Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
Overview
Chronic Fatigue Syndrome, more properly called Myalgic Encephalomyelitis or Myalgic Encephalopathy, is a serious illness. It is not a joke.
Dr. Leonard A. Jason, PhD, says, "Patients with CFS are more functionally impaired than those suffering from type II diabetes mellitus, congestive heart failure, multiple sclerosis, and end-stage renal disease."
Live
Chat Q&A
with Chronic Fatigue Syndrome Research
and Policy Leader Dr. Leonard A. Jason, Ph.D.
ProHealth.com, August 14, 2007
At the November 3, 2006 Press Conference of the CDC and the CFIDS Association of America (quoted and discussed in A Medical Morass? below), Dr. Anthony Komaroff, MD, spoke about the neurological, immune, and energy metabolism abnormalities of chronic fatigue syndrome patients. "There are now over 4,000 published studies that show underlying biological abnormalities in patients with this illness," he said. "It's not an illness that people can simply imagine that they have and it's not a psychological illness."
Description
ME/CFS is not a vague or poorly defined complaint. It is well defined by the Canadian Clinical Case Definition.
Canadian Expert Consensus Panel Clinical Case Definition for ME/CFS
The Diagnostic Criteria for ME/CFS from the Canadian Consensus Document
The Myalgic Encephalomyelitis Society of America states, "The defining characteristic is exercise intolerance, post-exertional muscle weakness, generalized weakness, faintness, and pain; and post-exertional relapsing of symptoms."
The Society suggests specific descriptive terminology instead of the vague word "fatigue":
"There are more specific ways of describing the symptoms, such as dramatic loss of muscle power after exercise, delayed recovery of muscle function, orthostatic faintness, cardiac output problems, and other more specific terminology than 'fatigue.'...The defining characteristics of M.E./CFS can be easily outlined without reference to 'fatigue.' What all patients must have...is an abnormal muscle metabolism--a delayed or impaired recovery of muscle function after exercise, which patients experience as paralytic muscle weakness and pain, not 'fatigue.'"
The enormous amount of medical research already done on ME/CFS includes studies on "cardiac disease, circulatory disease, dysautonomia and endocrine disorders, abnormal muscle metabolism, mitochondrial disease, immune disease, viral and bacterial disease, orthostatic problems, cardiac output problems, etc."
Founding
Principles and M.E. Society Definitional
Framework--Discussion
by Maryann Spurgin, PhD, Myalgic Encephalomyelitis Society of America
Ten
Discoveries About the Biology of CFS
by Dr. Anthony Komaroff, MD
Some
of the Abnormalities that Have Been Demonstrated in ME/CFS
by Eileen Marshall and Margaret Williams, March 31, 2006
Dr. Paul Cheney, MD, believes that CFS progresses through three phases: a post-viral or otherwise induced RNase L activity (an immune activation); xenobiotic toxicity from damage to enzyme systems; and hypothalamic injury and genetic changes.
The
Three Phases of CFS: Dr. Paul Cheney's Theory
by Carol Sieverling
Lecture
by Paul Cheney, MD, PhD, February 1999
Notes by Sue Bailey
Post-Exertional Malaise
Post-exertional malaise and/or fatigue is described in the Canadian Case Definition (see above). "There is an inappropriate loss of physical and mental stamina, rapid muscular and cognitive fatiguability, post-exertional malaise and/or fatigue and/or pain and a tendency for other associated symptoms within the patient's cluster of symptoms to worsen. There is a pathologically slow recovery period--usually 24 hours or longer."
The phenomenon is described as "muscle fatiguability" in the Ramsay Definition developed by Dr. Melvin Ramsay in the United Kingdom. "Even after a minor degree of physical exercise, three or more days may elapse before full muscle power is restored."
And, to repeat from the Founding Principles by Maryann Spurgin of the Myalgic Encephalomyelitis Society of America, post-exertional malaise is "a delayed or impaired recovery of muscle function after exercise, which patients experience as paralytic muscle weakness and pain."
The following is a referenced description of the physical effects of exercise on ME/CFS patients, following the Canadian Case Definition.
Post-Exertional
Malaise/Fatigue and Exercise
by Marjorie van de Sande, Quest #60, June/July 2003
Cardiac Insufficiency
Abnormal
Impedance Cardiography Predicts Symptom Severity in Chronic Fatigue
Syndrome
by Arnold Peckerman, PhD, et al, The American Journal of
the Medical Sciences, August 2003
The implications of this study are discussed by Dr. Paul Cheney, MD, in Carol Sieverling's article below. The study demonstrated that cardiac output measures the level of disability in CFS and correlates to post-exertional fatigue. Dr. Cheney notes that the patients in the study were not as ill as his own patients.
Carol Sieverling's article is based on transcripts and tapes of conversations with Dr. Cheney on cardiac insufficiency in CFS. In CFS, Dr. Cheney says, cardiac output is lower than normal. When a CFS patient stands up, the further drop in cardiac output puts the patient into borderline organ failure. To maintain blood pressure, the patient's body sacrifices the microcirculation of the blood to body tissues (tissue perfusion). The progression of inadequate tissue perfusion throughout body tissues parallels the progression of CFS.
He cites the similarities between CFS and cardiomyopathy; and he discusses the nitric oxide / peroxynitrite cycle (see also Neural Sensitization Protocol) and treatments.
