With Myalgic Encephalomyelitis the sufferers and their parents/carers have enough to contend with.
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.
Myalgic Encephalomyelitis inflammation of the brain and spinal cord)- see here
Myalgic Encephalopathy (any non-inflammatory disorder affecting the brain) - see here
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 charity arranged for a change of name to encephalopathy.
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 place.
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 -
"Despite 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, dangerous.
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 code WHO-ICD-10-G93.3.
Myalgic Encephalopathy is NOT classified by the World Health Organisation in WHO-ICD-10-G93.3.
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 - MYALGIC ENCEPHALOMYELITIS - the correct name.
See also International Science Symposium on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ME/CFS - click here
For the Communique - 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"