A panel of the American Institute of Medicine ( commissioned by the US Department of Health and Human Services ) released a report advising that the complicated illness that has been called chronic fatigue syndrome (CFS) or myalgic encephalitis (ME) has a new definition and new name : systemic exertion intolerance disease ( SEID).  The disease has long defied classification, because the symptoms vary greatly in those who are affected by it. Evidence suggests a population prevalence of at least 0.2 - 0.4%

The new definition is based on the main symptoms, marked fatigue ( impairing day-to-day functions) of at least six months, total exhaustion after even minor physical or mental exertion, unrefreshing sleep and cognitive impairment or worsening of symptoms upon standing. The report aims to simplify the diagnostic criteria, improve understanding of the progression of the disease , finding treatments and encourage further research, particularly into finding markers in blood that could be used for diagnosis and to measure treatment outcomes.

Research has shown that many physicians and doctors are sceptical about the existence of CFS and most do not know how to diagnose it. More specific criteria should address that problem. Less than half medical texts and less than a third of medical school curricula contain any information regarding the disease. The IOM report that the lack of knowledge results in delayed diagnoses and inappropriate management of patient's symptoms. " Misconceptions or dismissive attitudes on the part of health care providers make the path to diagnosis long and frustrating for many patients. The committee stresses that health care providers should acknowledge CFS/ME as a serious illness that requires timely diagnosis and appropriate care."

The cause remains unknown for the condition, although some cases symptoms have been triggered by an infection. The symptoms can be treated, even though a cure does not yet exist.  There are a number of sub-types, so symptoms and treatments affect people differently. Currently there is no single test to diagnose CFS. Diagnosis is made by exclusion after a person has had the symptoms for at least six months. The results of routine medical tests will often be normal. Treatment needs to take into account an individuals needs and preferences, and usually involves managing the physical and emotional impact of the symptoms, improving the physical, emotional and cognitive capacity.

There is no known pharmacological treatment or cure. There are some medications that are not advised and can cause harm,  such as thyroxine, dexamphetamine, glucocorticoids, mineralocorticoids, antiviral agents and methylphenidate. Some medications are used to improve symptoms such as sleep disturbance, chronic pain or associated depressed mood .Exclusion diets are not generally recommended for managing CFS/ME, many people find them helpful in managing symptoms, particularly linked to bowel problems, ( some exclusion diet require keeping checks on some nutrients that may not be  available in the diet). There is no evidence of effective complementary therapies, but some people find them helpful. Similarly there is no evidence of benefit from co-enzyme Q10, magnesium, NADH or multivitamins and minerals. Those who do use supplements should not exceed the safe levels recommended by the Food Standards Agency.

Strategies for managing CFS/ME should not involve prolonged or complete rest in response to an increase in symptoms or an imposed rigid schedule of exercise and rest. 

The choice of programme, the components and progressions should be reviewed regularly and goals and approaches altered as necessary.

JAMA 2015:online 10 Feb

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