The
Heart of the Matter: CFS and Cardiac Issues
by Carol Sieverling
The following article discusses Dr. A. Martin Lerner, who diagnoses CFS through cardiac abnormalities, as well as Dr. Cheney. It contains a large bibliography with links.
Cardiac
Insufficiency Hypothesis
Myalgic Encephalomyelitis Society of America
"According to Cheney, aerobic exercise may kill the patient with (ME)CFS." The following article by Margaret Williams includes notes from a seminar by Dr. Cheney that reviews the serious cardiac dysfunction, structural cardiac problems, and risk of heart failure in CFS patients.
Klimas,
Wessely, and NICE: Redefining CBT
by Margaret Williams, November 10, 2006
Mitochondrial Dysfunction
Dr. Sarah Myhill, MD states, "Chronic fatigue syndrome is the symptom caused by mitochondrial failure." The mitochondrion is the structure in a biological cell that supplies energy to the cell. Mitochondrial dysfunction can affect every cell of the body, including the cells of the heart. (See Mitochondrial Dysfunction)
CFS
- The Central Cause: Mitochondrial Failure
By Dr. Sarah Myhill, MD
Nitric Oxide / Peroxynitrite Cycle
The ultimate source of the mitochondrial dysfunction may be the upregulation of the nitric oxide / peroxynitrite cycle, according to the theory developed by Dr. Martin Pall, PhD. (See Neural Sensitization Protocol)
Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome as a NO/ONOO- Cycle Disease
by Martin L. Pall, PhD
Treatment Experts
Dr.
Paul R. Cheney
by CFS & FM Support Group of
DFW
Research Approaches
Chronic
Fatigue Syndrome Research
by Cort Johnson, Phoenix Rising
Q&A
Session With Cort Johnson, Phoenix Rising Founder & ME/CFS/FM
Sleuth
ProHealth.com, March 21, 2008
Definition Wars
Unfortunately, the case definition developed by the CDC, which ignored the previous textbook definition of the existing disorder of Myalgic Encephalomyelitis, has served only to obfuscate and confuse. The Discussion in the CDC's Complete Text of Revised Case Definition actually states, "We dropped all physical signs from our inclusion criteria." Consequently, as Maryann Spurgin writes in the Founding Principles above, "These criteria...are too broad to define any disease."
Comparison
of the Canadian Consensus Document with the CDC's Case Definition
by Mary Schweitzer, PhD
A
Medical Morass?
by Margaret Williams
By using vague, non-specific criteria, the CDC is able to incorrectly maintain that there are no tests or treatments for ME/CFS. Mary Schweitzer describes the consequences of this stand and argues persuasively and logically for the use of tests and treatments.
Presentation
to the Chronic Fatigue Syndrome Advisory Committee, U.S. Dept. of
Health and Human Services
by Mary M. Schweitzer, PhD
Incredibly, the CDC is promoting a new empirical definition, which abandons all attempts at diagnosis and instead administers the MOS 36-item short-form health survey, the twenty-item Multidimensional Fatigue Inventory, and the nineteen-symptom Symptom Inventory. Unlike the Canadian Case Definition referenced above, the empirical definition is based upon what are essentially short psychological tests. It promises only further obfuscation, confusion, and the distortion of medical research results.
"Hitting
a
Moving Target":The Prevalence / Definition Issue
Phoenix Rising newsletter, July/August 2007
by Cort Johnson, Phoenix Rising
An
Interview With Dr. Leonard Jason on the New Prevalence Estimates and
the Empirical Definition for CFS
by Cort Johnson, Phoenix Rising
Whither
Postexertional Fatigue?
by Cort Johnson, Phoenix Rising
Evaluating
the Centers for Disease Control's Empirical Chronic Fatigue
Syndrome Case Definition
by Leonard A. Jason, Ph.D, et al., Journal of Disability
Policy Studies Online, October 21, 2008
Links
Myalgic
Encephalomyelitis Society of America
"The M.E. Society of America is an organization that seeks to promote
understanding of the disease known as myalgic encephalomyelitis
(ME/CFS), a multi-system disease adversely affecting the cellular
mitochondria and the heart, brain, neuroendocrine, immune, and
circulatory systems....The M.E. Society of America Web site features
research and advocacy issues pertaining to ME and ME/CFS as it is
defined by the Canadian Clinical Case Definition and the 1988 Holmes et
al. case definition for CFS, and does not represent patients with
so-called "CFS" as it is currently defined by the U.S. Centers for
Disease Control and Prevention."
Phoenix
Rising
"A guide to Chronic Fatigue Syndrome."
ProHealth
"A range of tools for proactive health management at your fingertips:
comprehensive nutritional support for any number of health concerns,
updates on the latest medical news, chat rooms, message boards and
support communities with thousands sharing information, advice and
treatment experiences."
The ME and CFS Information Page
National
ME / FM Action Network
"The National ME/FM Action Network
is a Canadian, registered, non-profit organization dedicated to
advancing the recognition and understanding of Myalgic
Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia
Syndrome (FMS) through education, advocacy, support, and research."
ME Action
UK
"Our aims are to help and inform those looking for all the available
facts surrounding the issues relevant to Myalgic Encephalomyelitis."