February 18, 1993 by Paul R. Cheney M.D.,Ph.D Charlotte, NC

My name is Dr. Paul Cheney. I am a general internist by training.

I was invited by the CFIDS Association, a patient group of some 30,000 members, to present the perspective of a clinician in the trenches treating chronic fatigue syndrome. It has now been over eight years since I first became conscious of this disorder as a distinct clinical entity. I watched in awe as over 200 cases appeared over a span of six months in a small community on the north shore of Lake Tahoe where I practiced in 1984. Since then I have evaluated over 2500 cases of chronic fatigue of which over 2000 cases meet the CDC case definition.

I currently direct the Cheney Clinic in Charlotte, NC, (which, with a staff of fifteen, is devoted entirely to the diagnosis and management of CFS). We have carefully evaluated in the three years of our existence over 1200 cases from 45 states and 6 foreign countries or territories. 78% meet the CDC case definition. We have seen the worst and the best of the range of scenarios that can befall a patient with this disorder. At best, it is a prolonged post-viral syndrome with recovery or improvement within one to five years. At worst it is a nightmare of increasing disability with both physical and neurocognitive components.

The worst cases have both an MS-like and an AIDS-like clinical appearance. While CFS is not generally fatal, we have lost five patients in the last six months. Two by suicide and three by intercurrent infections. All were in a progressive, debilitated state. The most difficult thing to treat is the severe pain. The most frustrating is the fatigue. The most alarming is the neurologic and neurocognitive elements of this disease. Half have abnormal MRI scans, 80% have abnormal SPECT scans, 95% have abnormal cognitive evoked EEG brain maps. Most have abnormal neurologic examinations. (The most severe cases have neurologic findings which are striking but at the extreme of a continuum of abnormalities which are subtle in most cases.)

We have 155 cases with random CD4 counts below 500, 62 cases below 400, 21 below 300 and 3 below 200. An estimated two thirds of these cases will persist below 500 on repeated determinations. Only a few will meet the crurent case definition of ICL. None have shown progressive CD4 depletion as seen in AIDS. (Many with low CD4 levels are clinically quiescent and quite stable.) However, we have had four cases of AIDS defining opportunistic infections including MAI and pneumoncystis pneumonia and two cases of spontaneous esophageal candidiasis. (One of these patients has had repeated bouts of opportunistic infections but only one has CD4 depletion.) 40% have impaired cutaneous skin test responses to multiple antigens. Most have evidence of T-cell activation. 80% have an up-regulated 2-5 A anti-viral pathway on a single determination.

From an economic standpoint, this disease is a disaster. 80% of the cases evaluated at my clinic are unable to work or attend school. The average length of illness at the time of presentation is 3.8 years. 90% have become ill since 1980. The yearly case production, if plotted, is exponential. Most are already on or will shortly be on some sort of disability plan, public or private. In a recent survey of 20 consecutive patients at our clinic, the average dollar figure spent on medical care before coming to our clinic was $15,000 with a range of from $2,500 to $50,000. Most patients had seen more than ten physicians. (Very few were happy with their care or treatment at the hands of ordinary physicians, but especially medical specialists. The worst care is rendered by HMO's and national diagnostic clinics. The best care is rendered by caring family physicians.)

The most common reasons given to come to our clinic are 1)To obtain a definite diagnosis 2)To seek treatment options and 3)To document disability for subsequent social security disablity applications. We are frequently depositioned for disablity and other types of litigation. (Many cases involve divorce as we witness the disintegration of the family unit. WE have seen litigation against schools to force homebound teaching of impaired children with CFS.) The medical legal aspects of our practice steadily grow as this disease eats at the fabric of our communities.

We admit regularly to the hospital. The most common admitting diagnoses are acute and chronic encephalopathy, uncontrolled head pain and debilitating fatigue with inability to care for self. The longest hospitalization is 5 months to date. That patient has encephalopathy, seizures and apraxia and is currently awaiting nursing home placement at the age of 37. Medicare/medicaid has to date paid $150,000 to the hospital for her care which has exceeded $250,000 since August 1992. Another patient, age 28 and also on medicare, spent 8 weeks at Emory University Rehabilitation Hospital. During her stay at Emory, she steadily worsened under standard rehabilitation protocols and was eventually transferred to me for an additional 1 month hospitalization. (She has been confined to a wheelchair for 18 months with severe lower extremity extrapyramidal motor neurnon disease.) Both of these cases are summarized in two case reports for your review.

In summary, CFS is an emerging, poorly understood disorder with a distinctive clinical presentation. I am not at all sure that it is as heterogeneous as some would lead you to believe. (I am also not al all sure that much of what I and others have been witnessing since 1980 is necessarily and old disorder. Post-viral syndromes are certainly old and certainly related but most CFS cases are much more distinctive than that. The boundaries of this disorder are certainly vague but htat is true of many otherwise distinctive clinical entities.) This disorder is a socio-economic as well as medical catastrophe that will not end. I believe that government and university clinicians have spent too little time with or thought too narrowly about these patients. This disease is too complex to rely wholly on standard medical orthodoxy to explain it. When in doubt listen to a thousand patients with an open mind. Failing that, then listen to those who have spent countless hours with a thousand patients. Most of us have some wisdom to impart and most of that came from patients.

Thank you for listening,