Overview of ME and cfs : definitions and names

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(c) Dorothy Morris,
TSTC., HDT(Sec)., B.VET., Dip.RBM.
ME/CFS Researcher,
PhD candidate Deakin University
THERE SEEMS TO BE A LITTLE CONFUSION AROUND AT PRESENT REGARDING DEFINITIONS AND NAMES.

The briefest of summary:

Ramsay 1988, the definition by Melvin Ramsay is the definitive one of Myalgic Encephalomyelitis.  As Benign Myalgic Encephalomyelitis this condition is accepted in ICD code lists.  It is the Gold Standard for ME and persons to have ME'itis must conform to this definition.  It is the definition of a neurological condition.  The prolonged recovery after minimal exertion is the important hallmark of this definition.

London is based on Ramsay, but is not accepted as Ramsay's
definition is - and is a definition of Myalgic Encephalomyelitis (Dowsett et al 1994).

Holmes et al 1988, Fukuda 1992, are definitions of Chronic
Fatigue Syndrome.  Holmes et al is stricter than Fukuda (CDC)1992.  The emphasis is on fatigue.

Fukuda 1994 is known as the CDC definition.  It is a broad
general umbrella description of chronic fatigue syndrome. The emphasis is on fatigue.

Oxford definition (Sharpe et al 1991), is a very broad definition, and encompasses fatiguing conditions.  Psychiatric conditions and other fatiguing conditions can meet the broad criteria contained in this condition.

Interesting infection is an exclusion in these definitions!!!!

Summing up:

Myalgic encephalomelitis - defined by Ramsay 1988 (and
London).

Chronic Fatigue Syndrome (ie fatigue) - defined by Holmes et al 1988, Fukuda 1992, 1994.

(Note: Holmes et al has never been a definition of ME'itis.  It is incorrect for people to ask to return to the Holmes et al definition believing it to be a definition of ME'itis.  Holmes et al is a CFS definition.)

There is also a so-called Australian definition (Lloyd et al 1988), which is really a definition of Post-Viral Fatigue.

Now we find that there is now the use of the term Myalgic
Encephalopathy. There is no research definition for this
condition.  Without a research definition no research may be carried out on those with this condition.

Those who support this term - which broadly translates to Muscle Pain Brain Pathology - in lieu of Myaglic Encephalomyelitis, have adopted a broad name - which again leaves the condition open to 'piracy' by the psychosomatists - as many mental conditions
have a brain pathology, as well as it being a term which is
adopted by various behavioural disorders.  As we know that
CBT is prescribed for those with 'behavioural' or incorrect
thinking disorders - the term Myalgic Encephalopathy leaves the door open for those who emphasise that this is a psychiatric disorder.

A red herring has been dragged across the path of Myalgic
Encephalomyelitis - with a lobby saying that there is no 'itis'.

Melvin Ramsay (1956, 1957, 1986) had first hand knowledge of many persons with this condition - from the Royal Free outbreak - and he was happy with 'itis'.

Given the care with which Ramsay has defined this condition, and also his longitudinal studies, and the longitudinal studies of Richardson (1992, and his book published 2000), and the research articles by persons such as the Australian Pellew (1951, 1955), we can be very satisfied that this condition does qualify for the term 'itis' - which means inflammation.

The work of Pellew, which included pathology and autopsy
studies, showed that this was a form of atypical poliomyelitis. Ramsay also supported this hypothesis.  And this was at a time when poliomyelitis was a familiar condition and a scourge in the community.

Bruno (1998) in the US has followed this poliomyelitis research, with his research into post-poliomyelitis syndrome - a syndrome which is identical to Myalgic Encephalomyelitis apparently.

We can be satisfied that at onset there is 'itis' in ME.

Others why support 'opathy' point out that this 'itis' is not ongoing. Well neither is the 'itis' of poliomyelitis - and it does not change its name when the acute inflammatory stage is passed to polio-opathy.  No condition changes its name to denote the stage which the condition has reached.

So those who support 'opathy' using the argument that the 'itis' is not being found in those with long term Myalgic
Encephalomyelitis are being mischievous - and one has to
seriously ask whether they are really a subterfuge movement for the psychiatric paradigm (white-anting we would call it in Australia).

