Paper presented by Dr Byron Marshall Hyde M.D. Nightingale Research Foundation
New South Wales, February 1998
Abstract: At the 1998 M.E./CFS conference in Australia, both Myalgic Encephalomyelitis and Chronic Fatigue Syndrome were used to describe a chronic illness. This paper is a discussion on the similarities and differences in these two terms that may lead to scientific difficulties. The author suggests that the definitional criteria and epidemic history of Myalgic Encephalomyelitis (M.E.) and the inclusion criteria are significantly different from the CDC definitions and history. The three typical phases of M.E. are discussed. A brief review of some of the known deaths in phase 2 of M.E. are also mentioned.
Myalgic Encephalomyelitis (M.E.) This is a term used to describe an epidemic and sporadic disease process that is associated with a chronic debilitating illness of children and adults. Variants of this term M.E. were first used following a series of repeating epidemics starting in May 1955 in the Royal Free Hospital in London England. New outbreaks of this illness continued until 1958 in various London area hospitals. M.E. and these epidemics are well described by A. Melvin Ramsay in his book Myalgic Encephalomyelitis and Post-Viral Fatigue States.
The characteristic M.E. illness is a disease process that can, in its complete form, be separated into three distinct phases.
Phase #1 This prodromal phase is associated with a usually short onset or triggering illness. This onset illness usually takes the form of either, or any combination, of the following, (a) an upper respiratory illness, (b) a gastrointestinal upset, (c) vertigo and (d) a moderate to severe meningitic type headache. These are only the most common onset illnesses or symptoms of which there are several. The onset illness is associated with either a low grade or subnormal temperature, headaches, sometimes persisting and accentuated by movement with intermittent attacks of vertigo or dizziness. In the Royal Free Hospital epidemics, several hundred staff members of the various hospitals were involved and almost no patients. Many of the hospital staff who fell ill had a previous illness, immediately recent immunization or marked work exhaustion that preceded the illness. Evidence of a previous immune insult is found regularly in both epidemic and sporadic cases.
Phase #2: Principal Illness: The acute phase of the principal illness then appeared in these patients. They complained of limb, back and neck pain, paraesthesiae and blurring vision. Muscle cramps, spasms and twitching and deep muscle tenderness were common but the dominant feature was muscle and brain fatigability and irritability even after a minimal degree of physical or intellectual exertion. Evidence of autonomic nervous system involvement was present in many cases. Another major component was cerebral involvement, which usually took the form of impairment of memory, concentration and emotional response. Seizure-like phenomena are not unusual. Many of these Royal Free patients had abnormal EEGs during the phase #2 period. The illness was considered consistent with an encephalomyelitis. The patients often complain of (a) abnormal cardiac rhythm, or (b) unusual cardiac movement. However, when examined by routine ECG, pathological features are rarely observed. In some cases the cardiac symptoms actually represent pectoral or other muscle spasm. In others, orthostatic cardiac irregularities that are not necessarily observed in supine ECG examination may be the cause. Diaphragmatic or counter-peristaltic abnormalities may also cause these sometimes pseudo-cardiac symptoms. During this phase the patient often appears quite ill. This phase can persist for weeks, months, or, in severe cases, one or two years. In a rare small percentage of individuals, phase #2 can persist for years or even permanently. This is unusual. In general, the severity of the complaints, particularly the abnormal muscle movements, seizure phenomena and severe headaches tend to taper off. Autonomic dysfunction, when it is of significant importance, rarely improves. As noted, infrequently phase #2 can become chronic. Very infrequent deaths have been known to occur in this phase and usually are represented by two different pathophysiologies. . Dr. John Richardson of Newcastle upon Tyne, U.K. has noted deaths in professional athletes who return to active professional sports, "to work off the flu". Cause of death has been attributed to orthostatic cardiac irregularity. It is also during this phase that CNS deaths occurred in the Cumberland Epidemic, in the Akureyri epidemic, and in one of the Mediterranean epidemics.
Phase #3: The chronic phase of the principal illness then followed phase #2. In 1988, it was this often-amorphous phase #3 that the CDC labeled Chronic Fatigue Syndrome (CFS). Where M.E. and CFS overlap, they undoubtedly represent the same illness, however, due to the considerable definitional and conceptional differences, CFS and M.E. should not be considered to be the same illness.
In phase #3, the M.E. patient is always prone to unusual and persisting muscle and CNS fatigability after relatively normal physical or intellectual exertion. The patients are not chronically fatigued. When unstressed physically, intellectually or emotionally, the M.E. patient appears totally normal and often has no difficulty doing very short-term tasks. The problem is above all, one of endurance and once exhausted, the increasingly lengthy time to recover to a reasonable degree of activity. The M.E. patient can suffer any or all of the following cognitive and emotional dysfunction: marked irritability, anxiety, panic, depression but most of all memory dysfunction exacerbated by any physical, sensory, environmental, emotional, social or economic stressors. Both from the patient and physicians point of view there were major difficulties in that there was a considerable lack of obvious or substantial physical signs to correlate either the severity of the symptoms or the often marked prostration of the individuals concerned. Depending upon the degree of initial illness, location or character of injury or vulnerability of the individual, this Phase #3 may persist in the fortunate cases for a period of months or up to a year, sometimes in a constant illness or as a recurrent illness triggered by any physical or intellectual activity. The unfortunate individuals, of which there are a great percentage, never recover. It is very hard for many physicians to understand, why an individual, with few or no external stigmata of disease, and no obvious psychiatric illness can be so totally disabled. The M.E. condition could be compared to land full of new Porches or Masserattis with faulty batteries in a country with no battery testing machinery and no spare batteries. They look good, they should go, but they don't. In this phase, despite their severe disability to any stressors, the patient often appears relatively normal to the inexperienced physician. It is in this phase that most accidental and suicidal deaths occur.
Dr. A. Melvin Ramsay followed many of those who fell chronically ill during this 1955-1958 epidemic period for up to 34 years, until he died in 1989. This type of epidemic continuity proved to be quite characteristic of the M.E. epidemics that occurred in Akureyri in 1947-1949, in the Royal Free epidemics and in the North American epidemic period that extended from 1984 to 1988 (In 1983 in New Zealand where this pan-epidemic may have originated. All of these epidemics occurred in the late summer and autumn, decreasing in winter, with a new small peak of new female cases at Christmas in the Northern Hemisphere. The numbers of new cases would then rapidly fall off as the winter months progressed, only to reappear in the late summer again.