Chronic Fatigue Syndrome lumbers towards credibility

The 'yuppie flu' tries for a makeover; it's hard to get out of bed

By Abe Konigsberg

How to tell if your patient's legit or layabout There has recently been some very practical fine-tuning in the exclusionary testing physicians can use to rule out CFS. Here are some tests you can pull off the net to see who's faking and who's fatigued: The Composite International Diagnostic Instrument The World Health Organization recommends this computerized psychiatric interview that's well suited for Gps. Available in English, French and Spanish at www.who.int/msa/cidi. Cognitive Function Index (CFI) The New Jersey Chronic Fatigue Syndrome & Fibromyalgia Center recently came up with this user-friendly test for CFS cases Available at www.umdnj.edu/cfsweb /CFS/CFI.html.

It was the middle of exam season and Henry Cormier, a 26 year old history student from Montreal, was feeling unusually tired. Normally a night owl, he found he just couldn't stay up late anymore and he started passing out mid-sentence at eleven on the dot like a narcoleptic Cinderella -- even when friends came by for a beer.

Studying became impossible: he'd fall asleep at his cubicle in the library and one night on the way home from a class he rode the metro for three hours after having fallen into a deep slumber. His grades were falling, his social life was a mess; finally, he decided to go see his doctor. It wasn't just exhaustion that caused his jaw to drop when his doctor told him what he had -- he was diagnosed with Chronic Fatigue Syndrome (CFS).

"When I was told that I had chronic fatigue I remember thinking that my doctor was suddenly some kind of crackpot," says Henry. "It sounded like New Age hippie mumbo jumbo to me." The doctor took a blood test and ruled out mononucleosis, which was what he suspected he had. Then he went for a second opinion and the other doctor came to the same conclusion. After that he had to accept that he really had it.

In the last 15 years CFS and its sufferers have made great strides in the long road to acceptance, though a quick search under "Chronic Fatigue Syndrome" on Google will still yield a mixed bag of results. There are sites linking CFS to alien abduction, and a towering heap of charlatans and naturopaths trumpeting 'cures' for the mysterious syndrome. The medical community has yet to rally behind any of the many and varied theories about CFS's origin. Some think a persistent virus similar to mononucleosis is to blame (this was Henry's doctor's diagnosis), while others point to a strand of herpes. Poor brain circulation, ineffective killer cells, and lingering vaccine side-effects have also been suggested. But we're no closer to any certainty.

One of the big problems is the dearth of decent research on the subject. Recent studies haven't put a dent in the controversy over CFS's cause and nature. Arguably part of the problem is the focus of the research. In December the European Journal of Clinical Investigation blasted two recent multidisciplinary CFS research groups for failing to enlist any endocrinologists, despite the syndrome's many similarities with Addison's disease. There is also a strong link with other psychiatric disorders, but this area has not been rigorously explored. A four-year study on medication use amongst CFS sufferers in Wichita, Kansas was recently completed by the Centers for Disease Control and Prevention.

The study showed that those with CFS are more likely than the general population to use pain relievers, vitamins supplements, antidepressants, gastrointestinal agents, hormones, central nervous system drugs, and benzodiazepines. Surprisingly, this was the first study of its kind on CFS. The researchers also noted medication use (either self-administered or prescribed) didn't change sufferers' fatigue status.

There's still a very vocal group of sceptics out there, who still dispute the existence of the so-called 'yuppie flu.' One is Dr Robert Burton, San Diego neurologist, who argues that CFS is really depression. When he was in med school "the euphemism was 'masked depression,' which meant that the doctor recognized that the patient was depressed, but the patient didn't," he says. But he feels that now many doctors are afraid to tell people they're depressed.

On the other extreme of the debate are the advocacy groups like the US-based Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) association. They've managed to politically energize their chronically fatigued members for political action.

The group holds an annual "Lobby Day" where sufferers travel to the United States Congress to fight for recognition and research funding. International CFIDS/CFS Awareness Day (May 12) is another important date on the activists' calendar. For this event the group urges its members to send letters to politicians, the media and healthcare professionals. The information packet supplies members who find writing too energy consuming with a form letter to use "as is." Scrapping the name 'Chronic Fatigue Syndrome' is one of the CFIDS Association's pet projects. Their website describes it as "imprecise and stigmatizing."

Dr George Venkatarangam, an assessment doctor for the Workplace Health, Safety and Compensation Commission of New Brunswick and an anaesthetist, has seen scepticism decline amongst his peers since the first case definition for CFS was published in the Annals of Internal Medicine in 1988. But he feels the recent push by the CFIDS Association to replace "Chronic Fatigue Syndrome" with the wordier, weightier "chronic fatigue and immune dysfunction syndrome" is premature. Dr Venkatarangam also fears that with today's understanding of CFS, it's very difficult to tell if someone is faking the sickness. "I had two patients who were injured at work and complained of various areas of pain and tiredness with no objective findings," he says. "They felt they had CFS brought on by their work and wanted compensation. This was denied." Some of these people are, in his professional opinion, just plain lazy.

"That's what I used to think," admits Henry, our CFS sufferer. "I heard about all that yuppie flu stuff on tv. And even after I got it, I still thought it was kind of goofy. But I still say the worst part wasn't being tired, but the constant razzing I got from everyone. People's first reaction was always to laugh out loud when I told them what was wrong with me. At first that's ok, but after a while it really gets on your nerves."