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working to improve care for people living with:
Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) are the same condition. CFS was the name coined by the CDC in the late 1980s. Patient and research groups objected to the name because simple fatigue does not describe the illness whereas the term fatigue stigmatizes patients who have struggled to have the condition recognized by the medical community. While ME (“muscle pain” and “inflammation of the brain and spinal cord.”) may not be an adequate description of the condition -ongoing research is painting a more complex picture- it sounds more scientific and it is the name that has stuck. Since both names are widely used ME/CFS is a common compromise.
CareNow Ontario will use the term Myalgic Encephalomyelitis (ME) on this website and in associated documents, unless specifically referencing a document that uses a different term. Over the years other terminology has been used (e.g., ME/CFS, chronic fatigue syndrome). The use of ME is in keeping with patient preference and the terminology that has been adopted by the ICanCME Research Network.
Myalgic encephalomyelitis (ME)stands for “muscle pain” and “inflammation of the brain and spinal cord.” ME is a serious, complex and debilitating condition causing a wide range of symptoms. It affects many people in Ontario and worldwide. In spite of recent research clearly demonstrating many biological abnormalities across many body systems, people living with ME face lingering stigma, in part because the underlying mechanisms of the disease are not known and a lack of funding for research has perpetuated this lack of knowledge. The name by which it has long been known, ‘chronic fatigue syndrome’ is another major reason for stigma.
Chronic fatigue syndrome was the name given to the illness in 1988 by a group convened by the Centers for Disease Control and Protection (CDC) to come up with a research definition for the bewildering ‘new’ illness that had resulted in outbreaks in Lake Tahoe, Nevada and in New York State. This became known as the Holmes criteria, or as the CDC 1988 criteria, for chronic fatigue syndrome. The chronic fatigue syndrome name was chosen as it was felt that ‘chronic fatigue’ amongst all the other symptoms present best defined the illness. This name was retained when the criteria were revised in 1994, also by a large working group convened by the CDC in what became known as the Fukuda criteria for chronic fatigue syndrome. Neither the Holmes nor the Fukuda definitions were intended for clinical purposes.
Myalgic encephalomyelitis (at that time being called benign myalgic encephalomyelitis) first appeared in the medical literature in the mid 1950s. The disease described a complex illness with a variety of symptoms including tender lymph nodes, malaise, sore throat, muscle pain and signs of encephalomyelitis. In 1969, benign myalgic encephalomyelitis was added to the International Classification of Diseases (ICD) in the neurological category (diseases of the nervous system) as an included term to post-viral fatigue syndrome and there it remains, although the benign has been dropped. In 1970 an influential paper out of the UK suggested that this condition (at least that experienced in the outbreak at the Royal Free hospital in 1955) was epidemic hysteria. This paper continued to influence thinking about the illness as being psychogenic in origin for many years, even though the hysteria hypothesis was discredited as more and more biological abnormalities were found.
Although this is skipping ahead in the timeline, in 2011 a group of international experts created a consensus case criteria for myalgic encephalomyelitis (ME), using the Canadian Consensus Criteria for ME/CFS as the starting point but breaking with the use of ‘chronic fatigue’ in the name of the disease, citing reasons we’ll get back to later.
When the IOM/NAM wrote their report (2015) they proposed a new name for the disease — Systemic Exertion Intolerance Disease (SEID). They picked this name for several reasons:
The Institute of Medicine (IOM) (now the Academy of Medicine) in their 2015 ground-breaking report “Myalgic encephalomyelitis /Chronic fatigue syndrome: redefining an illness” noted that using the name chronic fatigue syndrome for the illness resulted in “trivialization and stigmatization for patients afflicted with this illness” and should not be used.
In ME/CFS the fatigue is different. “It’s not the fatigue that someone who is completely healthy might feel if they were just tired. It’s a very different, complex, and much more severe picture in ME/CFS.” Beth Pollack, Research scientist at MIT specializing in chronic diseases.
No other fatiguing disease has ‘chronic fatigue’ attached to its name – e.g. cancer/chronic fatigue, multiple sclerosis/chronic fatigue – except ME/CFS. Fatigue in other conditions is usually proportional to effort or duration with a quick recovery and will recur to the same extent with the same effort or duration that same or next day.
In ME/CFS fatigue does not manifest in way it does in other fatigueing diseases. In many cases the fatigue experienced is not proportional to effort, the recovery is not quick and there is a “reduced ability to undertake the same activity within the same or several days.
ME is the term the Canadian Institutes of Health Research-funded Canadian research network ICanCME uses. Just as ME/CFS supplanted ‘chronic fatigue syndrome’ in US government institutions and may be poised to do the same in the UK, many patients along with a number of researchers and clinicians are working toward ME being broadly accepted.
There are some who would like to see a name chosen that focuses more on the post-viral or multi-systemic nature of ME/CFS. A very significant proportion of those with “Long Covid” meet the diagnostic criteria for ME/CFS. Long Covid is recognized as being a complex multi-system disorder. There is a growing recognition within the scientific community that ME/CFS is also a complex disorder that may involve multiple systems as well.
However, Chronic Fatigue Syndrome (CFS) is still very much in use, so just because we use ME doesn’t mean everyone does.
Chronic fatigue syndrome is the term used by the pertinent service and diagnostic codes within the OHIP billing system (how doctors get paid), so it is very possible that if you get a diagnosis in Ontario your doctor, unless they have had specialized training, will use the term ‘chronic fatigue syndrome.’
CFS is what the doctors know and this is what the diagnosis and billing code system says should be used.
ME/CFS is also a term that is used by some, including those in advanced practice: it bridges between the term in the billing system and ME. The Task Force on Environmental Health made a recommendation that the billing and diagnostic codes be updated to include myalgic encephalomyelitis/chronic fatigue syndrome but this has not yet been acted upon.