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What is Myalgic Encephalomyelitis & Chronic Fatigue Syndrome?


Chronic Fatigue Syndrome & Myalgic Encephalomyelitis Definition The disease known as chronic fatigue syndrome (CFS) in the United States has historically been called myalgic encephalomyelitis (ME) abroad. The acronym ME/CFS is currently used by researchers to reflect the difference in nomenclature. Even though the case definitions of the two illnesses do not match, specialists in the US who treat chronic fatigue syndrome acknowledge that the diseases are fundamentally the same.

The primary characteristics of the illness are a profound, unrelenting loss of energy that is not relieved by rest; post-exertional malaise, which is a worsening of all symptoms following minimal mental or physical exertion; sleep disorder; cognitive impairment resulting in slowed processing of information, reduced focus and attention, and pain.

Chronic Fatigue Syndrome & ME is a "multi-system disease," that is, it affects several systems in your body simultaneously: the immune system, the nervous system, and the endocrine system. Because cells of all three systems share the same receptors, any illness that affects one of these systems will affect the other two.

 

Abnormalities


There have been thousands of research papers on ME/CFS documenting multiple physiological abnormalities in patients with ME/CFS. The most consistent among these abnormalities is immune system dysfunction, notably reduced natural killer cell (NK) function.

Natural killer cells are part of the innate immune system, which means they don't need prior contact with pathogens in order to form antibodies. (That is why they are "natural" killer cells.) NK cells provide a rapid response to viral infections and tumor cells. Reduced NK function indicates, among other things, that the immune system is unable to clear viruses.

Reduced NK function has been one of the most consistent immunological findings among people with ME/CFS. In fact, it is so consistent that the Japanese originally called the disease LINKS, which stood for Low Natural Killer Cell Syndrome.

One of the earliest immune system studies was performed in 1994 by Barker et al. They found that NK cell dysfunction was a "common manifestation of CFS." Further studies led by Ogawa, and Ojo Amaize confirmed that NK cells were not properly activated, and, when they were, had low cytotoxicity. Ojo Amaize et al. concluded that low cytotoxicity of NK cells was consistent with flu-like symptoms, and, perhaps, the reactivation of viruses. Not every study has found a reduction of NK function, which has led to a debate in the research community as to whether ME/CFS should be classified an immune disease.

The most recent of the NK studies, conducted by Brenu et al., cleared up some of the confusion. The immune system changes minute by minute. As a consequence, studies that take a "snapshot" of immune markers through a single blood draw will have variable results. Brenu's group looked at immune markers over a period of a year. The study demonstrated that NK (natural killer) cytotoxic activity remained consistently decreased in ME/CFS patients during the course of the disease.

Brenu's group also found consistent pro-inflammatory cytokines (immune system chemicals). The persistent upregulation of pro-inflammatory cytokines is a marker of chronic inflammation and persistent viral infection in many disease states. In 1990 Nancy Klimas was one of the first researchers to find a distinct pattern of cytokines in ME/CFS patients. More recently, Maes et al. found that inflammatory cytokines and immune markers were not only elevated, but were associated with specific symptoms, including fatigue, sadness, autonomic symptoms, and a flu-like malaise, concentration difficulties, failing memory, and a subjective experience of infection.

Other immune irregularities, such as antibodies to cardiolipin, seem to indicate that an autoimmune process is involved (Hokama). Anticardiolipin antibodies (ACA) are found in autoimmune diseases such as lupus, rheumatoid arthritis, autoimmune hepatitis, and scleroderma. Other indicators of an autoimmune process are the presence of antinuclear antibodies (ANA) in about one-third of ME/CFS patients, as well as antiphospholipid antibodies (Berg). The most telling evidence that ME/CFS is fundamentally an immune disorder comes from the fact that it is chronic. Any chronic illness points to an immune system that is not operating efficiently.

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How Many People Have ME/CFS?


It is difficult to estimate how many people suffer from ME/CFS when there are so many case definitions. Using a very broad case definition, such as the Oxford Case Definition, which only requires six months of fatigue, would result in enormously inflated numbers, as it could capture people with depression, deconditioning, and rare diseases, such as Behçet's, Ehlers-Danlos, Primary Immune Deficiency, early MS, rare forms of leukemia, and so on.

A narrow case definition, such as the Canadian Consensus Criteria or International Consensus Criteria, would produce more accurate statistics, but these definitions are used almost exclusively by ME/CFS experts, not by government agencies charged with establishing prevalence and incidence. The fact that so few doctors have the expertise to diagnose ME/CFS confounds the problem.

Statistics


In 2003, Reyes et al. published a 4-year study conducted in Wichita, Kansas. The overall prevalence of CFS was 235 per 100,000 persons, which meant 800,000 people in the U.S. had the disease. CFS was more than four times more common among women (373 per 100,000) than among men (83 per 100,000). Only 16 percent had received a diagnosis and medical treatment for their illness.

According to the CDC, there are currently one million people in the U.S. with ME/CFS.

In Great Britain, there are roughly 250,000 people with ME/CFS. One study estimated the minimum prevalence rate of ME/CFS at 0.2%. (Nacul et al.) ME/CFS Australia estimated that there were 180,000 Australians with ME in 2002. That number has since grown.

The 2005 Community Health Survey conducted by Statistics Canada indicated that there were 333,816 Canadians diagnosed with ME/CFS.

In the Netherlands, prevalence may be as high as 3.6% in the working population, which is considerably higher than the US rate. (Huibers et al.) Sweden has also reported a high prevalence rate of 2.6%. (Evengård et al.) There have been very few systematic epidemiological studies conducted in Africa, but one study suggested that the rates might be higher in Nigeria than in the US. (Njoku et al.) The prevalence of CFS in a community population in Japan was 1.0% in 2011, or roughly 300,000 nationwide.

Further Reading


List of brain scan research studies

"CFS - The Central Cause: Mitochondrial Failure." Dr. Sarah Myhill.

"Mitochondrial Dysfunction, Post-Exertional Malaise and CFS/ME." Lucy Dechéne

Ramsay, A. Melvin. "'Epidemic neuromyasthenia' 1955-1978." Postgraduate Medical Journal (November 1978) 54, 718-721

New Mitochondrial Function Analysis Technique to Be Used in ME/CFS Research at U of Liverpool." ProHealth. December 21, 2011

List of epidemiological studies up to the year 2000.

List of epidemiological studies up to the year 2007.

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