Three decades ago, the U.S. government burdened a group of seriously ill patients with a trivializing name — "chronic fatigue syndrome" — and a broad set of criteria that did nothing to distinguish true sufferers of this debilitating disease. Now, the government is trying to do it again, under the guise of helping us, with a new report from the Institute of Medicine, the health arm of the National Academy of Sciences.
This issue is not only important to the 1 million Americans sickened by "myalgic encephalomyelitis," most of whom are homebound or bedbound, but also to U.S. taxpayers. This illness's estimated cost to the national economy is more than $10 billion a year.
Overly broad definitions have led to great confusion and held back research into biomarkers and effective treatments for this disease. Imagine the impact on research results if patients without cancer were included in chemotherapy trials. This inadequacy has resulted in a lack of meaningful studies and no effective treatments to date.
Experts in the disease have produced two sets of criteria based on the most recent research: the Canadian Consensus Criteria (CCC) in 2003 and the International Consensus Criteria (ICC) in 2011. In the ICC, the experts restored our condition's historic name, "myalgic encephalomyelitis (ME)," replacing the belittling moniker "chronic fatigue syndrome."
Despite the wishes of the ME community, and in spite of the updated expert criteria, the Department of Health and Human Services (HHS) negotiated a highly controversial contract with the Institute of Medicine (IOM) to study, rename and redefine this disease. The results were announced Feb. 10.
At first glance, the new IOM report gives the impression that the committee of eight non-experts and seven experts produced a solid clinical definition of this disabling disease. Advocates and patients who welcome the new criteria correctly argue that the committee got it right by including the hallmark defining symptom of post exertional malaise (or collapse). Upon closer inspection, however, there are serious flaws.
MEAdvocacy.org, an organization that represents patients, is concerned about the government’s control in defining this disease. We are concerned that IOM criteria are too concentrated on “fatiguing” symptoms, and omit key neuro-endocrine-immune symptoms. In addition, we believe that the IOM criteria do not call for excluding active diseases with similar symptoms such as multiple sclerosis, lupus and primary psychiatric disease. These omissions can lead to over-diagnosing ME yet again.
The new name, Systemic Exertional Intolerance Disease or SEID, also is causing controversy. It still does not adequately convey the seriousness of the disease, again connoting that we are just lazy.
ME patients have suffered through decades of neglect. We will not agree with another non-specific definition that will set us back for decades more, when we already have a definition created by experts in the 2011 ICC. We at MEAdvocacy.org call for rejection of the IOM report.
Robin Funk is a member of MEAdvocacy.org