The Terminology of ME & CFS By Professor Malcolm Hooper


Terminology

The term BENIGN MYALGIC ENCEPHALOMYELITIS was first
introduced in the UK in 1956 by a former Chief Medical Officer
(Sir Donald Acheson) and not by Dr Melvin Ramsay as is
sometimes claimed. The word "benign" was used because it
was thought at the time that the disorder was not fatal (as
poliomyelitis could be, with which it had some similarity), but it
was quickly realised by clinicians that ME was not a "benign"
condition, as it has such high morbidity (i.e. such a lot of suffering
and ill-health), so by 1988 clinicians had stopped using the word
"benign" and referred to it as ME, the first to do so being Dr
Ramsay. However, the ICD still uses the term "benign" in its
classification.


MYO relates to muscle
MYOSITIS = inflammation of muscle

MYALGIA = pain in muscles (pain that is called "myalgic")

MYOPATHY = any disease or disorder of muscle

MYEL (or MYELO) relates to the spinal cord (the main nerve in
the body)

MYELITIS = inflammation of the spinal cord (NB. Not to be
confused with the other meaning of myelitis, which =
inflammation of the bone marrow, as in osteomyelitis)

MYELIN SHEATH = a layer of fatty white material that surrounds
and insulates nerve fibres

DEMYELINATION = the loss of this protective insulation round
nerve fibres (as seen in multiple sclerosis and sometimes also
in ME)

ENCEPHALON = the brain

ENCEPHALO = relating to the brain

"ITIS" on the end of a word = inflammation (eg. hepatitis =
inflammation of the liver)

So, ENCEPHALOMYELITIS = inflammation of the brain and
spinal cord

BENIGN MYALGIC ENCEPHALOMYELITIS therefore means a
non-fatal disorder (inflammation) of the brain and spinal cord,
with pain in the muscles

ENCEPHALOPATHY = any non-inflammatory disorder affecting
the brain

Despite the claims of some psychiatrists, IT IS NOT TRUE THAT
THERE IS NO EVIDENCE OF INFLAMMATION OF THE BRAIN
AND SPINAL CORD IN ME
: there is, but these psychiatrists
ignore or deny that evidence. For example:

1988 In conjunction with the University of Pittsburgh, the US
NIAID held a large research workshop called "Consideration of
the Design Studies of Chronic Fatigue Syndrome". There were
participants from the Centres for Disease Control and from the
National Institutes of Health. One of the presentations was by Dr
Sandra Daugherty, who reported that MRI scans on patients
demonstrated abnormalities consistent with demyelination and
cerebral oedema in 57% of patients studied. (It was at this
conference that it was recommended that the term "CFIDS" be
used instead of the term "CFS" on the basis of the immune
dysfunction that had been observed in the disorder).

1989 Detection of Viral-Related Sequences in CFS Patients
using Polymerase Chain Reaction W.John Martin (Nightingale
Research Foundation: 1989: 1-5

1990 Chronic Fatigue Syndrome and the Psychiatrist SE
Abbey, PE Garfinkel Canadian Journal of Psychiatry
1990:35:7:625-626

1992 A Chronic Illness Characterised by Fatigue, Neurologic
and Immunologic Disorders, and Active Human Herpesvirus
Type 6 Infection D Buchwald, PR Cheney, R Gallo, AL Komaroff
et al Annals of Internal Medicine 992:116:2:103 This paper
states "Magnetic resonance scans of the brain showed
punctate, subcortical areas of high signal intensity consistent
with oedema or demyelination in 78% of patients"

1994 Detection of Intracranial Abnormalities in Patients with
Chronic Fatigue Syndrome: Comparison of MR Imaging and
SPECT. RB Schawrtz, BM Garada American Journal of
Roentgenology 1994:162:935-941

1995 Pathophysiology of a Central Cause of Post-Polio Fatigue
Richard Bruno et al Annals of the New York Academy of
Sciences 1995:753:257-275

1997 A 56-year old woman with chronic fatigue syndrome
Anthony J Komaroff JAMA 1997:278:14:1179-1184

It is true that there is no evidence of inflammation of the brain or
spinal cord in states of chronic fatigue or "tiredness."

