Monday, March 21, 2011

Sick and tired of being called lazy, chronic fatigue sufferers fight back

Sick and tired of being called lazy, chronic fatigue sufferers fight back
From Monday's Globe and Mail
Published Sunday, Mar. 20, 2011 4:00PM EDT
Last updated Monday, Mar. 21, 2011 12:40PM EDT

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

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

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

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."

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