This past July, 2018, the U.S. Center for Disease Control and Prevention (CDC) launched new webpages about myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) geared to practitioners. ME advocates, clinicians and researchers had provided feedback about updates to these pages but not all of their recommendations were taken on board. As a result, some sections of the site continue to misinform medical providers and potentially put patients at risk.

As a result, we are urging the CDC to make further changes to its website that make clear the harms of graded exercise; place greater emphasis on the importance of pacing; and more accurately represent severe ME.

(The CDC had previously removed recommendations for graded exercise therapy and cognitive behavioral therapy a year prior in July of 2017.)

I wrote an analysis about the CDC’s new webpages this past July, and the community weighed in about the CDC’s new ME/CFS webpages with 66 comments.

Based on my analysis and community feedback, #MEAction will send to the CDC the following recommended changes to update its ME/CFS webpages. Community-based suggestions to our recommendations are in red ink.

A special thanks to the fleet of patients who have helped by engaging with the CDC for the past few years — or the past few decades. I could not have written this without their feedback and assistance, and we would not be here without them.

Read our Recommended Changes to the CDC’s ME/CFS Webpages: