Image Credit: THPStock/SHUTTERSTOCK.COM
A report from the Institute of Medicine that gives new diagnostic criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and recommends a new name for the disorder received mixed reviews from rheumatologists and other physicians.1
“Diagnosing ME/CFS often is a challenge … the new diagnostic criteria will make it easier for clinicians to recognize and accurately diagnose patients in a timely manner, as well as allow a large percentage of currently undiagnosed patients to receive appropriate care,” says the chair of the committee that wrote the report, Ellen Wright Clayton, who is the Craig-Weaver Professor of Pediatrics and professor of law at Vanderbilt University.
The committee recommended that physicians diagnose ME/CFS if certain diagnostic criteria are met following an appropriate history, physical examination and medical workup. Diagnosis of ME/CFS would require 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 of new or definite onset;
- The worsening of a patients’ symptoms after any type of exertion, such as physical, cognitive or emotional stress; and
- Unrefreshing sleep.
In addition, the patient must either have cognitive impairment and/or be unable to remain upright, with symptoms that improve when lying down (orthostatic intolerance).
Stuart Kaplan, MD, partner, Rheumatology Consultants LLP, Hewlett, N.Y., and chief, Division of Rheumatology, South Nassau Communities Hospital, Oceanside, N.Y., believes patients will benefit from the new criteria by now being able to prove that they have a serious, potentially debilitating disease. “This will allow them to obtain the benefits and treatments they deserve,” he says. “Having criteria for fibromyalgia has made a tremendous difference for those patients. Often, just telling the patient that you know what they have and showing them how they fit the criteria for a specific disease, alleviates much of the suffering of these patients, many of whom have been told they are crazy or malingering.”
On the other hand, Robert G. Lahita, MD, PhD, FACP, MACR, FRCP, chair of medicine and vice president, Newark Beth Israel Medical Center, and professor of medicine, Rutgers, New Jersey Medical School, says the new criteria are broad and ambiguous. “Cognitive impairment is common to many illnesses, and the inability to remain upright is quite general. Postexertional malaise and unrefreshing sleep are also aspects of chronic rheumatic diseases, such as lupus, fibromyalgia and rheumatoid arthritis. There will be considerable overlap.”
In addition, Dr. Lahita says patients with CFS and fibromyalgia must be differentiated solely on clinical grounds because no biomarkers exist for either condition. “Fibromyalgia has a considerable pain component to it, but patients with this illness often have crossover criteria with CFS,” he says.
Donald Goldenberg, MD, chief of rheumatology, Newton-Wellesley Hospital, and professor of medicine, Tufts University School of Medicine, Newton, Mass., does not see a need for the new diagnostic criteria. “It isn’t substantially different from prior criteria and mistakenly omits the essential criteria that CFS is diagnosed only after all other medical and psychiatric illness that could create the symptoms have been adequately excluded,” he says.
Another problem with the report, according to Dr. Goldenberg, is that it fails to integrate the overwhelming evidence that CFS and fibromyalgia are part of the same spectrum of illness.
“Widespread pain is an important component of CFS,” Dr. Goldenberg says. “This report is focused on isolating CFS and identifying its uniqueness. However, most physicians believe that focusing on the overlap and the spectrum of related illnesses, including fibromyalgia and CFS, is the key to eventually better understanding and therapy.”
Dr. Lahita says patients might benefit from the new diagnostic criteria because they can now accept the fact that their condition is real. “The precipitating and perpetuating factors within the illness need quantification,” he says. “But [because] no therapy for the illness exists, despite many anecdotes and suggested remedies, the diagnosis will offer little to the patient except psychological comfort.”
New Name, New Code
To convey the complexity and severity of ME/CFS, the committee also recommended that the disorder be renamed “Systemic Exertion Intolerance Disease” (SEID). The committee, along with many ME/CFS patients, believe the term chronic fatigue syndrome perpetuates misunderstanding of the illness and fosters a dismissive attitude from healthcare providers and the public. The committee also recommended that the condition be assigned a new code in the International Classification of Diseases, 10th edition.
Dr. Kaplan supports renaming CFS, as well as the new code. “This would greatly enhance its credibility as a true disease and not just a constellation of vague symptoms,” he says. “The term systemic highlights the systemic features of this condition, such as sore throat and lymphadenopathy, and emphasizes that it is not just about feeling tired. The new name also suggests that the entity may be just one of a number of exertional-intolerance diseases, which may also include fibromyalgia.”
On the flip side, Kevin V. Hackshaw, MD, rheumatologist, The Ohio State University Wexner Medical Center, Columbus, Ohio, sees some disadvantages. “There is already a lot of confusion with the frequent back and forth between myalgic encephalomyelitis and CFS,” he says. “Introducing a new term will probably spread the stigmatization to the new term and will do little to add legitimacy to this condition, nor will it relieve stress and anxiety for affected individuals.”
An Action Plan
The committee cautioned that the proposed criteria will not improve patient diagnosis and care unless healthcare providers use them. Therefore, it recommended that the U.S. Department of Health and Human Services develop a toolkit for screening and diagnosing patients with ME/CFS in a wide array of clinical settings.
Dr. Kaplan believes such a toolkit would be valuable. “Most physicians are not very familiar with CFS, and even those who are find the criteria somewhat complex,” he says. “Having a toolkit and algorithm would greatly simplify the diagnosis and management of these patients.”
On the other hand, Dr. Goldenberg says toolkits for syndrome-driven disorders, such as fibromyalgia and CFS, don’t make sense. “As we have done in fibromyalgia, diagnostic guidelines for all common symptom-based illnesses, such as depression, migraine and irritable bowel syndrome, are helpful but very dependent on the clinician’s experience and comfort level in excluding other illnesses.”
More Research Needed
The IOM report also stressed the need for urgent research on ME/CFS, given that between 836,000 and 2.5 million Americans have ME/CFS, and an estimated 84–91% of people with ME/CFS are not diagnosed. Too little is known about the causes, development and progression of the disease, and effective treatment. Future research could lead to findings that refine the diagnostic criteria and understanding of ME/CFS subtypes.
Dr. Lahita agrees that an understanding of CFS is essential. “CFS has ruined many lives and caused many to commit suicide and spend millions on suspect remedies. Patients who have the illness are shunned by many physicians, and they have been stigmatized by family and friends.”
According to Dr. Lahita, the illness does not garner federal money for research efforts, and as a result, patients often enter poor clinical trials and studies where they waste their time and spend needless amounts of money.
Karen Appold is a medical writer in Pennsylvania.
Reference
- Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Board on the Health of Select Populations, Institute of Medicine. Beyond myalgic encephalomyelitis/chronic fatigue syndrome: Redefining an illness. Institute of Medicine. Washington, D.C.: National Academies Press, 2015.
