Chronic Fatigue Syndrome
The Name 'Chronic Fatigue Syndrome' (CFS)
What is behind the name Chronic Fatigue Syndrome? How is it different to M.E.?
Why is there such an uproar surrounding the name? And why do some people want to change the name Chronic Fatigue Syndrome to something different?
Ah… the name Chronic Fatigue Syndrome . What a mess!
Of all the names for this illness, it is this particular term that seems
to be the centre of the confusion, indignation, and bad feeling that is
felt by the ME/CFS community.
You see, the term Chronic Fatigue Syndrome was introduced
in 1988, as a replacement term for ME . And to put it bluntly,
sufferers were outraged by this new term and its accompanying definition.
Because most sufferers do not believe that Chronic Fatigue Syndrome
describes the illness accurately.
What The Definition Of Chronic Fatigue Syndrome Fails To Include…
Indeed, most ME/CFS specialists and sufferers believe that the definition
for Chronic Fatigue Syndrome is far too different from the initial
description of ME to be considered as a suitable replacement.
In fact, there were 18 scientists on the panel that first defined Chronic
fatigue Syndrome. And two of the 18 scientists, Alexi Shelokov and
Gordon Parish, apparently refused to agree to the new definition, because of how different
it was to the original definition of ME .
There are two distinct and important differences between the definitions
for Chronic Fatigue Syndrome and ME :
1. Exercise Intolerance
One of the things that distinguishes ME from other illnesses is exercise
intolerance . ME sufferers generally get worse after exercise.
By comparison, people suffering from psychological disorders such as depression
or chronic fatigue (for which ME/CFS is often mistaken and vice versa) do
not experience exercise intolerance. In fact, if anything, people with depression
are said to get better with exercise.
Yet the presence of exercise intolerance is not required
in the definition of Chronic Fatigue Syndrome.
This leaves the illness wide open to include many other illnesses, both
medical and psychiatric. Indeed, because of the way it is ‘so loosely’ defined, many people believe that the specific name, Chronic
Fatigue Syndrome , is actually an ‘umbrella’ term for a
number of illnesses (some unknown).
2. Inflammation Or Infection Of The Brain Or Spinal Cord
The second major difference between the definitions of ME and CFS is that
the definition of ME (Myalgic Encephalomyelitis) states that an
inflammation or infection of the brain or spinal cord is present. In contrast,
CFS does not require this to be present.
So, two very distinct and important factors that are present in the definition
of ME, have been totally excluded from the definition of CFS.
The Effects Of Including The Word ‘Fatigue’
Also, the name Chronic Fatigue Syndrome focuses on fatigue
as the major symptom. Many feel that this trivialises the illness:
- Firstly, fatigue does not adequately describe the
profoundness of that particular symptom. It in no way conveys
the seriousness and severity of that particular symptom, and is felt by
many to be somewhat of an insult.
- Secondly, the name is misleading because although ‘fatigue
and exhaustion’ (for want of a better phrase) are symptoms, they
are not the only ones.
So it is felt that the name Chronic Fatigue Syndrome trivialises
an otherwise extremely serious illness.
The Suspicious Rise Of The Term Chronic Fatigue Syndrome
A large part of the uproar among the ME/CFS community has stemmed from
the creation of the term Chronic Fatigue Syndrome , and its controversial
If you are new to the ME/CFS community, it is likely that you will find
the sheer amount of politics that surround this particular name and its
definition (and those who created it), quite surprising (and tiring). Nevertheless,
there are circumstances surrounding the creation of the term and definition
of Chronic Fatigue Syndrome which merit mentioning…
Although I do not usually include things like this, the following quote
seems important if we are to understand the creation of the term Chronic
Fatigue Syndrome :
"In the US in the late 1970s and 1980s there seemed to be a remarkable
rise in incidence of a condition indistinguishable from ME, with manifestations
of serious neuro-immune disease and profound incapacity to the extent
that the powerful insurance industry
The insurance industry was concerned that, because there is no National
Health Service in the US:
field could change from an epidemiological investigation into health
insurance nightmare” [ref
The result was a determination to suppress
the true symptomatology [of ME] and to construct a new case “definition”
for which insurers could not reasonably be liable: the condition was
henceforth to be called ‘Chronic Fatigue Syndrome ’ or CFS
and emphasis was to be on chronic “fatigue” as the primary
The case definition required every sign of organic illness to be excluded
before the diagnosis of “CFS” could be made. As a result,
the view that patients were clearly afflicted by serious neuro-immune
illness was to be strenuously down-played for many years [ref
-- E.P. Marshall, M. Williams, M. Hooper, What
Is ME? What Is CFS? --
Pretty shocking stuff huh?
