Medscape Medical news blog post, by Miriam Tucker, 13 July: CDC Launches New ME/CFS Guidance for Clinicians

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.”

Read the full article for more about diagnosis and clinical care

Read the CDC website

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