What’s Missing From the IOM Report About Chronic Fatigue Syndrome (SEID)

One doctor’s take on the Institute of Medicine’s new consensus report.

By Gary Kaplan, D.O.

The Institute of Medicine released their consensus report on myalgic encephalomyelitis/chronic fatigue syndrome, “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness,” on Feb. 10. This report was prepared by the Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in response to a request by multiple agencies, including the Department of Health and Human Services, to examine the evidence base for ME/CFS. This committee was to set new diagnostic criteria that would facilitate timely diagnosis and care, as well as enhance the understanding of this disease among health care providers and the public.

The IOM panel proposed several positive changes, but I believe they fell short on two key issues. Here is a general overview of IOM’s findings, along with my commentary:

1. IOM declares that this disease does exist and is a medical, not psychiatric, condition.

For years, people suffering with ME/CFS have been battling a stigma associated with this condition. Some physicians have even doubted it to even be a legitimate illness. The acknowledgement from the IOM that this is a medical, not psychiatric, condition, as well as a complex, multi-system disease, was an important and necessary acknowledgement that will enable us to move beyond its stigma and provide the necessary support for patients suffering from ME

2. ME/CFS is out, SEID is in – maybe.

The IOM proposed the name Systemic Exertion Intolerance Disease to replace CFS. While I completely agree that a name change is necessary, as many consider CFS to be both stigmatizing and/or trivializing, SEID is not appropriately descriptive. It does not speak to the underlying complex pathophysiology of the disease but remains descriptive only of what is now regarded as the hallmark symptom – post-exertion malaise. The World Health Organization regards CFS as a neurologic disease, and the International Consensus Criteria regards it as an immunological mediated neuro-inflammatory disease with multi-system manifestations. The term Myalgic Encephalomyelitis speaks to the pathophysiology and is accepted worldwide. ME does not carry a negative connotation, and I believe it should have been accepted by the IOM.

3. IOM’s Diagnostic Criteria for SEID.

IOM states that diagnosis requires the following three symptoms:

• A substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social or personal activities that persists for more than six months and is accompanied by fatigue, which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated by rest;
• Post-exertional malaise; and
• Unrefreshing sleep.

At least one of the two following manifestations is also required: cognitive impairment or orthostatic intolerance.

IOM successfully defined the criteria for diagnosis, but I disagree with the mandatory time of six months to make a diagnosis. This is far too long. To insist that a person suffering with this condition wait six months for a diagnosis, especially if they have no other infectious or disease process, is wrong. The IOM acknowledges that nearly a quarter of the approximately 1 million people suffering with this disease are housebound or bedridden. To delay their opportunity to seek specialty help imposes unnecessary suffering. It also denies researchers the opportunity to study this disease in its earliest stages. We should follow the ICC’s example and not have a limit on the length of time someone needs to be suffering with these symptoms before getting a diagnosis.

4. Creation of a new ICD-10 code.

This is another positive step that will help doctors and researchers identify and track the percentage and demographic of the population affected by this disease, treatment success and failure rates, and other details associated with SEID.

So where do we go from here?

What we need now is the commitment of research dollars commensurate with the extent and severity of this disease to enable us to further its study and treatment. To give one a perspective on the current lack of research funding, multiple sclerosis, a devastating disease that affects less than half the estimated number of people suffering from ME/CFS/SEID, will receive approximately $100 million in NIH research dollars this year, while ME/CFS/SEID will receive a mere $5 million.

With the release of reports from NIH P2P and IOM acknowledging the extent and severity of this disease, we need to see a drastic increase in research funds that will not only assist in the creation of several centers of excellence to study and treat this disease, but also further educate the next generation of physicians and researchers. I believe a commitment from HHS/NIH of $150 million in research grants a year is essential to address and find a cure for this devastating disease.

In January I had the opportunity to share my view on the challenges of diagnosing and treating ME/CFS/SEID. I also discussed the recent findings of the NIH Pathways to Prevention conference “Advancing the Research on ME/CFS.”

As first seen on U.S. News & World Report.