In 2018, the Centers for Disease Control and Prevention (CDC) announced it was soliciting bids to create evidence-based treatment guidelines for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). In 2019, the CDC announced a contract with the Pacific Northwest Evidence-Based Practice Center (EPC). The first draft of this work, a Draft Systematic Evidence Review, was shared with the public in 2021 for a public comment review period.
This report is critical because it will inform the final evidence-based CDC guidelines for management practices for patients with ME/CFS. Solve submitted public comments strongly recommending against the adoption of the review — comments that the CDC responded to in January. Solve M.E.’s comments raised strong concerns about the inclusion of cognitive behavioral therapy (CBT) and graded exercise therapy (GET) and whether the inclusion of this weak evidence could cause harm.
Unfortunately, the CDC has determined that there is not enough evidence to formulate the recommended guidelines, and they will instead publish a literature review. Fortunately, the CDC report will help advocates make the case for clinical trials before Congress. This will be followed by additional trials with the hope of eventually being able to conduct a full systematic review.
While we are disappointed by this outcome, we are encouraged that the CDC took the time to reflect on our comments and to respond in a way that not only makes it clear that we need more research in this area, but also directly acknowledges the potential harm that could be caused by a misuse of the information in the articles that were selected for review. We believe that this clarity from the CDC will allow us to advocate more effectively moving forward.
Read the CDC comments here.