18 June 2008
The Age - Metro Life & Times - June 17, 2008
So Very Tired
Some people think they're faking, they feel as though they might be dying. This is the painful world of chronic fatigue. Annie Lawson reports.
When word spread that Dr Don Lewis treated patients with chronic fatigue
syndrome his general practice in Donvale was swamped with sufferers. Over
the next few years Dr Lewis' workload doubled, until he shut his GP clinic
and opened a clinic specialising in the syndrome, a disease that continues
to baffle the medical community.
Demand for Dr Lewis' services has grown steadily since he opened the clinic
in 2001 - he has seen 1500 patients and the waiting list is six months long.
Many sufferers see Dr Lewis as a last chance to reclaim their lives,
shattered by an illness that strikes indiscriminately and can last for
years.
About 140,000 Australians have CFS (also known as Myalgic
Encephalomyelitis) , about 35,000 in Victoria. While awareness is growin, it
still carries the unfortunate stigma that its victims are malingerers. In
the '80s it was flippantly labelled "yuppie flu", as it seemed to target
young professionals. It is now known to affect all ages and personality
types.
Trouble is, CFS is difficult to diagnose because the symptoms vary greatly
among individuals (except for the overwhelming fatigue). Consequently, many
sufferers find themselves drifting from one specialist to another in search
of answers. Some develop anxiety and depression and end up being treated for
a psychiatric disorder rather than a physical illness.
Symptoms include physical and mental exhaustion, concentration impairment,
muscle pain and headache, and sleep disturbance. Many experience food
intolerances and others cannot stand for long periods.
"I have strapping 18-year-old youths who used to play football that can't
stand for six or eight minths," Dr Lewis says. "The fact that the patient
can hardly sit up and put two words together when previously they were fit
and well - they are clearly disabled and wouldn't choose this pathway."
Although CFS does not discriminate by age or sex, anecdotal evidence
suggests more women than men develop it. Dr Lewis believes there may be a
genetic predisposition. For the first time, Dr Lewis is presenting a clearer
picture of who suffers from CFS, based on statistics from his clinic.
An analysis of the 55 new patients he treated last year revealed 70% were
female. Half weren't working and while one in four fully cared for
themselves, the rest needed help with either meals, housework, shopping or
personal care. One in 10 were bed-bound and needed help going to the toilet
and bathing. The majority of patients were aged 11 to 20 when they became
ill, but many fell outside this category.
Infections, mostly viral such as glandular fever, triggered the onset of CFS
in 80% of patients. Physical or mental overexertion also brought on the
symptoms. "That group of people were ill for a total of 274 years before
they saw me," Dr Lewis says.
Professor Andrew Lloyd, infectious diseases expert at the University of NSW,
has investigated CFS for the past 20 years. His research team studies the
long-term health of 800 people in Dubbo, NSW, with either Ross River virus,
Q fever bacterial infection or Epstein-Barr virus, which causes glandular
fever - all common triggers for CFS. About 10% of people who had these
viruses went on to develop CFS.
"Traditional thought was that patients with CFS might be psychologically
vulnerable, but we've shown mental health prior to the infection doesn't
predict," Professor Lloyd says.
This led to further studies to discover why some people's brains remained
inflamed after a virus disappeared, affecting the area that controls
perception of pain and fatigue.
"Our current hypothesis is that a neurochemical switch go turned on in the
acute illness inside the brain and it was left on," Professor Lloyd says.
Dr Lewis laments that Australia's "inadequate diagnostic guidelines" make it
difficult for patients to make claims from Medicare and private health
funds. He says Canada's clinical guidelines, considered to be a
comprehensive diagnostic tool, should be embraced by Australia to eradicate
lingering doubts about CFS's legitimacy.
Dr Lewis says the therapies that have been most effective for CFS sufferers
include exercising within certain limits, maintaining a low glycaemic index
diet (as CFS overstimulates insulin levels), and repleneshing depleted
potassium.
"If they learn to keep within their bounds, gradually their bounds will
extend," says Dr Lewis.
Mary Hoch, director of the CFS Recovery Program in Melbourne, says patients
continue to face scepticism. Her son, Matthey, was struck down at 12 and was
so fragile he could not get out of bed for six years.
"Its like the last stages of cancer, only you don't die," says Hoch. "This
is a physical illness and it is very real."
Her son recovered in 2005 after attending a residential program at the
Austin Hospital for adolescent CFS sufferers. Later that year, Hoch
established the recovery program for adults, believing the 20-+ age group
had less support than adolescents.
Run out of Beau Monde International Hotel in Doncaster, the program includes
gentle physical exercise, meditation, counselling sessions with
psychologists, and activities to improve cognitive function. So far, all 70
participants have been successfully rehabilitated.
"On a scale of 1 to 100, with good health being 100, people come in at five
to 30 and we get everyone out between 60 to 80," says Hoch, who is a
registered nurse.
"Scientifically, we can't explain why it works, but it really works. We've
worked with people that have had CFS for nine months and for 30 years and it
doesn't matter how long they have had it, after the four week program, they
go back to work and study. We have given them back their lives."
Links
cfsdiscovery. com.au
cfsr.com.au
Send your letters to: letters@theage. com.au
The Age - Metro Life & Times - June 17, 2008
One woman's story
By Katherine Kizilos
Before Marg Purcell felt tired all the time she was a sprinter who, to her
great delight, didn't slow down when she got older. In 1995, when she was
36, she ran for Australia in a veterans' world championship race in New York
and won.
Competition thrilled her, she loved feeling powerful and strong. She told
herself, "The harder I work, the luckier I get" and "to be a champion you
have to train like a champion". When she lost her health, she lost more than
her sense of who she was - she lost her way. When you have chronic fatigue
syndrome, pushing yourself to the limit exhausts you, robs you of precious
energy.
Purcell has lived with chronic fatigue (CFS) for the past nine years. She
spent nine months in hospital and has been so sick that she has not been
able to tell a nurse how she likes to drink her tea. She says it was only
after seven years of living with the illness, after a relapse sent her into
hospital again, that she learned to accept her condition; she doesn't know
whether her inability to accept her unwellness before then was due to
stubbornness or slowness. She kept expecting that she would feel better in
six month's time and eventually realised that this may not be so.
Purcell still hopes to improve, but now she is learning to live her life day
by day: to deepen her experience of the moment. "I realised that I needed to
learn to live with it better," she says.
Purcell has written a book giving an account of her life before the illness,
how she became unwell and what treatments she has tried. It is also a record
of the unexpected places her illness has taken her. She has derived great
comfort from self-help author Wayne Dyer's remark that, "we are eternal
beings having a human experience".
"A friend of mine who had CFS, she had a relapse and was even sicker the
second time, killed herself in the end. I can very much understand why she
did it ..."
Although Purcell says she has made her peace with her condition now, there
was a time when she was also preoccupied with thoughts of suicide.
So far, the journey has been a tough one. Purcell believes the condition was
triggered by a virus and may be caused by an autoimmune dysfunction. It took
18 months for the diagnosis of chronic fatigue syndrome to be made. The
diagnosis came about because her psychiatrist, who was assigned to Purcell
when she was in hospital, paid attention when she told him she did not
believe she was depressed. She recalls that when a physician told her she
had chronic fatigue "it was a huge relief to know what it was I was dealing
with".
The diagnosis changed the way Purcell's condition was managed. It was
finally accepted that intense exercise was not helping her, although gentle
exercise has a place.
"Even now when I am relatively well, I still can't manage the house and the
grocery shopping. I have to plan when I am going to wash my hair because
having a shower exhausts me this far down the track," she says.
Her hope is that there might be "one little thing in the book" that might
stop a fellow sufferer from ending their lives. "Its such a tragic thing for
someone to die as a result of this illness."
'Chronic Fatigue Syndrome, A Journey I'm Still On', by Marg Purcell, is
published by National Biographic Australia.