As to how much truth we are to place on this ‘conspiracy theory’,
I do not know. There does seem to be evidence to back the theory up, but
again, how reliable that evidence is, I do not know. Suffice to say, I felt
it was documented by enough sources to make it worth mentioning here.
Whether you believe it or not, is up to you…
The Physical-Psychological Debate
It’s very important to bear in mind that the name Chronic Fatigue
Syndrome means different things to different people:
"[In 1988] in the UK, psychiatrist Simon Wessely rose to prominence.
Wessely leads a group of UK doctors, mostly but not exclusively psychiatrists,
who have colloquially become known as the “Wessely School”. [ref 18]
(…) He is well-known for his
strongly-held beliefs that neither ME nor Gulf War Syndrome exists,
[ref 19] and that such
patients are mentally, not physically, ill.
(…) The present confusion has been compounded by the fact that the term “CFS” has been
included by the WHO in the latest revision of the International Classification
of Diseases as one of the terms by which ME has become known.
In practice, this has come to mean that when referring to “CFS”,
some doctors (mostly some UK psychiatrists led by Simon Wessely) are talking about psychiatric illness involving
whilst international experts are talking about ICD-CFS, which is synonymous
It is important to be aware that published
international research on CFS (as distinct from UK psychiatric research
on CFS) reflects patients who are likely to have ME rather than psychiatric
The essence of the confusion concerns the use in the UK of the combined
term “CFS/ME”, given that “CFS” means different
things to different people.
(…) ME/ ICD-CFS is formally classified
as a neurological disorder in the WHO International Classification
of Diseases. The whole area of terminology has become a minefield for
the unwary, to the serious detriment of patients.
(…) It is important to be familiar with the fact that “chronic
fatigue” and chronic “fatigue
syndromes” do not equate with chronic fatigue syndrome
(CFS) or with ME."
-- E.P. Marshall, M. Williams, M. Hooper, What
Is ME? What Is CFS?, December 2001, p20 --
Now here’s the interesting part…
There exist quite a few definitions of Chronic Fatigue Syndrome (at least
9). But interestingly, Simon Wessely (mentioned in the quote above) was
involved in the two most commonly used criteria (the 1991 Oxford case definition
in the UK, and 1994 CDC case definition in the US). In fact, he and his
colleagues actually wrote the 1991 Oxford criteria for Chronic Fatigue Syndrome
Needless to say, both versions suggest that CFS is more psychological than
physical and neurological.
Regardless of the Wessely school’s controversial beliefs, ME/CFS
is indeed a real, physical illness, proof
of which you can read about here…
Chronic Fatigue Syndrome Means Different Things To Different
OK, so to summarize, the term Chronic Fatigue Syndrome (or CFS
- is believed by many to include subgroups of illnesses,
some of which are yet unknown (more…);
- does not require that a patient experiences
exercise intolerance (a pre-requisite for diagnosing Myalgic
- means different things to different people (especially in the UK):
- the World Health Organisation (and most of the
ME/CFS specialists around the world, for that matter) believe it’s
a real, physical, neurological disorder (more…);
- Confusingly, WHO classifies CFS as another name for ME.
But since there is a difference
between Chronic Fatigue Syndrome and M.E., people have had to use the term ICD-CFS
(which is the same as ME) to distinguish it from the
term CFS (that is different to ME). The term
ICD-CFS also helps to distinguish the established neurological
illness (ME/ICD-CFS ) from the psychiatric illness proposed by
the Wessely School (see below). (More about
I know, I know - confusing.
- despite evidence to the contrary (more…),
the Wessely School insist that this illness is psychological.
This belief is unfortunately still held by many (misinformed) health
professionals too. (More about ME/ ICD-Chronic Fatigue Syndrome and medical scepticism …)
- is different to the terms 'Chronic Fatigue ' - and - 'Fatigue
Syndrome' , which describe psychological disorders.
"It is also true that Professor Simon Wessely and his colleagues
use the terms "fatigue", "chronic fatigue", "the
chronic fatigue syndrome (CFS)" and "myalgic encephalomyelitis
(ME)" as synonymous. Such obfuscation [confusion] has greatly hindered
-- Professor Malcolm Hooper , The
Terminology of ME & CFS --
For the WHO’s definitions of ME, CFS, PVFS, and Fatigue Syndrome, click here…
Category: Chronic Fatigue Syndrome, ICD-CFS, ICD-Chronic Fatigue Syndrome
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