There is no definition of Myalgic Encephalopathy - and to try to promote this term without a definition leaves the term open to hijack by the psychiatrists - who will write their definition of what this condition is - and the statement by Richard Colman, General and Occupational physician, eBMJ, should be a warning of how the psychiatric arm would try to change the paradigm of this condition.

There is only one safe name, the name that is already defined, and accepted in the ICD codes as a neurological condition - that is, Myalgic Encephalomyelitis.  The world needs to be united in the support of this one condition, not trying to vary the name in anyway.  United we win, divided we fall - and 'opathy is an attempt to divide us, the patient population.

The term CNDS purporting to be yet another umbrella tier will only make it harder for those with ME'itis to be treated justly and emphatically. CNDS will still cover psychiatric conditions, such now covered under Fukuda 1994 and Oxford definitions - and we shall not be free of these connections.

At present there is a committee meeting in the USA to decide on yet another definition for this condition. Given the composition of the membership of that committee, the psychosomatists are out-numbering the persons who believe in the physical and organically defined ME'itis, so this will likely be yet another definition which emphasises 'fatigue' not neurology.

We must reclaim our correct name that was stolen from us
in 1988 by the Holmes et al definition - and return to the only proven and known name- Myalgic Encephalomyelitis.

References:

Bruno, R., Creange, S. & Frick, N. 1998,  'Parallels Between Post-Polio Fatigue and Chronic Fatigue Syndrome: A Common Pathophysiology?' American Journal of Medicine, vol.105, no.3A, pp.66-73

Colman, R. General and Occupational physician in the eBMJ, 7 January 2002. http://www.bmj.com/>www.bmj.com

Dowsett, E., Goudsmit, E., Macintyre, A., Shepherd,  C., et al.(1994), London criteria for myalgic encephalomyelitis,
<http://members.aol.com/Mewebsite/Brussels.html>

Fukuda, K., Straus, S., Hickie, I., Sharpe, M., Dobbins, J., Komaroff, A. and the International Chronic Fatigue Syndrome Study Group 1994, 'The Chronic Fatigue Syndrome: A
Comprehensive Approach to its definition and study', Annals of Internal Medicine, vol. 121, December 15, pp.953-959

Holmes, G., Kaplan, J., Gantz, N., Komaroff, A., et al. 1988, 'The CDC Definition : Chronic Fatigue Syndrome: A Working Case Definition', Annals Internal Medicine, vol. 108, no.3, pp.387-389.

Lloyd, A., Wakefield, A., Boughton, C., and  Dwyer, J. 1988, 'What is myalgic encephalomyelitis?' Lancet, vol.1, pp.1286-7(The Australian Definition).

Pellew, R.A.A. (1951), Clinical descriiption of disease
resembling poliomyelitis, Medical Journal of Australia, 1: 944.

Pellew, R.A.A.(1955) Further investigations on a disease
resembling poliomyelitis seen in Adelaide. Medical Journal of Australia, 2: 480.

Ramsay, A.M.(1957)  Encephalomyelitis in Northwest London.
An endemic infection simulating poliomyelitis and hysteria,
Lancet, 2: 1196.

Ramsay, A.M. (1986) 'Myalgic Encephalomyelitis: A Baffling
Syndrome With a Tragic Aftermath,' ME Association Journal
1986, UK.

Ramsay, A.M. 1988, Encephalomyelitis and Postviral Fatigue
States: The saga of Royal Free Disease, Gower Medical
Publishing, London

Ramsay, A.M. and O'Sullivan, E. (1956)  Encephalomyelitis
simulating poliomyelitis, Lancet, 1: 761.

Richardson, J. (1992) The Epidemiological and Clinical
Observations of a Rural Practitioner, in B. Hyde, J. Goldstein & P. Levine, (eds), The Clinical and Scientific Basis of Myalgic Encephalomyelitis/Chronnic Fatigue Syndrome, The Nightingale Research Foundation Ottawa.

Sharpe, M. Archard, L. Banatvala, J. et al (1991), 'A report - Chronic fatigue syndrome: Guidelines for research' Journal Royal Society of Medicine, vol. 84 pp.118-121 (The Oxford Definition).