The Nightingale Definition of Myalgic Encephalomyelitis (M.E.) by Dr Byron Hyde 2007
The Nightingale defintion of M.E.' and 'The complexties of diagnosis' are now also available together in book form from Lulu. The second edition includes one extra paper.
This book is also now available at Amazon. (Buy the book using this link and a percentage of the purchase price will be donated to the HFME.)
Since the Nightingale Research Foundation's publication in 1992 of its textbook, The Clinical and Scientific Basis of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, there has been a tendency by some individuals and organizations to assume that M.E. and CFS are the same illness. Over the course of two International Association of Chronic Fatigue Syndrome (IACFS, formerly the American Association of CFS) conferences, there have been suggestions that the name CFS be changed to M.E., while retaining the CFS definitions as a basis for such change. This does not seem to me to be a useful initiative: it would simply add credence to the mistaken assumption that M.E. and CFS represent the same disease processes. They do not.
M.E. is a clearly defined disease process. CFS by definition has always been a syndrome
At one of the meetings held to determine the 1994 U.S. Centers for Disease Control and Prevention (CDC) definition of CFS, in response to my question from the floor, Dr. Keiji Fukuda stated that numerous M.E. epidemics he cited the Los Angeles County Hospital epidemic of 1934, the Akureyri outbreak of 1947-48 and the 1955-58 Royal Free Hospitals epidemics-- were definitely not CFS epidemics. Dr. Fukuda was correct.
The Psychiatric Label
Unfortunately many physicians and some senior persons in governments, including Great Britain, Norway and to a lesser degree the USA and Canada treat CFS as a psychiatric illness. This view has been arrived by some physician's readings of the CFS definitions from CDC. Indeed, despite clear signals in the 1994 CDC definition that CFS is not a psychiatric disease, each of the CDC definitions and their addenda referring to CFS remain open to interpretation as a psychiatric rather than a physical illness. This is not a view to which I subscribe. It is the CFS definitions themselves that give rise to this inaccuracy. Consider the following:
(a) What other physical disease definitions essentially state that if you discover the patient has any physical injury or disease, then the patient does not have the illness CFS? In other words if you have CFS then it does not result in or cause any major illness. What else could CFS then be but any number of various psychiatric, social, hysterical or mendacious phenomena?
(b) The various CDC administrations dealing with the subject have clearly stated that CFS is a physical, not a psychiatric disease. However, is there any other definition of any physical disease that is not provable by scientific and clinical tests? Only psychiatric diseases are not clearly verifiable by physical and technological tests.
(c) What other physical disease definition requires a six month waiting period before the illness can be diagnosed? Any physician knows that to treat a disease adequately you have to be able to define the disease at its onset and treat it immediately in order to prevent chronic complications from arising. There are simply no other disease definitions that have ever been assembled similar to the CFS definitions.
I believe it essential to define clearly Myalgic Encephalomyelitis. That is what the Nightingale definition of M.E. sets out to do
A simplified definition of Myalgic Encephalomyelitis
Myalgic Encephalomyelitis is:
1 A variable and biphasic acute onset disease
2 Primary Infection Phase: The first phase is an epidemic or endemic infectious disease generally with an incubation period of 4 to 7 days, where in most, but not all cases, an infection is evident.
3 Chronic Phase: The second and chronic phase follows closely on the first phase, usually within two to seven days, and is characterized by a measurable diffuse change in the function of the CNS. This is the persisting disease that most characterizes M.E. and is demonstrated by the following:
4 Testable Brain Changes: This second phase becomes chronic and is characterized by various measurable and clinical dysfunctions of the cortical or cortical and sub cortical brain. If the patient's illness is not persistently measurable using SPECT, PET or QEEG and/or Neuropsychological changes then it is not M.E. These changes can be roughly characterized as to severity:
1. Type 1: where one side of the cortex is involved. These patients have the best chance of spontaneous recovery.
2. Type 2: where both sides of the cortex are involved: These patients have the least chance of spontaneous recovery.
3. Type 3: where both sides of the cortex, and either one or all of the posterior chamber organs, the Pons and Cerebellum, the sub cortical and brain stem structures are involved. Type 3 are the most severely affected patients and the most likely to be progressive or see little or no improvement with time.
