CFS is an often debilitating disorder that is characterized by a number of non-specific symptoms common to other illnesses and difficult to confirm.
The main indicator is extreme fatigue that is not improved by bed rest. But so far, the cause is unknown and no specific diagnostic tests are available. Like Thompson, those who experience the condition face the additional stigma of trying to find proof that they are indeed suffering a physical illness and it is not all in their head.
So, it was welcome news to Thompson when two years ago, Edmonton researchers offered some of the first physical proof that her illness existed.
Hannah Pazderka-Robinson, nearing the completion of her PhD in neuroscience at the University of Alberta, wanted to learn if a biological basis could be found for those suffering from CFS. She teamed up with renowned psychiatrist Dr. Pierre Flor-Henry to investigate whether "psychophysiological methods" could separate CFS from depression, one of the major symptoms CFS patients exhibit.
The non-invasive testing uses detailed assessment equipment at Alberta Hospital Edmonton's Clinical and Diagnostic Research Centre (CDRC), where director Flor-Henry has looked for and found biological evidence to support other traditionally described psychiatric disorders such as schizophrenia or manic depression. Pazderka-Robinson's study was the first to test CFS.
The research team compared three groups: patients with CFS, those with depression, and a control group. In a dimly lit chamber, research subjects have electrical sensors taped to their third and fourth fingers and temperature sensors attached near the fifth finger of both hands. The chamber then emits a repetitive strain of either a flash of light on a screen ahead or an audio tone through headphones, and scientists observe how the body learns to expect and cope with one stimulus and how it reacts when a new or unusual one occurs.
The data showed that CFS sufferers could indeed be distinguished from those battling depression and from the "normal" control group. Simply put, there is a biological basis to CFS. The research results were published in the prestigious International Journal of Psychophysiology.
After media outlets carried news of the findings, Pazderka-Robinson was swamped by e-mails and phone calls from CFS patients around the globe. "I was really overwhelmed by the response," she says. "A lot were writing to say 'Thank goodness, because my doctors never believed me.'"
CFS patients are often misdiagnosed as just being "depressed" and sent home with medication that doesn't properly address the underlying condition. Then the cycle continues. The medication doesn't work, so the patient returns to the doctor to hear that there must not be anything wrong if the drugs aren't treating the problem. The patient then returns home often humiliated and no further ahead. "With a chronic illness that is so misunderstood and difficult to treat, secondary depression is a normal consequence," says Dr. Flor-Henry, CDRC director. "But CFS is certainly not a psychiatric illness. We have these physical parameters now to show that whatever CFS is, it's not depression."
If CFS sounds much like fibromyalgia, there is good reason, says Dr. Flor-Henry. He believes the two disorders are "opposing faces of the same coin."
The difference is the dominant symptom in CFS is fatigue and, in fibromyalgia, it's pain. "With chronic fatigue, a common trigger is a benign infection like a cold whereas fibromyalgia is often triggered by whiplash in a vehicular accident."
Few centres, if any in Canada, offer the spectrum of testing that the CDRC does, says biostatistician Dr. John Lind. "We can assess patients from the periphery right through to higher levels of thought processing," he says. The centre can examine people by applying skin sensors that record physiological activity or by mapping detailed brain waves that can help in deciphering how a patient reaches certain conclusions.
Part of the hospital's mandate includes assessment, treatment, diagnosis and, of course, research. Using innovative tools, scientists continue to conduct further inquiries into a range of mental illnesses and disorders like CFS.
Sandy Thompson will be watching ongoing research closely, especially if it can prevent others from going through an experience like hers. Thompson hit her low point when she needed help going to the bathroom and was in constant, excruciating pain. It felt like being in a coma, she says. By the time she would arrive at the doctor's office, she was so exhausted she couldn't properly explain her condition.
"The bad thing about this illness is that you don't have co-operation or understanding," says Thompson, who is president of Edmonton's ME Society (CFS is also referred to as Myalgic Encephalomyelitis). "It can be extremely isolating. Your family, friends and co-workers knew you when you were vibrant and healthy and they think you are lazy and don't want to work. You can't help how you are feeling. It's hard. It attacks your self-esteem and you go through a real grieving period."
Things are getting better for Thompson. She now runs her own business as a professional organizer and can work around her illness. And she has seen an improvement in how the medical field is starting to recognize the legitimacy of CFS. But even with these advances, Thompson is grateful that the innovative work conducted at the Alberta Hospital Edmonton showed the rest of the world what she knew all along.
- Phoebe Dey
Your Health Magazine - January/February 2006
Disclaimer
Reviewed by Alberta clinical experts. Brought to you by HealthLink Alberta. Copyright.
This material is designed for information purposes only. It should not be used in place of medical advice, instruction and/or treatment. For more health advice call Capital Health Link at 780-408-LINK (5465) 24 hours a day, seven days a week. In Alberta, call Toll-free: 1-866-408-LINK (5465)
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