ME/CFS Society of WA: Brief History

Early records

References to a similar characteristically difficult to diagnose disease began to appear regularly in the medical literature, albeit under a confusing variety of different names, from the early 17th Century. A little later in the 19th Century it has even been suggested that Florence Nightingale and Sir Charles Darwin may have been two early prominent victims of the disease.

Endemic outbreaks

In the mid-20th Century attention was drawn to the disease by a series of endemic (cluster) outbreaks in various locations around the world. These occurred most prominently in Los Angeles (1934), The Royal Free Hospital in London (1955) and Lake Tahoe (1984), but also Adelaide (1949), Tapanui in New Zealand (1984) and Narrabeen in NSW (1988) amongst more than 70 documented outbreaks worldwide.

These endemic outbreaks were recorded under a confusing and exotic lexicon of names including; Epidemic Neuromyasthenia, Chronic Epstein Barr Virus Syndrome, Tapanui Flu, Iceland Disease, Low Natural Killer Cell Disease and Myalgic Encephalomyelitis to mention only a few.

Formal description

It was following the Royal Free Hospital outbreak that in the UK first Wallis (1955) and then Acheson (1959) made the earliest attempts to formally describe the disease, their descriptions focussing on the hallmark muscular and neurological symptoms, including ease of fatigability and potentially relapsing and remitting course. Acheson coined the term ‘Myalgic Encephalomyelitis’ (1956) reflecting the muscular, brain and CNS involvement thought characteristic of the disease. Later, Ramsay (1986) added to these descriptions drawing on his extensive first-hand experience of the Royal Free Hospital outbreak.

Benign Myalgic Encephalomyelitis was classified in 1969 as a neurological disease by the World Health Organisation in its International Classification of Disease (currently WHO ICD 10 G93.3).

Changing the focus

In 1984 an outbreak in Lake Tahoe eventually caught the eye of the US Centre for Disease Control (US CDC) which later published the first ever description of what they termed ‘Chronic Fatigue Syndrome’ (Holmes 1988). This ignored or failed to take into account the earlier work of experienced observers of the disease such as Ramsay, Acheson and others and in so doing omitted or under-emphasised many of its cardinal symptoms instead giving undue prominence to ‘chronic fatigue’. This description was later refined (Fukuda 1994) but continues to be widely criticised for being vague and non-specific, potentially defining a mixed and very broad group of illnesses.

A later attempt to refine the description of CFS in the UK (Oxford 1992) furthered the trend towards simplistic and vague ‘fatigue-centric’ descriptions. Later Australia controversially adopted the US CDC description of CFS in their RACP CFS Guidelines published in 2002 (see Unhelpful Guidelines) . By now many considered that CFS was little more than an ‘umbrella-term’ encompassing an ill-defined group of ‘fatiguing’ illnesses –a very different concept to the disease originally observed and described by Ramsay, Acheson and others.

Contaminated research

These vague and simplistic CFS definitions (Fukuda and Oxford) have been the most widely used in studies of the disease. Consequently, the mixed and very broad groups of patients they select have returned wildly varying and inconsistent data hindering better understanding of the disease and the development of appropriate care and treatments. Clearer understanding of the disease observed by Ramsay, Acheson and others, which they called ME, became lost within the broad, vague and confusing concept of CFS.

Canadian Guidelines 2003

Health Canada commissioned a new description of the disease (The Canadian ME/CFS Guidelines) in 2003. Compiled by a team of health professionals with unprecedented experience and knowledge of the disease this description built and expanded upon many of the original symptoms described by Ramsay, Acheson, etc. The description and accompanying treatment guidelines have been warmly embraced by people affected by the disease as well as by a growing number of health professionals both here in Australia and also worldwide. Mindful of the significant issues and controversy surrounding the diseases’ name the authors compromised referring to its as ME/CFS (see Which Name?).

A backward step

More recently the publishing of new clinical guidelines by the National Institute for Clinical Excellence (NICE) in the UK in 2007 has reverted to the trend of using vague ‘fatigue-centric’ descriptions of CFS (see Unhelpful Guidelines). The same trend persists within medical circles in the US and Australia today and is a major hindrance to better understanding of the disease and the introduction of improved treatments and care for those affected.

The combined term ME/CFS remains an uneasy compromise in use generally, but also by this Society.