is made only after doctors have ruled out other possible conditions.
The medical community also doesn?t have a clear understanding of what causes the disorder and how it develops.
As a result of all these elements, many people with CFS are often faced with misconceptions, and stereotypes ? for instance, that it?s not a real condition and that anyone who has it is simply lazy, tired or unmotivated.
The extent of the prejudices against CFS sufferers came to light recently in a hearing before the Public Service Labour Relations Board, a tribunal that hears grievances from federal employees.
Teresa Panacci, a chronic fatigue sufferer who works at the Canadian Border Services Agency (CBSA) in Mississauga, launched a grievance after her employer moved her from a sedentary position behind a desk in 2004 to a job in the mail room where she had to lift and move heavy parcels.
She told her boss she didn?t want to be transferred, but was told she had no choice, according to Patricia Harewood, a grievance and adjudication officer with the Public Service Alliance of Canada who represented Ms. Panacci at the hearing. Ms. Panacci worked in the mailroom for several months and eventually collapsed on the job. She then went on sick leave for nearly a year.
CBSA had asked Health Canada to perform a ?fitness to work? evaluation once Ms. Panacci complained about being moved to the more physically demanding position. Ms. Panacci was examined by an independent doctor who determined she did seem to meet the criteria for chronic fatigue syndrome.
Despite this, the final report assessing Ms. Panacci?s condition, written by a doctor who didn?t personally examine her, said there didn?t seem to be any physical reason why she couldn?t work in the mail room and suggested the problem was her attitude, not chronic fatigue syndrome.
The assessment report stated: ?There is a matter of motivation and job satisfaction involved more than a medical condition,? according to evidence presented at Ms. Panacci?s hearing.
The report noted that since Ms. Panacci felt better when not working in the postal department, she should apply for a new, more satisfying job and help end ?a tendency to medicalize such issues.?
Ms. Panacci eventually applied for, and got, a less strenuous job in the same department, although she wasn?t able to return to work full-time until 2009.
The adjudicator ruled in her favour and ordered her employer to reimburse her for time lost to sick leave and the four years in which she was only able to work part-time because of her CFS symptoms.
Details of the case, published on the labour relations board website in January, demonstrate how pervasive negative stereotypes against people with CFS are.
?There?s definitely a stigma that is attached to certain illnesses,? Ms. Harewood said. ?More and more we are having to litigate these cases because of the stereotypes ? and the fact there isn?t consensus in the medical community as to whether, in fact, they are recognized as disabilities.?
Jody Smith is all too familiar with the negative stereotypes attached to CFS. When she first approached her doctor years ago with debilitating fatigue and other serious symptoms that interfered with her everyday life, he told her that she should stay in bed, since that is the only thing that made her feel better.
Ms. Smith went to see a naturopath who believed that she indeed suffered from chronic fatigue syndrome and recommended various treatments. Four years later, Ms. Smith said she has seen a substantial improvement and is able to work from home, writing health-related articles, as well as connecting with other CFS sufferers on the website Empowerher.com.
Although some people do recognize CFS as a legitimate medical condition, Ms. Smith said she and countless other people with the disorder are accused of faking it. She describes CFS as an invisible disease: Many people don?t acknowledge it?s real; those who have it are often bedridden and become isolated, and large segments of the medical community ignore it, she said.
?There are some terrific doctors out there and there are some tremendous naturopaths ? but from where I sit, in general, the medical community does not see us,? Ms. Smith said.
Margaret Parlor, president of the National ME/FM Action Network, an advocacy group for people with CFS and fibromyalgia, said part of the reason the disorder doesn?t have broad recognition is it?s difficult for others to understand it.
Friends and family of CFS patients may tell them they should exercise more or be more active, not understanding why the individual seems so tired all the time.
?The severe ones that are severely fatigued, these people talk about just having the energy to clean their teeth and comb their hair in the morning,? said Eva Libman, associate director of behavioural psychotherapy and research unit in the psychiatry department at Jewish General Hospital. ?They just find it very challenging just to get through the day.?
Many people with CFS have problems maintaining jobs and relationships because they don?t have the energy, a problem that many interpret as laziness or lack of motivation. As a result, some CFS sufferers lose their jobs and may become isolated from personal relationships, Ms. Parlor said.
She added that people diagnosed with CFS often have problems maintaining proper nutrition because they have difficulty mustering the energy to regularly shop for groceries and prepare meals.
?It?s a whole cascade of effects that can happen,? Ms. Parlor said. ?We still see it in a large extent because the medical cause of this is not understood and there?s not a test for it.?
by CARLY WEEKS, Globe and Mail
Sunday, March 20, 2011
A serious health condition takes a physical, psychological and even financial toll on anyone. But those who have been diagnosed with chronic fatigue syndrome face an additional challenge: convincing the world the disorder exists.
The serious extent of the problem was brought to light recently when a federal worker won a grievance against her employer for forcing her to work in a physically demanding job, despite knowing the woman suffered from chronic fatigue syndrome. The case exposes deeply held stereotypes about chronic fatigue syndrome and how little recognition there is for the disease.