It is also true that neither the 1991 (Oxford) criteria nor the 1994
(CDC) criteria select those with ME, as they both expressly
include those with somatisation disorders and they expressly
exclude those with any physical signs of disease (as is the case
in ME), so by definition, patients with signs of neurological
disease have been excluded from study.

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 has greatly hindered research,
as pointed out in the 1994 Report of the National Task Force on
Chronic Fatigue Syndrome (CFS), Post-Viral Fatigue Syndrome
(PVFS) and Myalgic Encephalomyelitis (ME), published by
Westcare, Bristol and supported by the UK Department of
Health, which stated:

"Chronic fatigue syndromes remain poorly understood. Progress
in understanding them is hampered by:

the use by researchers of heterogeneous study groups

the use of study groups which have been selected using
different definitions of CFS

the invalid comparisons of contradictory research findings
stemming from the above".


The Report names psychiatrists Dr Simon Wessely, Dr Peter
White and Dr Michael Sharpe and acknowledged their help, but
then makes the point that "people who gave their help are not
necessarily in agreement with the opinions expressed" (page
87). It was said to be because those psychiatrists strongly
disagreed with the findings of the 1994 Westcare Report that in
1996 they produced their own report (the Report of the Joint
Royal Colleges on CFS (CR54), which was internationally
recognised as being biased and seriously flawed).


Classification

The WHO was founded in 1948.

The International Classification of Diseases (ICD) comes in two
volumes: Volume I is the Tabular List and is a list of codes plus
the name of the condition which goes with that code. Volume II is
the Code Index, which alphabetically lists all the phrases and
names of conditions commonly used for a condition, together
with the appropriate code.

The Tabular List (Volume I) does not list
everything which is in the Code Index (Volume II).

Benign myalgic encephalomyelitis (ME) has been classified in
the International Classification of Diseases (ICD) as a
neurological disorder since 1969, when it was included in ICD-8
at Volume I: code 323: page 158 and in Volume II (the Code
Index) on page 173. (ICD-8 was approved in 1965 and
published in 1969).

Prior to 1969, the term benign myalgic encephalomyelitis (ME) did not appear
in the ICD, but non-specific states of chronic fatigue
were classified with neurasthenia under Mental and Behavioural Disorders. 


Benign myalgic encephalomyelitis (ME) was included in ICD-9
(1975) and is listed in Volume II on page 182.

The term "Chronic Fatigue Syndrome" was not introduced by
Holmes et al until 1988 and therefore did not appear in the ICD
until 1992, when it was listed as an alternative term for benign
myalgic encephalomyelitis (ME). Another alternative term listed
is Post-Viral Fatigue Syndrome.

In ICD-10 (1992), benign myalgic encephalomyelitis (ME)
continues to be listed under Disorders of the Nervous System at
G93.3, with the term Syndrome, Fatigue, Chronic, as one of the
descriptive terms for the disorder.

By contrast, in ICD-10 (1992), neurasthenia and other
non-specific syndromes of on-going or chronic "fatigue" are
listed at section F48.0 (Volume I, page 351). Non-specific states
of chronic fatigue are classified as Mental and Behavioural
Disorders, subtitled "Other Neurotic Disorders".

Note: benign myalgic encephalomyelitis (ME/CFS/PVFS) is
expressly excluded by the WHO from this section.

Note also that the WHO has confirmed in writing that "it is not
permitted for the same condition to be classified to more than
one rubric as this would mean that the individual categories and
subcategories were no longer mutually exclusive".

Therefore, ME/CFS cannot be known as or included with
neurasthenia or with any mental or behavioural disorder.


Professor Malcolm Hooper