1998 Clinical and Scientific Meeting

Byron Hyde M.D.

The Nightingale Research Foundation

Clinical Features of M.E./CFS

Christine Hunter has asked me to speak on the clinical features of M.E./CFS as reviewed in Nightingale's textbook The Clinical and Scientific Basis Of Myalgic Encephalomyelitis. In this publication we discuss the clinical features of individuals who fell ill acutely, either individually or in clusters or in epidemics and who manifested a troubling, sometimes profound and usually chronic alteration of certain of their normal Central Nervous System resiliency and control mechanisms. This phenomenon has been referred to by several names most commonly Myalgic Encephalomyelitis and Chronic Fatigue Syndrome.

The information in these clinical chapters were the result of the investigation, at Nightingale, of in excess of 1000 patients who had fallen ill, primarily during the 1984-88 pandemic in the United States and Canada; the new wave of disease first heralded by Drs. Paul Cheney and Daniel Peterson in Lake Tahoe. This clinical information was supplemented by work of Dr. John Richardson of the Newcastle Research Group in the U.K. Dr. Richardson had for over 40 years followed thousands of M.E. patients, and it was he who has pointed out repeatedly that M.E. was not merely an acquired injury to the CNS but that the end organs, principally the heart, endocrine glands and gastrointestinal system were often and sometimes significantly affected. These chapters on clinical findings were further supplemented by the wealth of clinical information documented in more than 50 epidemics of similar disease since 1934. I strongly advise both patient and physicians to read these chapters for a better understanding of M.E./CFS.

In this meeting in New South Wales I shall depart from the text and look at the findings of a specific cluster epidemic that occurred during the Christmas period of 1993 in Ottawa and Montreal drawing attention first to 3 individuals that were identified as a cluster by the presence of an identical novel enterovirus common to each patient. I will discuss the features and physical findings in 3 individuals who fell ill within the same 10-day period, in the same manner and with the same genetically identical virus but who were separated by geography by 20 and 40 kilometres. Within this cluster, identified by time, manner of onset, and immediate proximity of homes, I will discuss the onset of a spectrum of illnesses that include classical M.E./CFS, Fibromyalgia Syndrome in a mother and identical twin daughter. The identical twin daughters are particularly interesting in that they both fell ill at the age of 16 and at that time were identical in appearance and size and weight. One of the twins recovered within a year and went on to grow and now weighs 124 lbs. The other twin has recovered to some degree but still remains ill and is now shorter in stature and weighs approximately 98 lbs. The daughter who remains to some degree ill demonstrates lower than normal human growth hormone levels and antibodies to her mitochondria. The mother who was the most disabled demonstrates brain atrophy by MRI. Also affected immediately across the street was another 16 year old. The next door neighbour who fell ill with the same or similar infectious illness was within a short period after diagnosed as chronic lymphatic leukemia. Three doors up the street another patient developed Crohns Disease (terminal ileitis).

If time permits I will then discuss the clinical aspects of the most recent 100-CFS patients. These patients had all been seen from 5-20 physicians. Depending upon the physician they had been diagnosed as CFS, FS, or patients with psychiatric disease. Of the 100 patients, no more than 4 had clearly recognizable psychiatric illness and the remaining group consisted of those who were positive for the unique enterovirus noted. However a significant majority of these patients had a wide range of either well-known or little known medical illnesses. Time permitting, some of these findings will be discussed and the implications that these have on the validity of the American CDC, CFS guidelines as a technique to access a uniform or consistent disease pattern.

I will call for the recognition of M.E. as a more distinct clinical entity than CFS. I will also note that CDC as described by the CDC and the UK and Australian groups is actually a more diverse disease spectrum associated by a common group of symptoms but often with vastly different etiology, physical findings and clinical outcome. I will further call for a repudiation of the policy statement limiting the degree of investigation and note the necessity of a more in depth investigation of all CFS patients since these patients usually represent severe underlying disease processes or injuries to the CNS or CNS and end organ sites.

I will conclude by pointing out the lack of rational in attempting to seek a common treatment for patients described as CDC which appears to be a large spectrum of diverse and often serious disease entities.

 

Alison Hunter Memorial Foundation
PO Box 6132 North Sydney 2059 Australia
Phone/Fax +61 2 9958 6285

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