5 Pain Syndromes: The pain syndromes associated with the acute and chronic phases of M.E. may include (a) severe headaches of a type never previously experienced, (b) often associated with neck rigidity and occipital pain, (c) retro-orbital eye pain, (d) migratory muscle and arthralgia pain, (e) cutaneous hypersensitivity and (f) fibromyalgia type pain. These pain syndromes tend to decrease over time.
6 Neuropsychological Changes: There are neuropsychological changes that are measurable and demonstrate short-term memory loss, cognitive dysfunctions, increased irritability, confusion, and perceptual difficulties. There is usually rapid decrease in these functions after any physical or mental activity. This feature may improve over a period of years in patients with adequate financial and social support.
7 Major Sleep Dysfunction: including all forms of sleep dysfunction and day time alertness and sleep reversals.
8 Muscle Dysfunction: This feature may be due to vascular dysfunction or peripheral nervous or spinal dysfunction and includes both pain and rapid loss of strength of muscle function after moderate physical or mental activity.
9 Vascular Dysfunction: This is the most obvious dysfunction when looked for and probably is the cause behind a significant number of the above complaints. Vascular change is most evident in patients with:
a. POTS: severe postural hypotension.
b. Cardiac irregularity: on minor positional changes or after minor physical activity, including inability for the heart to increase or decrease in speed and pump volume in response to increase or decrease in physical activity.
c. Raynaud's Disease: vasoconstriction, blanching, coldness and pain of extremities. This is in part the cause for temperature dysfunctions seen in M.E.
d. Bowel Dysfunction: vascular dysfunction may be the single most causal basis behind bowel dysfunction when it occurs
10 Endocrine Dysfunction: This feature is common and tends to be a late appearance and is most obvious in the:
a. Pituitary-thyroid axis: This is common. Changes in serum TSH, FTI, FT4, Microsomal Ab., PTH, Calcium and phosphorus rarely occur until one or more years after illness onset and usually only after several years. This can be followed by ultrasound of the thyroid gland where a steady shrinking of the thyroid gland occurs with or without the development of non-serum positive Hashimoto's thyroiditis (a seeming contradiction of terms) and a significant increase in thyroid malignancy. Serum positive changes occur only after years.
b. Pituitary-adrenal axis changes: this finding is infrequent.
c. Pituitary-ovarian axis changes:
d. Pituitary-Bladder dysfunction: occurs frequently in the early disease in some people. It is unknown if the cause is due to this link.
*HIGHLY RECOMMENDED* This paper by Dr Hyde, and the two other papers below are probably the three most important papers on M.E. available. They are absolutely essential reading for everyone with any interest in Myalgic Encephalomyelitis (or 'CFS').
A New and Simple Definition of Myalgic Encephalomyelitis and a New Simple Definition of Chronic Fatigue Syndrome & A Brief History of Myalgic Encephalomyelitis & An Irreverent History of Chronic Fatigue Syndrome by Dr Byron Hyde 2006
‘Do not for one minute believe that CFS is simply another name for Myalgic Encephalomyelitis (M.E.). It is not. Though CFS is based upon a typical M.E. epidemic, in my opinion it has always been a confused and distorted view of reality. The invention of Chronic Fatigue Syndrome has to be one of the most curious cases of inventive American scientific imperialism that one could imagine. It is my opinion that the CDC 1988 definition of CFS describes a non-existing chimera based upon inexperienced individuals who lack any historical knowledge of this disease process. The CDC definition is not a disease process.’
The Complexities of Diagnosis by Dr Byron Hyde MD 2003
The Nightingale defintion of M.E.' and 'The complexties of diagnosis' are now also available together in book form from Lulu
This book is also now available from Amazon. (Buy the book using this link and a percentage of the purchase price will be donated to the HFME.)
The physician and patient alike should remember that CFS is not a disease. It is a chronic fatigue state as described in four definitions starting with that published by Dr. Gary Holmes of the CDC and others in 1988 (Holmes, Kaplan, Gantz, et al., 1988; Holmes, Kaplan, Schonberger, et .al., 1988). The definition created by Lloyd, Hickie, Boughton, Spencer, and Wakefield (1990) is also widely used in Australia. There are two subsequent definitions. The Oxford definition of 1991 (Sharpe et al., 1991) and the 1994 NIH/CDC definitions (Fukuda et al., 1994) are basically, with a few modifications, copies of the first definition. Where the one essential characteristic of ME is acquired 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 these four 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."