With Myalgic Encephalomyelitis the sufferers and their parents/carers have enough to
So why are some groups and individuals advocating a change of name to Myalgic Encephalopathy?
Why is there a debate on changing the established name which is recognised
by the World Health Organisation as a neurological illness?
Background to Myalgic Encephalomyelitis
ME is formally recognised by the World Health Organisation code
ICD-10-G93.3 as a neurological illness.
The illness has been called Myalgic Encephalomyelitis in the U.K. since 1956.
Although the USA called it CFS other countries such as Canada and countries in
Europe also referred to it as Myalgic Encephalomyelitis.
Dr. Byron Hyde's description of ME from the
Invest in ME Conference
Meanings of the different terms
Myalgic Encephalomyelitis inflammation of the brain and spinal cord)-
Myalgic Encephalopathy (any non-inflammatory disorder affecting the brain)
There are some (doctors and certain charities) who claim that the problem with
ME is that there is no brain inflammation (the "itis" in encephalomyelitis).
So certain people/organisations have decided to keep ME but instead change E to be encephalopathy.
As seen in the above definition this means disease or dysfunction of the brain without inflammation.
However, many distinguished scientists have questioned this abandonment of itis.
Professor Malcolm Hooper describes it as dangerous to abandon encephalomyelitis
- see links below.
In Kevin Short's paper The Terminology of ME & CFS' Dr. Bruce Carruthers (author of the Canadian guidelines
('Canadian Diagnostic and Treatment Protocols) is quoted as saying
'The Politics around this are horrendous, and the motive for any name change
would seem to have less than the good of mankind at heart. I would not
favour any kind of name change, since -itis is well established in the name
ME, and there is no good reason for changing it, since - opathy would not
reduce our state of ignorance re ME but serve to further confuse everyone-
perhaps that is one of the motives behind the suggestion." [Dr Bruce
Carruthers, April 2005].
One or two charities have been arranging for a change of name to
In a context where ME is not being taken seriously as a
neurological illness, and is therefore lacking in research funding, it seems an
odd choice of policy to undermine the validation of the World Heath Organisation
encoding and put forward a name which is likely to help cast even more doubt on
the authenticity of the illness in the first
The people proposing the use of encephalopathy claim there
are no signs of inflammation yet they talk about the illness and refer to it
being the same as Ramsay's definition 1956.
To quote Malcolm Hooper again -
the claims of some psychiatrists, it is not true that there is no
evidence of inflammation of the brain and spinal chord in ME; there is, but
these psychiatrists ignore or deny that evidence."
'It is accepted by the most experienced ME clinicians that some degree of
encephalitis has occurred both in patients with ME and in those with post-polio
syndrome: the areas chiefly affected include the upper spinal motor and sensory
nerve roots and the spinal nerve networks traversing the adjacent brain stem
(which is always damaged). (45) In nearly every patient there are signs of
disease of the central nervous system.'
Links for Further Reading
What IiME thinks
There are a great deal of research papers detailing Myalgic Encephalomyelitis.
To change the name is, we agree with Professor Hooper,
It will make it harder to track and correlate previous
scientific works on ME.
It is 50 years since ME was given the name encephalomyelitis.
Myalgic Encephalomyelitis has been used in medical
literature since 1956.
The term is listed by the World Health Organisation under
Myalgic Encephalopathy is NOT classified by the World Health Organisation in
To change to another name adds nothing to the cause of ME
sufferers and will only cloud the debate in favour of those attempting to
portray the illness as a somatoform illness.
Until a clear alternative is agreed then Invest in ME will continue to call ME
- the correct name.
International Science Symposium
on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ME/CFS -
click here -
" The name myalgic
encephalomyelitis ME would be adopted to better reflect the science and
seriousness of the clinical picture in preference to the misleading label of
chronic fatigue syndrome CFS"