In the USA the Institute of Medicine (IOM) are recommending a change of name for ME/CFS to SEID or systemic exertion intolerance disease. It is controversial, as expected, but the advisory panel recognise ME/CFS as “a legitimate, serious and complex systemic disease that frequently and dramatically limits the activities of affected individuals.”

They also recognise that ME/CFS is a physical disorder, not a psychological illness.

 

“Diagnosis of ME/CFS requires that a patient have the following three core symptoms:

 

• A substantial reduction or impairment in the ability to engage in pre-illness levels of activities that persists for more than six months and is accompanied by fatigue—which is often profound—of new or definite onset, not the result of ongoing excessive exertion and not substantially alleviated by rest
• The worsening of patients’ symptoms after any type of exertion—such as physical, cognitive, or emotional stress—known as post-exertional malaise
• Unrefreshing sleep

At least one of the two following manifestations is also required:

 

• Cognitive impairment
• The inability to remain upright with symptoms that improve when lying down—known as orthostatic intolerance

These symptoms should persist for at least six months and be present at least half the time with moderate, substantial, or severe intensity to distinguish ME/CFS from other diseases”.

More here at the IOM website.

 

Why is a new name for ME/CFS needed?

The renaming is important because:

“• Several studies have shown that the term “chronic fatigue syndrome” affects patients’ perceptions of their illness as well as the reactions of others, including medical personnel, family members, and colleagues. This label can trivialize the seriousness of the condition and promote misunderstanding of the illness.

• The term “myalgic encephalomyelitis” is not appropriate because there is a lack of evidence for encephalmyelitis (brain inflammation) in patients with this disease, and myalgia (muscle pain) is not a core symptom of the disease.
• The Institute of Medicine (IOM) committee recommends the name systemic exertion intolerance disease (SEID) for this disease.

This new name captures a central characteristic of this disease— the fact that exertion of any sort (physical, cognitive, or emotional)—can adversely affect patients in many organ systems and in many aspects of their lives. To learn more, and to access the IOM committee’s proposed diagnostic criteria for ME/CFS, visit the IOM website.”

“Diagnosing ME/CFS often is a challenge, and seeking and receiving a diagnosis can be frustrating due to the skepticism of health care providers about these patients and the serious nature of their disease”

Hopefully the new definitions will help with diagnosis and end scepticism of doctors and the public (I know what you mean, I am exhausted too…)

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