CFS, ME and Fatigue By Cort Johnson
The Fatigue in
Chronic Fatigue Syndrome: CFS
patients have never been happy about the word ‘fatigue’ in
CFS
and they well recognize the dangers of focusing too much on it; they have
dealt with them for almost 20 years in the US.
Fatigue is certainly present in enormous amounts in most
CFS
patients but it’s the post exertional malaise - the inability to engage in
activity without increased symptoms– that’s the core symptom for many
CFS
patients. While CFS patients and
advocates have come to rue the prominence fatigue has come to play in the
perception of their disease no efforts have been made to completely
dissociate themselves from it.
The Fatigue in
ME: Some ME advocates on the other hand flatly deny fatigue is present
at all in ME. One prominent website flatly states “Myalgic
encephalomyelitis has nothing to do with fatigue” and that “If
you are tired all the time you do not have ME’. This website also claims
that fatigue was not associated with ME until 1988 when ‘CFS’
came along.
An Flawed
Definition? Indeed, fatigue plays only a negative role in the latest
(2007) ME definition put forth by Dr. Hyde. Besides the elucidation of a
‘disease process’ in ME the presence of fatigue in CFS
appears to be a major differentiating factor between the two diseases.
CFS Except
for fatigue the symptoms of ME are startlingly similar to those of
CFS. They include pain, cognitive deficits, sleep
problems, muscle pain, loss of muscle strength after exercise
(post-exertional malaise) and vascular problems (problems standing,
abdominal problems). One could easily be forgiven for assuming, based on
that list, that Dr. Hyde was referring to CFS
not ME.
But he’s clearly not for not long afterwards he bluntly
states ‘ME is not
CFS’ . Why?
Because “fatigue was never a major
diagnostic criteria of ME”. Dr. Hyde reports that ‘fatigue,
loss of stamina, failure to recover quickly occur…in most if not all
progressive terminal disease and in
a very large number of chronic non-progressive or slowly progressive
diseases’. “Fatigue and loss of
stamina…cannot be seriously measured…and do not assist us with the
diagnosis of ME or
CFS
or for that matter any disease process”
According to the ME definition the ME patient is in
pain, has cognitive problems, often has problems standing but does not
suffer from substantial fatigue or if they do, it is of little consequence
to the physician or researcher. Loss of muscle strength after exercise
probably refers to weakness not fatigue. Dr Chaudhury and Behan carefully
distinguished between weakness and the fatigue when they described the
features of ‘central fatigue’ a problem they they believe is a central
feature of CFS. If ME patients are weak
rather than fatigued they can be thankful; weakness itself is not
uncomfortable, fatigue on the other has a high misery index.
A Historical
Perspective: Are ME patients weak or fatigued or both? An examination of
the early (and virtually only) studies on ME indicates that far from being a
throw away symptom fatigue is often mentioned by the early ME researchers.
In 1959 Dr. Acheson, in a large overview of these studies, summarized what
was known about ME.
Dr Acheson noted, as Dr. Hyde does, that the severe
headaches, muscle pains (and paralysis!?) are often seen early in the
disease. In fact fatigue is not always mentioned although several analogues
to it (lassisitude, lethary) often are.
Dr. Acheson notes, as does Dr. Hyde that the severe headaches and
muscle pain in ME tend to diminish over time. What Dr. Hyde does not report,
however, is that follow up studies invariably mention that severe fatigue is
a debilitating part of the disorder.
In the Coventry
outbreak the authors reported that ‘extreme
fatigue… made the
rehabilitation period extremely tedious and long’. Dr. Acheson reported
that the ‘majority of patients
afflicted in the outbreaks…have returned to work after a period of
convalescence prolonged by fatigue, aches and pains, depression and
lack of concentration”. Seven to ten months after the Akureyri outbreak
‘nervousness, fatigue and
persistent muscle pains were common. Six
years later those still afflicted complained of ‘nervousness
and tiredness’ and less commonly muscle pain and loss of memory.
Five months after the Punta Gorda outbreak the still
ill patients most commonly complained of ‘nervous
tensions, fatigue and depression.’ Two years afterwards Deischer
reported the most common problems were ‘tiring
easily’ followed by pain and stiffness. In Dr. Ramsey’s and
Dorsett’s 1977 letter to the British Medical Journal on ME they stated that
the most characteristic presentation
is profound fatigue…increasing in severity with exercise.
