|Image by Emerge Australia
The label Myalgic Encephalomyelitis includes several of the key characteristics of the
disease: myalgic (muscle pain), encephalo (brain), myel (spinal cord), itis
Myalgic - of
or relating to myalgia (muscle pain).
refers to the brain
relating to the spinal cord.
refers to inflammation.
Encephalomyelitis (ME) has been referred to as the "disease of a thousand
names", many outdated, inappropriate and misleading.
Other names being used or proposed for Myalgic Encephalomyelitis, such as Atypical Polio, Benign ME, Epidemic Neuromyasthenia, Chronic Fatigue Syndrome, Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), and Systemic Exertion Intolerance Disease, has led to a lot of confusion. Debate remains as to the most appropriate name for the illness. This lack of consensus has contributed to confusion and skeptism about ME in the broader community.
The label Myalgic Encephalomyelitis (ME) was first used in 1956 in an article in the Lancet medical journal to describe findings from the 1955 Royal Free Hospital outbreak in London, UK.
Myalgic Encephalomyelitis (ME) was classified as a neurological illness by the World Health Organisation (WHO) under ICD G93.3 in 1969.
The label chronic fatigue syndrome (CFS) was introduced later on in the US and caused so much confusion and created a deliberate focus on fatigue, leading to denial of more serious symptoms, lack of diagnosis, misdiagnosis, unnecessary psych referrals, inappropriate psych therapies, psych interference, poor criteria that ignore and omit PENE, also referred to as PEM, the cardinal feature of ME.
There is no illness called ME/CFS or CFS/ME despite some using the names interchangeably as ME/CFS or CFS/ME. Putting CFS first in the dual label and referring to CFS as 'also called ME' or 'now also known as ME' is incorrect and misleading.
Moreover, ME is not CFS and CFS is not ME. Some people with ME have been diagnosed with CFS and are receiving inappropriate treatments, in much the same way as those with CFS who are diagnosed as having ME who are being poorly managed.
The criteria for a diagnosis of Chronic Fatigue Syndrome (CFS) is less strict and there are concerns that the numbers of true ME patients may be over-estimated as a result.
We prefer to use the ME label as per the International Consensus Criteria (ICC) and we lobby for its adoption and use. We do however recognise that in some countries people with ME are diagnosed with CFS where the CFS label is used, and do not deny the debilitating chronic multi-system illness they endure.
See more about ME and the problems with labels, definitions and criteria in our Information Pack entitled 'The Situation of Myalgic Encephalomyelitis (ME) Patients in Ireland' in our 2018 blog post via this link.
How to pronounce Myalgic Encephalomyelitis.
A Brief Introduction to Myalgic Encephalomyelitis (ME)
• An Introduction to ME from 'Dialogues for a Neglected Illness' here.
• A broad look at ME from 'Broken Battery' via this link.