CDC Launches New ME/CFS Guidance for Clinicians

Miriam E. Tucker

July 13, 2018

The Centers for Disease Control and Prevention (CDC) has posted extensive content on the agency website aimed at helping healthcare providers diagnose and care for patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). 

The multipage site reviews the presentation and clinical course of the illness, which was previously called "chronic fatigue syndrome" but is now known as ME/CFS. The site also provides guidance on diagnosis, clinical care, and other aspects of the "complex, chronic, debilitating disease."

The update was prompted by the landmark evidence-based 2015 Institute of Medicine (IOM; now the National Academy of Medicine) report "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness," Elizabeth Unger, PhD, MD, chief of the CDC's Chronic Viral Diseases Branch in Atlanta, Georgia, told Medscape Medical News.

"CDC recognizes and has established that this is an illness physicians need to diagnose, and they can do so by following the recommendations of the IOM. It is a complex illness, but the steps to making the diagnosis are clear, can be followed, and each patient needs to be approached very individually," Unger said.

And, she added, "there are things that can be done to help patients with this illness, even if there aren't treatments that can cure it."

Although the information may be useful for all healthcare providers, Unger said primary care clinicians are the main focus. "We have tried to target our information to primary care because that's the entry point for most patients. Having a negative first encounter can dissuade patients from ever going back. We know from a lot of population-based surveys that a lot of patients have just given up and don't go at all," Unger said.

Asked to comment, ME/CFS clinical specialist Lucinda Bateman, MD, called the CDC site "a tremendous step forward," adding: "They've pushed the envelope really well, I think, and they've also been willing to link to other resources."  

Bateman, who heads the Bateman Horne Center in Salt Lake City, Utah, has recently organized a coalition of clinicians that held a summit  earlier this year and is now developing detailed ME/CFS management guidelines based in large part on expert clinical experience, given the current dearth of data.

She said she's heartened that the new CDC content reflects a more positive attitude about ME/CFS than the agency has put forth in the past. "They've really made an effort to send a different message to physicians…The new message is, use your intuition, use your good judgment, take care of your patient, and here are [some tools]. They really have the spirit of what we're trying to do in terms of diagnosis and care."

The Diagnosis: What ME/CFS Is, and What It Isn't

The introductory page of the section summarizes the IOM definition, including the hallmark feature of worsening symptoms after physical, mental, or emotional effort, a manifestation known as "postexertional malaise (PEM)."

Also key to the diagnosis are reduced ability to perform preillness activities lasting more than 6 months, accompanied by profound fatigue that is not improved with rest and by unrefreshing sleep. Other common manifestations include orthostatic intolerance, cognitive impairment, and pain.

Importantly, the information also clearly differentiates ME/CFS from depression, stating "As can be observed in people with other long-term chronic illnesses, secondary psychological symptoms such as depression and anxiety may also be present in some patients with ME/CFS." 

Unger noted, "We also provide information in the pages that depression is not the illness, that it's a comorbidity that occurs. We specifically state that this is a biological illness that needs to be identified and cared for."

The section on diagnosis also includes a proposed algorithmic approach for both adults and children, differential diagnosis, comorbid conditions, and evaluation recommendations, including suggested laboratory tests (although routine test results often fall within normal ranges).

Another page addresses some of the challenges to diagnosing ME/CFS, including the lack of a specific lab test or biomarker, the overlap of symptoms with other conditions, the heterogeneity and unpredictability of the illness, and the fact that patients who manage to keep office appointments may not appear to be ill. 

Bateman commented, "The diagnosis is based on the presentation of illness, not a diagnostic study…It's addressing the symptoms of your patient and doing a diagnostic workup."

Clinical Care: Help Patients Manage Symptoms

Despite the lack of approved targeted treatments for ME/CFS, the section on clinical care provides extensive information for addressing patients' symptoms and helping them cope with the illness.

The subsection "Treating the Most Disruptive Symptoms First and Preventing Worsening of Symptoms" provides important information related to the hallmark PEM symptom: Patients need to determine their individual limits for mental and physical activity, a practice known as "pacing," or staying within the "energy envelope."

An important corollary to that — and in contrast to previous advice — is that exercise must be approached extremely carefully.

"While vigorous aerobic exercise can be beneficial for many chronic illnesses, patients with ME/CFS do not tolerate such exercise routines. Standard exercise recommendations for healthy people can be harmful for patients with ME/CFS," the section reads. "However, it is important that patients with ME/CFS maintain activities that they can tolerate, since deconditioning is also harmful to patients."

Indeed, Unger noted, "Exercise is a really complicated issue in ME/CFS. We took great care to try to be as clear as possible about the damage that can be done with just recommending exercise. At the same time, we want to encourage patients to maintain the exercise levels that they can tolerate…It's a very individualistic thing and there's no hard and fast rule…Patients have said they learn to listen to their bodies."

The same subsection also addresses approaches to the other key symptoms of orthostatic intolerance, sleep problems, pain, memory/concentration problems, and depression/anxiety.

Also included under the main "clinical care" heading is advice about monitoring patients' use of various medicines and supplements and addressing severely ill patients who may not be able to make it to office visits.

Unger acknowledged that the complexity of the illness makes it difficult to approach comprehensively in a single primary care visit. However, she said, steps outlined in the pages could be carried out in a series of office visits or via collaboration with medical specialists and other healthcare professionals, such as physical therapists.         

Unger is a CDC employee and has no disclosures. Bateman served on the IOM report writing panel and has received funding from Cortene Inc for research on a potential new treatment for ME/CFS.

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