undiagnosed, often life-altering condition. The committee was able
to redefine the diagnostic criteria for this disease so that they are easy to
understand and apply and capture the essence of the disease's unique symptomatology.
The committee recommends an evidence-based, disinterested
procedure by which these criteria can be refined in the future on the basis
of new research.
well as examining advocacy websites and the Voice of the Patient report,
the committee determined that the name "chronic fatigue syndrome" has
done a disservice to many patients and that the name "myalgic encephalomyelitis"
does not accurately describe the major features of the disease. In
their place, the committee proposes "systemic exertion intolerance disease" as a name that more fully captures the full scope of this disorder."
several reasons, including skepticism of health care providers about the serious nature of ME/CFS and the misconception that it is a psychogenic illness or even a figment of the patient's imagination. Less than one-third of medical schools include ME/CFS-specific information in the curriculum
(Peterson et al., 2013), and only 40 percent of medical textbooks include
information on the disorder (Jason et al., 2010). ME/CFS often is seen as
a diagnosis of exclusion, which also can lead to delays in diagnosis or to
misdiagnosis of a psychological problem (Bayliss et al., 2014; Fossey et al.,
2004; Jason and Richman, 2008). Once diagnosed, patients frequently
complain that their health care providers do not know how to deliver
appropriate care for their condition, and often subject them to treatment
strategies that exacerbate their symptoms.
extracting their findings and using an adapted "GRADE grid" to
record judgments as to whether there was sufficient evidence that
certain symptoms and abnormalities define either ME/CFS or a
particular subtype of the disorder (see Appendix B for the grid
new name for ME/CFS, and operationalizes the new criteria.
complex, multisystem disease that frequently and dramatically limits the
activities of affected patients. In its most severe form, this disease can consume
the lives of those whom it afflicts. It is "real." It is not appropriate to
dismiss these patients by saying, "I am chronically fatigued, too."
chronic fatigue syndrome if diagnostic criteria are met following
an appropriate history, physical examination, and medical work-up.
A new code should be assigned to this disorder in the International
Classification of Diseases, Tenth Edition (ICD-10), that is not linked
to "chronic fatigue" or "neurasthenia."
research on ME/CFS conducted to date. Remarkably little research funding
has been made available to study the etiology, pathophysiology, and
effective treatment of this disease, especially given the number of people
afflicted. Thus, the committee was unable to define subgroups of patients
or even to clearly define the natural history of the disease. More research
Doctors MUST use the available information, even if it's given to them by patients. Paternalistically patting her on the head and saying "don't believe everything you read online" ignores the fact that there is a lot of GOOD information online (including this IOM report). Doctors MUST drop their prejudices about women patients and about internet-based information, in order to give the best care.
value of creating a name that conveys the central elements of this disease, a
practice for which there is much precedent in medicine for disorders whose
etiology or pathophysiology is not yet well understood. After extensive
consideration and mindful of the concerns expressed by patients and their
advocates, the committee recommends that the disorder described in this report be named "systemic exertion intolerance disease" (SEID). "Systemic exertion intolerance" captures the fact that exertion of any sort—physical, cognitive, emotional—can adversely affect these patients in many organ systems and in many aspects of their lives. The committee intends for this name to convey the complexity and severity of this disorder.