About ME/CFS

Etel FallenPatient Marissa

Myalgic encephalomyelitis/Chronic fatigue syndrome (ME/CFS) is a chronic, debilitating multi-system illness affecting the neurological, endocrine, and immune systems. It is characterized by lower natural killer cells, low V02 max, abnormal spinal fluid, brain lesions, severe pain, and severe sleep dysfunction. It affects more than a million Americans and 20 million people worldwide. Many, if not most, patients become disabled and unable to work. Economic estimates have suggested that disease causes up to $24 billion in annual costs to the U.S. economy (by comparison, NASA, the Department of Commerce, the Department of State, and the Department of Energy each have annual budgets less than $24 billion) and a $20,000 annual cost to each patient through lost wages and medical bills (Jason, et al.). However, ME/CFS receives little instruction in medical schools.

Nancy Klimas, MD, an immunologist who has spent much of her career caring for patients with AIDS and ME/CFS, has said that the level of disability in ME/CFS is equal to that of a late-stage AIDS patient or someone undergoing chemotherapy.

Myalgic encephalomyelitis (ME) is the international scientific name for the disease, officially classified by the World Health Organization in 1969. Myalgic refers to “muscle pains” whileencephalomyelitis refers to an “inflammation of the brain and nervous system.” The most famous outbreak of ME occurred at the Royal Free Hospital in 1955. However, ME and CFS (or ME/CFS) do not usually occur in outbreak form.

Chronic fatigue syndrome (CFS) is a term of American origin stemming from a series of events beginning with an outbreak of a mystery disease near Lake Tahoe, Nevada in 1984. The disease would eventually become known as “chronic Epstein-Barr” or “chronic mono” before getting later re-named chronic fatigue syndrome by the Centers for Disease Control and Prevention in 1987. In 1994, the Fukuda definition became the most widely used definition of the disease in the U.S., suggesting that diagnosis was appropriate if a patient exhibited six months of severe fatigue without a known origin.

In 2003, a group of international scientists convened to redefine the disease with more appropriate precision. Their definition, the so-called “Canadian Consensus Criteria,” is considered particularly notable for uniting ME and CFS into a single diagnosis: ME/CFS. The Canadian criteria were also an advancement for their inclusion of the trademark symptompost-exertional malaise, often described as severe exercise intolerance. A simple action such as climbing a set of stairs might cause a patient to be bedridden for weeks. Post-exertional malaise is perhaps the most important symptom differentiating ME/CFS from other less severe fatiguing illnesses.

Much of the lack of progress and lack of interest in the disease in the medical community stems from the vague and trivial name “chronic fatigue syndrome” as well as the vague definition used by the CDC, suggesting the CFS diagnosis is a diagnosis of exclusion. Additionally, there has been a bias toward ineffectual research into psychiatric or psychosomatic etiology of the disease, as definitions such as the Oxford Criteria have confused the psychological fatigue of depression for the bio-physical fatigue of ME/CFS. This is particularly prevalent in the U.K. and Europe.

Progress is occurring in efforts to bring the Canadian Consensus Criteria into wider use in the U.S. and abroad. As recently as September 2013, thirty-five of the top researchers in the world signed a letter to the U.S. Department of Health and Human Services announcing they had achieved unanimous consensus of the definition of the disease and that the CCC should come into wide use across U.S. federal health agencies.

Other important recent signs of hope have included:

–the entry into the ME/CFS field of renowned virus hunter Ian Lipkin of Columbia University;
–major steps by the FDA working to move the approval process forward for the drug Ampligen, one of the few drugs with real efficacy in large numbers of patients;
–entry into the field of new researchers following the announcement of a link to the retrovirus XMRV (the link eventually proved false but the new public and scientific interest stayed true);
–the increased use of molecular biology to identify abnormalities in gene expression in specific sub-groups of the disease;
–the emerging use of bio-informatics platforms at institutions like the Open Medicine Institute

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