Chronic fatigue syndrome, or CFS, is a complex disease characterized by debilitating fatigue that doesn?t go away even after a person gets a lot of rest, as well as a variety of other symptoms that persist for months, including sore throat, joint and muscle pain or headaches.
There is no blood test or other exam that can positively identify CFS. Rather, CFS is a diagnosis of exclusion, meaning it is made only after doctors have ruled out other possible conditions.
The medical community also doesn?t have a clear understanding of what causes the disorder and how it develops.
As a result of all these elements, many people with CFS are often faced with misconceptions, and stereotypes ? for instance, that it?s not a real condition and that anyone who has it is simply lazy, tired or unmotivated.
The extent of the prejudices against CFS sufferers came to light recently in a hearing before the Public Service Labour Relations Board, a tribunal that hears grievances from federal employees.
Teresa Panacci, a chronic fatigue sufferer who works at the Canadian Border Services Agency (CBSA) in Mississauga, launched a grievance after her employer moved her from a sedentary position behind a desk in 2004 to a job in the mail room where she had to lift and move heavy parcels.
She told her boss she didn?t want to be transferred, but was told she had no choice, according to Patricia Harewood, a grievance and adjudication officer with the Public Service Alliance of Canada who represented Ms. Panacci at the hearing. Ms. Panacci worked in the mailroom for several months and eventually collapsed on the job. She then went on sick leave for nearly a year.
CBSA had asked Health Canada to perform a ?fitness to work? evaluation once Ms. Panacci complained about being moved to the more physically demanding position. Ms. Panacci was examined by an independent doctor who determined she did seem to meet the criteria for chronic fatigue syndrome.
Despite this, the final report assessing Ms. Panacci?s condition, written by a doctor who didn?t personally examine her, said there didn?t seem to be any physical reason why she couldn?t work in the mail room and suggested the problem was her attitude, not chronic fatigue syndrome.
The assessment report stated: ?There is a matter of motivation and job satisfaction involved more than a medical condition,? according to evidence presented at Ms. Panacci?s hearing.
The report noted that since Ms. Panacci felt better when not working in the postal department, she should apply for a new, more satisfying job and help end ?a tendency to medicalize such issues.?
Ms. Panacci eventually applied for, and got, a less strenuous job in the same department, although she wasn?t able to return to work full-time until 2009.
The adjudicator ruled in her favour and ordered her employer to reimburse her for time lost to sick leave and the four years in which she was only able to work part-time because of her CFS symptoms.
Details of the case, published on the labour relations board website in January, demonstrate how pervasive negative stereotypes against people with CFS are.
?There?s definitely a stigma that is attached to certain illnesses,? Ms. Harewood said. ?More and more we are having to litigate these cases because of the stereotypes ? and the fact there isn?t consensus in the medical community as to whether, in fact, they are recognized as disabilities.?
Jody Smith is all too familiar with the negative stereotypes attached to CFS. When she first approached her doctor years ago with debilitating fatigue and other serious symptoms that interfered with her everyday life, he told her that she should stay in bed, since that is the only thing that made her feel better.
Ms. Smith went to see a naturopath who believed that she indeed suffered from chronic fatigue syndrome and recommended various treatments. Four years later, Ms. Smith said she has seen a substantial improvement and is able to work from home, writing health-related articles, as well as connecting with other CFS sufferers on the website Empowerher.com.
Although some people do recognize CFS as a legitimate medical condition, Ms. Smith said she and countless other people with the disorder are accused of faking it. She describes CFS as an invisible disease: Many people don?t acknowledge it?s real; those who have it are often bedridden and become isolated, and large segments of the medical community ignore it, she said.
?There are some terrific doctors out there and there are some tremendous naturopaths ? but from where I sit, in general, the medical community does not see us,? Ms. Smith said.
Margaret Parlor, president of the National ME/FM Action Network, an advocacy group for people with CFS and fibromyalgia, said part of the reason the disorder doesn?t have broad recognition is it?s difficult for others to understand it.
Friends and family of CFS patients may tell them they should exercise more or be more active, not understanding why the individual seems so tired all the time.
?The severe ones that are severely fatigued, these people talk about just having the energy to clean their teeth and comb their hair in the morning,? said Eva Libman, associate director of behavioural psychotherapy and research unit in the psychiatry department at Jewish General Hospital. ?They just find it very challenging just to get through the day.?
Many people with CFS have problems maintaining jobs and relationships because they don?t have the energy, a problem that many interpret as laziness or lack of motivation. As a result, some CFS sufferers lose their jobs and may become isolated from personal relationships, Ms. Parlor said.
She added that people diagnosed with CFS often have problems maintaining proper nutrition because they have difficulty mustering the energy to regularly shop for groceries and prepare meals.
?It?s a whole cascade of effects that can happen,? Ms. Parlor said. ?We still see it in a large extent because the medical cause of this is not understood and there?s not a test for it.?
