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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! Chronic Fatigue Syndrome ( CFS )

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.

Why?

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 . Chronic Fatigue Syndrome ( CFS )

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:

  1. 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.

  2. 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 definition.

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 because alarmed.

The insurance industry was concerned that, because there is no National Health Service in the US:

“the field could change from an epidemiological investigation into health insurance nightmare” [ref 25]

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 symptom.

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 26]."

-- E.P. Marshall, M. Williams, M. Hooper, What Is ME? What Is CFS? --

 

Pretty shocking stuff huh? Chronic Fatigue Syndrome ( CFS )

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 “chronic fatigue”, whilst international experts are talking about ICD-CFS, which is synonymous with ME.

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 disorder.

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.

Chronic Fatigue Syndrome ( CFS ) 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 People…

OK, so to summarize, the term Chronic Fatigue Syndrome (or CFS ):

  1. is believed by many to include subgroups of illnesses, some of which are yet unknown (more…);

  2. does not require that a patient experiences exercise intolerance (a pre-requisite for diagnosing Myalgic Encephalomyelitis);

  3. means different things to different people (especially in the UK):
    1. 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…);
      1. 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 ICD-CFS …)

        I know, I know - confusing.

    2. 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 …)

  4. 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 research"

-- 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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