A Rose By
Any Other Name
ME
has already been called the ‘Disease of a Thousand Names’, yet, in the
Spring of 2001, one of the ME Charities has just applied to the
Charities Commission for another change. This time, it is from Myalgic
Encephalomyelitis to Myalgic Encephalopathy, that is: from muscle pain
accompanied by inflammation of the brain and spinal cord to muscle pain
and damage to the brain and spinal cord of unknown origin. This clumsy
euphemism will not only bloom less sweetly than it’s predecessors but
does not fit the facts. For example, in reply to questionnaire sent to
the most severely affected patients with ME in the UK, 2/3 ascribed
their present condition to a virus infection.1 Moreover,
this change will not benefit research nor relieve the confusion and
disbelief which blocks access to standard medical care for these
patients. It will, however, preserve the acronym ‘ME’ – a historical
logo which still retains its integrity in many parts of the world and
which, if replaced, would not only add to the present chaos, but prove
extremely expensive in terms of office stationery.
Historical Background: The earliest definitions were brief but
succinct, based on clinical observation and accompanied by a checklist
of symptoms. WALLIS (1995) provided a concise list with appropriate
variations for children and adolescents, while RAMSAY (1956) introduced
the descriptive term (Myalgic encephalomyelitis), which has stood the
test of time over half a century in the UK, Europe, Canada and
Austrialasia.
Fatigue States: These definitions first arose in the USA following the
1984 Lake Tahoe epidemic (which was misattributed to a Herpes Virus
infection). Both the earliest definition (HOLMES et al, 1988) and its
revision (FUKUDA, 1994) elevated tonsillitis, glandular enlargement and
fatigue to unreal importance while overlooking the characteristic
encephalitic features of the genuine illness. These mistakes also
inflated the possibility of a psychiatric diagnosis, leading to the
incorporation of such a heterogeneous population of psychiatric and
non-psychiatric causes later on, that research groups of different
persuasions were unable to compare results or evaluate treatment.
What
Are the Facts: the tools we can use today to study the brain offer
possibilities which were unimaginable 50 years ago2. These
include Molecular Biology: for example PCR – a microbiological technique
capable of amplifying and identifying minute fragments of viral genes,
hidden away in internal organs (such as brain, heart or muscle 3)
while a test for rapid diagnosis (within five hours) is currently
available. These tests indicate that viruses from the polio group, or
related to it, are involved both in the late effects of ME and the Post
Polio Syndrome 4. Brain Imaging: the use of CT, MRI, SPECT
and PET scans clearly indicates that metabolic dysfunction in the brain
stem and the spinal nerve radiations which transverse it, are initially
associated with viral (inflammatory) damage and are the major cause of
the cardinal symptoms of ME – central fatigue, stress induced weakness,
autonomic nervous dysfunction and the breakdown of homoeostasis over
hormonal and other vital functions5.
Conclusion: Modern technology has now served to confirm and to detail
the meticulous clinical and scientific observations made about ME before
1988! We can rest assured that this serious disability can arise (like
polio) from an initially trivial infection which has epidemic and
pandemic potential but we need to give further thought to any name
change. We should, instead, be making maximum use of modern and
effective means of diagnosis, prevention and management.
References:
1.
Lawrence S. Epidemiological Study submitted by the 25% ME Group to the
CMO’s Working Party, July 2000.
2.
Greenfield S. The Human Brain – A Guided Tour. 1997. Weidenfeld and
Nicholson. London
3.
Richardson J. Myalgic Encephalomyelitis/CFS and Enterovirus Mediated
Organ Pathology. ISBN- 0-7890-1127-1 (In Press). The Haworth Press
Inc. London and New York.
4.
Dowsett EG. The Late Effects of ME – Can They Be Distinguished From The
Post-Polio Syndrome? Paper submitted to the APPG of MP’s on ME
(Westminster, 31/01001) and to the MSP’s (Edinburgh 04/04/01).
5.
Bruno
RL, Frick NM, Greange S, et al. Polioencephalitis And The Brain Fatigue
Generator Model Of Post-Viral Fatigue Syndromes. Journal of Chronic
Fatigue Syndrome. 1996; 2 (2/3): 5-27.
