Understanding M.E. and CFS
If a patient or a family member has tried to search the internet for an understanding of either Myalgic Encephalomyelitis (M.E.) or Chronic Fatigue Syndrome (CFS), they will have been overwhelmed by the multitude of technical descriptions and the numerous overlapping medical conditions. Both M.E. and CFS represent a complex, multi-system group of afflictions, adversely affecting the brain, heart, neuro-endocrine, immune and circulatory systems in our bodies and are two separate illnesses. At times, this has led to M.E. and CFS symptoms being confused with the symptoms for neurasthenia, multiple chemical sensitivities, fibromyalgia syndrome and chronic mononucleosis.
The US Centers for Disease Control and Prevention (CDC) first defined CFS in 1988. This definition was later rolled over to a more complex 1994 definition, which was subsequently corrected and corrected again. These CFS definitions have multiplied beyond the two CDC definitions and now include the Oxford Dictionary definitions of CFS (there are two of them), the Australian definitions, and the more recent Canadian definition that talks of M.E. / CFS as though they were the same illness. They are not.
M. E. has a clearly defined disease process while CFS by definition has always been a syndrome. In light of this state of affairs, the Nightingale Research Foundation has updated its Definition of M.E. (effective January 2007). There have been many attempts to define CFS, some described in our textbook, The Clinical and Scientific Basis of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. The Canadian Encyclopedia online also has a useful one.
The Complexities of Diagnosis
In 2003, Dr. Byron Hyde completed a chapter for L. A. Jason, P. A. Fennell and R. R. Taylor for their book Handbook of Chronic Fatigue Syndrome, John Wiley and Sons Inc., Hoboken N.J., titled “The Complexities of Diagnosis”1 (pdf format), Chapter 3. This chapter includes the following definition of CFS:
“The physician and patient alike should remember that CFS is not a disease. It is a chronic fatigue state where the one essential characteristic of M.E. is acquired Central Nervous System (CNS) dysfunction, that of CFS is primarily chronic fatigue. By assumption, this CFS fatigue can be acquired abruptly or gradually. Secondary symptoms and signs were then added to this primary fatigue anomaly. None of these secondary symptoms is individually essential for the definition and few are scientifically testable. Despite the list of signs and symptoms and test exclusions in these definitions, patients who conform to any of the CDC, Oxford, Australian and Canadian CFS definitions may still have an undiagnosed major illness, certain of which are potentially treatable. Although the authors of these definitions have repeatedly stated that they are defining a syndrome and not a specific disease, patient, physician, and insurer alike have tended to treat this syndrome as a specific disease or illness, with at times a potentially specific treatment and a specific outcome. This has resulted in much confusion, and many physicians are now diagnosing CFS as though it were a specific illness. They either refer the patient to pharmaceutical, psychiatric, psychological, or social treatment or simply say: “you have CFS and nothing can be done about it”. The CFS definitions have another curiosity. If in any CFS patient, any major organ or system injury or disease is discovered, the patient is removed from the definition. The CFS definitions were written in such a manner that CFS becomes like a desert mirage: The closer you approach, the faster it disappears and the more problematic it becomes.”
Some of the definition essentials required to accurately diagnose either M.E. or CFS, or any chronically ill patients group, include: