The committee formed by the Institute of Medicine in the USA to examine diagnostic criteria in ME/CFS released its 280-page report this afternoon (free download here).

Its primary message is that the disease is serious, chronic, complex and multisystem, and that it frequently and dramatically limits the activities of affected patients. Accordingly, the committee has recommended:

  • New diagnostic criteria, which it says are more focused on the core symptoms than many other definitions.
  • A new name for the disorder – ‘Systemic Exertion Intolerance Disease’ (SEID). The committee points out that the name ‘CFS’ perpetuates misunderstanding of the illness and dismissive attitudes from health care providers and the public, and it believes that “SEID captures the central characteristic of the disease – that exertion of any sort can adversely affect several organ systems and many aspects of patients’ lives, often seriously and for long periods”.
  • A new code for the disorder in the International Classification of Diseases (ICD-10), not linked with ‘chronic fatigue’ or ‘neurasthenia’ as at present.
  • An official toolkit appropriate for screening and diagnosing patients, that could be developed centrally by the US Department of Health and Human Services.

As president of the Institute of Medicine Victor Dzau says, “The diagnostic criteria offered in this report are intended to promote prompt diagnosis for patients and enhance treatment, as well as improve public understanding of the disease.” The committee recognises, however, that new criteria will only improve diagnosis and care if healthcare providers actually USE them. This will be the big challenge for the future.

Further Reading

Beyond myalgic encephalomyelitis/chronic fatigue syndrome: redefining an illness (full report). Institute of Medicine 2015.

Press release: Chronic fatigue syndrome/myalgic encephalomyelitis is a legitimate disease that needs proper diagnosis and treatment. Institute of Medicine press release 2015 Feb 10.

Viewpoint: Beyond myalgic encephalomyelitis/chronic fatigue syndrome: an IOM report on redefining an illness. Journal of the American Medical Association, 2015 Feb 10.

Chronic Fatigue Syndrome gets a new name’, New York Times blogs, report by David Tuller, 2015 Feb 10.