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CFSAC: Current News in ME/CFS Federal Advocacy

ME/CFS advocacy groups play a significant role in educating wider community and government groups about ME/CFS. One such organization, the Chronic Fatigue Syndrome Advisory Committee (CFSAC), operates as an independent group providing formal recommendations on ME/CFS-related issues to The Secretary of Health and Human Services at the federal level of the United States government.

CFSAC’s most recent meeting, held on June 20 and 21, partially focused on strategies for more effectively teaching medical providers about ME/CFS.  In this meeting, Dr. Bateman, as the current chair of the Medical Education work group, presented five recommendations for a formal vote of the full committee.

The recommendations are as follows: 

  • The National Center for Health Statistics (NCHS) work with ME/CFS experts and advocates to reclassify ME/CFS ICD-10 CM codes, which affect both billing and illness surveillance, and that the NCHS adds this discussion to their September agenda.
  • The CDC website clarify how medical providers should use the more accurate ICD-10 diagnostic code G93.3 (benign encephalomyelitis or post viral fatigue) instead of the default ICD-10 diagnostic code R53.82 (chronic fatigue, unspecified) when coding for ME/CFS.
  • All federal agencies providing information about ME/CFS should include the above ICD-10 coding clarification.
  • CFSAC strongly endorses the establishment of an ME/CFS Project ECHO or its equivalent, which connects medical providers with expert guidance on diagnosing and treating ME/CFS.
  • The relevant Health and Human Services agencies help provide information about funding to CFSAC and assist with promotion of an Project ECHO devoted to ME/CFS, should one be established at an academic center.

Each recommendation was voted on and unanimously accepted.

Accordingly, these recommendations are now incorporated into CFSAC’s official recommendations to the United States government via the Assistant Secretary for Health.

The CFSAC recommendations are significant not only for federal advocacy for ME/CFS medical education, but also to the Bateman Horne Center specifically. Now that the five recommendations are part of the official agenda of the CFSAC, the Bateman Horne Center in partnership with the University of Utah, is in a better position to develop Project ECHO as a national resource for the ME/CFS community. This, in turn, widens our capabilities to share research, relief, and resources with all who care for those who suffer from ME/CFS.

The transcript of this section of the CFSAC meeting can be found on the official CFSAC website (relevant discussion begins approximately three quarters of the way down the page), along with the audio recording (relevant discussion begins at 5:07:30).

Learn more about Chronic Fatigue Syndrome Advisory Committee at the links below:

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