ME vs CFS
By S. Anderson, M.D.
In 1955, A. Wallis wrote a doctoral thesis for the University of Edinburgh called "An investigation into an unusual disease in epidemic and sporadic form in general practice in Cumberland in 1955 and subsequent years." It was complete with a symptom list that showed variations for adolescents. A year later, A. Ramsay introduced the name of myalgic encephalomyelitis in a paper published in the Lancet called "encephalomyelitis simulating poliomyelitis." Myalgic encephalomyelitis has withstood the test of time in many countries for nearly half a century.
Following the infamous Lake Tahoe, NV epidemic in 1984, a definition of "fatigue" has caused confusion and led to the 1988 definition of Holmes et al. of chronic fatigue syndrome. The name, denoting tiredness, makes it nearly impossible to convey the severity. It negatively impacts scientific methodology, thwarts private fundraising efforts, and elevates one symptom to an inflated status. The panel that renamed the disease had four scientists who had worked in this area. All four objected to the "CFS" label. All four refused to sign their name to the change and quit in disgust. They knew they were discussing an already known illness and not a novel one but there were members of the committee who said the existing name of ME was too unmanageable for Americans to pronounce.
The 1988 CDC (Centers for Disease and Prevention) definition was quickly found to be unreliable (Holmes et al) and the different definitions between ME and CFS confused the issue further. A revised definition by the CDC in 1994 (Fukuda et al) was even worse, being more inclusive and incorporating a population of psychiatric and non-psychiatric conditions but, despite the demands to do away with the faulty "fatigue definitions in favor of a scientifically based descriptive name, the federal government and federal committees have failed to go in this direction. Perhaps Jaon, et al put it best when he published "Politics, science and the emergence of a new disease: the case of chronic fatigue syndrome" (American Psychologist, 52/9) but the battle is unending.
Since 1994, the world has seen a plethora of epidemiological, neuroroanatomical, neuroendocrinlogical and neuropsychological data to support Myalgic Encephalomyelitis that the World Health Organization (WHO) lists under a neurological condition. There is a stalemate of what should happen despite the majority of both the patient and medical community's worldwide favoring ME. Indeed, the CDC has convened yet another committee including members of the imaginative world of psychiatrists from abroad to have a go at yet another definition.
A move in the United Kingdom has begun to change myalgic encephalomyelitis to myalgic encephalopathy. Encephalopathy means muscle pain with inflammation of the brain and spinal cord from some unknown entity yet technology has already confirmed the scientific observations of myalgic encephalomyelitis made decades ago with, but not limited to, CT, MRI, SPECT, and PET scans. In the United States, at least one physician, Charles Lapp, M.D., is promoting using myalgic encephalopathy which does nothing to aid research. It means only there is a brain disorder yet that could be the result of a stroke or other illness. Encephalomyelitis is much more specific. One group in England, the Myalgic Encephalomyelitis Association, changed its name to the Myalgic Encephalopathy Association causing an outcry among others using an illegal and non-existent name.
The National CFIDS Foundation, Inc. began their group with the goals of funding research as a priority and being against the abusive and trivializing name of chronic fatigue syndrome which is so often shortened to "chronic fatigue", a symptom found in many illness but particularly whose in the mental health arena. Because the impasse remains, the NCF believes that science will be able to break this impasse when it proves, beyond a shadow of a doubt, what this illness really is. Meanwhile, sneering animus continues to replace responsible journalism for the most part when it comes to addressing "chronic fatigue." We will continue to be against calling this illness "CFS". It is not "fatigue" and it is far from a "syndrome." We will prove this in time. Hopefully, it will be a shorter time than all have imagined.
The National CFIDS Foundation* 103 Aletha Rd, Needham Ma 02492 * (781) 449-3535 Fax (781) 449-8606