Paper Presented by Byron
Marshall Hyde M.D. – Nightingale Research Foundation
At the 1998 M.E./CFS conference in
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
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
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
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
Monthly pattern of onset of new M.E. /CFS illness
This M.E. type of epidemic that was first observed and
documented in detail in the summer of 1934, Los Angeles County General Hospital
Epidemic by Dr. Alexander (
These
epidemics have been associated with certain particular characteristics. Onset can be at any season but most
frequently occurs in summer or autumn.
There appears to be a high prevalence of epidemics or clusters in
schools, hospitals and institutions involving hospital staff. Teachers, residential students or students
engaged in team sports or orchestras traveling in groups appear more
affected. The illness is less common in
patients hospitalized for other causes and non-residential students. In patients seen at Nightingale, staff and
teachers at institutional schools, particularly for the physically or mentally
disabled appear to be greatly at risk.
The usual incubation period of the triggering illness is 4-6 days. The second and third phases of the illness
are usually always different in nature from the onset illness and usually
become apparent within 1-4 weeks after the onset of the presumed infectious
triggering illness. Much interest has
been associated with herpes virus in the United States of America, particularly
EBV, (incubation period approximately 40 days) and
HHV6 (HHV6 is simply the common and innocuous roseola
virus of children with an incubation period 10-12 days). Because of their quite different incubation
periods, it is highly unlikely that either of these two viruses are significant
contributors, if at all, to M.E. illness. (Over the
years, the repeated and reputed association of these two herpes viruses with M.E./CFS is perhaps
mythological). The herpes virus
association is more likely (1) correlation phenomena caused by the glut of
herpes virologists in
Probably the
best descriptive definition of M.E. is found in
Ramsay's book mentioned earlieri or in the
Doctoral Thesis of Dr. Andrew Wallace,vii
a Scottish physician who immigrated to
Dr. Wallace
defined the chronic disease in both adults and children. His adult definition
notes:
A
systemic illness with relatively low fever or subnormal temperature.
1. Marked muscle
fatigability.
2. Mental
changes with impairment of memory, mood, sleep disorders, depression.
3. Involvement
of the autonomic nervous system resulting in orthostatic tachycardia, coldness
of the extremities, episodes of sweating and profound pallor, sluggish pupils,
bowel changes with possible hypothalamic injury.
4. Diffuse and
variable involvement of the CNS leading to ataxia, weakness and sensory changes
in a limb, nerve root or peripheral nerve.
5. Muscular
pain, tenderness and myalgia, and
6. Recurrence in
some patients over the several years that he followed them.
Important
Difference That Distinguish M.E. from CFS
This M.E. definition is important in that unlike the CDC
definitions of Chronic Fatigue Syndrome, the Wallace and Ramsay definitions of M.E. observes the importance the initial acute variable
infectious type illness associated with subnormal temperatures. They then note the important secondary and
resulting chronic illness characterized by CNS and the autonomic nervous system
features and intellectual and muscle dysfunctions and their chronic
persistence. Enlarged cervical lymph
nodes and pharyngitis are almost never observed in
the chronic phases of M.E. and yet by definition,
they form part of the characteristic findings in CFS. M.E. is also
distinguished from CFS in that multiple organ
involvement, seizure activity, death, and autonomic nervous system dysfunction
occur in M.E. and by definition, these simply do not
occur in CFS.
Perhaps the most important difference is that chronic fatigue, by
definition occurs in 100% of CFS patients. In M.E. chronic
fatigue is not an essential factor, but rapid CNS and muscular fatigability
with a pathologically slow recovery or loss of stamina is an essential
finding. In M.E.,
the illness, the disease process, its investigation and pathology starts on the
day the patient ceases to be well. In CFS, the
Having stated
this, after having examined more than 2,000 chronic CFS
patients, I have almost never found, (1) enlarged cervical
glands, (2) obvious pharyngitis, or (3) elevated
temperature. Why is this? It is my belief that the initial CDC definition, was created by a group of well meaning
researchers and physicians who, with two or three exceptions, had for all
purposes never routinely seen or examined CFS
patients. Further, it is my opinion,
that this group of well meaning individuals, were initially so complicit in
believing that EBV was the cause of CFS, that they simply incorporated diagnostic features of
infectious mononucleosis (glandular fever) into the CDC, CFS
definition. It is a telling fact, that
with the exception of two, perhaps three, of the original sixteen authors of
the CDC definition, the majority have never again published on CFS or ever routinely seen and examined any CFS patients. It is
also important to note that three of the physicians, who had the longest
experience with M.E./CFS
patients, withdrew from the initial CDC definitional committee.
Conclusions: Definitions are not diseases, they are often
simply the best descriptions that physicians and researchers can offer, with
their always imperfect knowledge, to describe a disease. Good definitions are good because they
correspond closely to the disease state being described. It is thus important that those that attempt
to define any disease or illness to have long term clinical experience with
patients with this illness. There is
simply no place for the bureaucrat in defining illness. All definition of epidemic or infectious
illness must be based upon persistent clinical examination of the afflicted
patient, an understanding and exploration of the environmental factors
producing that illness, and pathophysiological
examination of tissue from those patients.
For similar reasons, I believe that the inclusion of psychiatrists in
the defining of an epidemic and obviously disease of infectious origin, simply muddies the water for any serious understanding
of that disease. The
Byron M. Hyde, M.D.
Nightingale
Research Foundation
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