(Interestingly these five doctors do not mention headache). A letter to
the BMJ on epidemic myalgic encephalomyelitis on June 3rd ,1978 states ‘One
characteristic feature of the disease is exhaustion, any effort
producing generalized fatigue”. In Dr. Acheson’s summary he
states that ‘in some instances a
characteristic syndrome of chronic ill health has developed with
cyclical redrudescences of pain, fatigue, weakness and depression…”
In the more modern era the first symptom that Dr. Ryll,
a U.S.
physician who has conducted the longest continual study of ME patients on
record (1975-1994), listed was severe exhaustion. He noted that the
‘exhaustion
that occurs in this disease is profound and unusual”. (Although
championed by ME advocates for many years Dr. Ryll believe ME,
CFS, fibromyalgia and gulf war syndrome are essentially
the same disorder). ME advocates often claim the
Incline Village
outbreak of 1983-85 to be ME yet Drs. Cheney, Komaroff, Peterson, Buchwald,
etc. required that patients experience
‘chronic debilitating fatigue’
for at least 3 months in
order to participate in the study. Dr. Ramsey in 1986 twice referred to the
‘dominant clinical feature of
profound fatigue’ in ME. The Ramsey and Dorsett ME criteria(1990) stated
that the first cardinal feature of ME is ‘Generalized
or localized muscle fatigue after minimal exertion with prolonged recovery
time’.
Thus long before some ME advocates sought to distance
themselves from the fatigue in ‘CFS’ ME
physicians and researchers were consistently reporting that fatigue was a
significant problem at least in the chronic stage of the disease.
This, of
course, is the stage the great proportion of CFS/ME
patients are in.
An Unusual and
Medically Significant Degree of Fatigue in
CFS
- While fatigue is difficult to measure it is incorrect that to state
that its presence does not assist physicians in the diagnosis of any disease
process. Even the International (CDC) Definition takes pains to emphasize
the unusual severity of the fatigue seen in CFS
calling it‘severe
disabling fatigue’ and
stating that
“in our conception of the
chronic fatigue syndrome, the symptom of fatigue refers to
severe mental and physical exhaustion, which differs from
somnolence or lack of motivation”. Studies indicate high disability
rates and extremely low quality of life rankings.
CFS
– as most ME advocates well know - is not mere fatigue.
A Significant Clinical Feature -
Fatigue occurs in many diseases but few diseases display the kind
(both physical and mental) or the level of fatigue or exhaustion found in
CFS. Far from being a throw away symptom severe and
incapacitating fatigue is unusual enough to draw the attention of increasing
numbers of researchers. Dr. Friedman reported significant increases in the
number of studies focused on fatigue had occurred in the last five years at
the 2007 IACFS Conference. Diseases and disorders such as multiple
sclerosis, cholestatic liver disease, post-cancer disorder and fibromyalgia
are characterized by fatigue severe enough to be the subject of study. All
can be initiated by an infectious event and research suggests immune/central
nervous system dysfunction play an important role in each. Interestingly
study findings in all these diseases are generally coherent with those found
in CFS
and therefore, since ME findings borrow extensively from
CFS
research studies, on ME as well.
No one likes the word ‘fatigue’ – as noted earlier it
obscures the post-exertional problems that are characteristic of
CFS/ME and CFS and both
ME and CFS
advocates would do well, I believe, to continue to highlight that
difference. To ignore that fatigue is present in ME, however, is to turn
ones back on the fifty years of ME research and much interesting research
today into the cause of severe fatigue. ME advocates attempts to distance
themselves from the crude stamp of fatigue are easily understood but turning
their backs on an important part of their own disease is unwise and using
fatigue as a hammer to divide CFS
patients in the US from ME patients elsewhere is not only incorrect but is
surely unproductive at a time when ME/CFS
or if you like ME and CFS face so many
obstacles.
________________________________
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Chaudhuri, A. and P. Behan. 2004b. Fatigue in neurological disorders. Lancet
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Epidemic myalgic
encephalomyelitis. 1978.
British Medical Journal 3, June 1978, 1436.
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Ramsey, A.,
Dowsett, E., Dadswell, J., Lyle, W., Parish, J. 1977. Icelandic disease
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