We’re Taking the CDC’s Draft Review of ME/CFS Diagnosis and Treatment to Congress

In 2018, the Centers for Disease Control (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 draft of this work, a Draft Systematic Evidence Review, was shared with the public for the first time in the form of a public comment review period, which closed this week.

The CDC has opened up this comment period to “inform the final report” and seek “data and information, including reports and manuscripts that are pending publications or are not available through indexed bibliographic databases.” Currently, there are no federal guidelines for the management of ME/CFS. This report and this public comment period are critical because they will inform the final CDC guidelines for management practices for patients with ME/CFS.

Read the Pacific Northwest EPC draft report in its entirety here.

Solve M.E. Comments Highlight Failure to Achieve Stated Goals

Solve M.E. evaluated if the report serves its purpose. We asked:

  1. Did the CDC accomplish the goal it published?
  2. Does this effort comply with Congressional intent?
  3. Did this effort contribute to the field?

Our answers are: no, no, and no.

Solve M.E. Public Comment Highlights:

  • Solve M.E. strongly recommends against the adoption of this review in any format
  • The review does not meet congressional intentions to “address medical misinformation and stigma,” “resolve case definition issues,” or “work with disease experts and patients”
  • Solve M.E. joins others who criticize the applicability of the findings, ineffectiveness of the review, failure to address harmful evidence, and failure to address bias
  • Solve M.E. encourages the utilization and incorporation of new data related to SARS-CoV-2 and Long COVID
  • CDC does not meet its own goals of publishing evidence-based treatment guidelines
  • Solve M.E. makes recommendations to improve patient input and raises concerns at the lack of transparency in selecting contractors and contractor’s review process

Read our full comments on the review here.

 

Get involved! Tell Congress That CDC Must Do Better

In a recent public comment period, Solve M.E. criticized the CDC for failing to meet the guidance of Congress. A recent, potentially damaging, draft review took two years of CDC resources but doesn’t address any of the intentions published by Congress. Congress needs to know that CDC failing to meet its instructions to:

  • “collaborate with disease experts”
  • “resolve the case definition issues”
  • “counter medical misinformation and stigma”

Send a message to your members of Congress today and ask them to ensure CDC is meeting its commitments to Congress and all Americans touched by ME/CFS.

Take action now!