SEID Classification Usurping ME Must Be Stopped

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STATING POSITION ON THE ICD 10 PROPOSAL

It has come to MEadvocacy’s attention that a meeting for US ICD-10-CM coding by the Coordination and Maintenance committee took place on Sept. 12, 2018 with a discussion on the topic of changes to chronic fatigue syndrome (CFS) coding. These changes will affect the diagnostic coding for myalgic encephalomyelitis. This topic was not part of the agenda and ME stakeholders only found out about it two weeks later. (see details of the meeting in Gabby Klein’s blog here)

MEadvocacy is reviewing the proposal for placing Systemic Exertion Intolerance Disease (SEID) and Chronic Fatigue Syndrome (CFS) in the same ICD heading under Brain Disorders with myalgic encephalomyelitis.  

Proposal

Change heading of G93.3 to:  “Postviral and related fatigue syndromes”
(Previously Postviral fatigue syndrome)

G93.30 - SEID, unspecified, NOS (Not otherwise specified)

G93.31 - Postviral fatigue syndrome
G93.32 - Myalgic encephalomyelitis
G93.33 - CFS / CFS NOS
G93.39 - Other postviral and related fatigue syndromes

Stakeholders’ comments on this proposal are due by November 13, 2018.

MEadvocacy called Donna Pickett’s office at NCHS on Oct. 4 asking for an extension of time to enable stakeholders who were not properly notified to draft comments but, the reply from her office was that the extension was not possible. MEadvocacy is currently drafting a letter urging for a deferral of this topic until the next C & M meeting scheduled for March 5-6, 2019 [edited Oct 7, 2018 to correct the date].

MEadvocacy’s position has been and remains that myalgic encephalomyelitis (ME) is a distinct disease described and properly defined by ME experts - the latest of which is the International Consensus Criteria (ICC). Additionally, we have and continue to stress that ME is NOT a “fatigue syndrome” and is not synonymous with systemic exertion intolerance disease (SEID) nor chronic fatigue syndrome (CFS).

We expect the stated proposal (introduced as proposal 2 and approved by Lily Chu of the IACFS/ME - via a call-in), combined with CDC’s current IOM/SEID medical education campaign, which is based on the IOM report, will lead doctors to change the diagnostic code for patients who have ME to the new code designated for SEID. Since the medical education provided by the government is only based on the SEID criteria, doctors will not be educated in diagnosing ME - only SEID. This will result in denial of treatments which are specifically geared at ME.

We are deeply concerned that SEID which is not a distinct disease will supercede ME and will in effect erase ME diagnosis altogether. SEID diagnosis will deter doctors from pursuing treatments for neurological, immunological, and cardiac issues. MEadvocacy is preparing a comment for the National Center for Health Statistics.

Comments on the diagnosis proposals presented at the ICD Coordination and Maintenance Committee meeting should be sent to the following email address: nchsicd10CM@cdc.gov attention Donna Pickett.

Deadline for comments is November 13, 2018

 

WHAT YOU CAN DO

  • Send comments regarding concerns about approving these ICD changes to:  Donna Pickett  nchsicd10CM@cdc.gov
  • Watch for our upcoming blog where we will be sharing our comments.
  • You are welcome to use our comments for inspiration or as a template to submit your own comment.