As MEadvocacy reported on October 6, 2018 (read blog here), a meeting took place on September 11 and 12, 2018 by the ICD-10 Coordination and Maintenance (C & M) Committee Meeting of the National Center for Health Statistics (NCHS) - the federal agency under the auspices of Centers for Disease Control and Prevention (CDC) in charge of the ICD-10-CM classifications of diseases in the US.

Although the topic of chronic fatigue syndrome (CFS) did not appear in the meeting agenda, Donna Pickett presented proposals for changes to the ICD-10-CM coding for CFS, myalgic encephalomyelitis (ME), post-viral fatigue syndrome (PVFS) and systemic exertion intolerance disease (SEID).

Because stakeholders did not have prior notice about this meeting and only became aware two weeks later, MEadvocacy advisory committee sent an email on Oct 9, 2018, requesting Donna Pickett defer the topic of proposals of classification changes for “CFS” to the next C & M meeting scheduled for March 5-6, 2019.

We want the ME community to have adequate time to properly review, analyze and provide informed comments on the proposed changes that will impact ME diagnosis, medical care, research, and treatments for decades to come.

EMAIL SENT TO DONNA PICKETT

Dear Donna Pickett,

We are writing to you as the advisory committee for MEadvocacy, the US national patient advocacy organization for myalgic encephalomyelitis, to strongly urge you to defer the topic of the ICD-10-CM proposals for chronic fatigue syndrome (CFS) discussed at the September 12, 2018 Coordination and Maintenance meeting until the next C & M meeting in March 5-6,2019.

The reasons for the need to defer the CFS topic until the next meeting are as follows:

1- The meeting agenda for the C & M meeting of September 11 and 12, 2018 did not contain CFS as a topic for discussion. It was only after the actual meeting took place that the CFS topic was added to the meeting packets.

2- Because there was no prior public notice that the CFS topic would be discussed, organizations and advocates who would have wanted to either attend the meeting in person or call in with questions or comments were not able to do so.

3- The proposals 1 and 2 mentioned when presenting the CFS topic were not provided to the public prior to the meeting to give them a chance to review, analyze and ask questions or provide comments on them.

4- The only CFS and/or ME stakeholder organization to have prior knowledge and involvement with the proposals discussed at the September 12, 2018, CFS presentation appears to be the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME). Other stakeholders organizations and individual advocates were only alerted to the matter two weeks after the meeting took place.

5- CFS proposal 1 and proposal 2 were introduced at the meeting, but only proposal 2 was discussed in depth. It is unclear to stakeholders why proposal 1 seemed to be dismissed and whether both proposals are viable options at this time.

Stakeholder organizations need more time to discuss the proposals with their boards and have an adequate amount of time to analyze and draft informed responses on such an important issue as ICD-10-CM classifications for CFS, ME, PVFS (post viral fatigue syndrome) and SEID (systemic exertion intolerance disease).

Sincerely Yours,

Colleen Steckel, Gabby Klein, Joni Comstock & Tracey Ann-Tempel Smith

MEadvocacy Advisory Committee

Next Steps

MEadvocacy received an email confirming our email was received by Pickett’s office.  We are still awaiting a response from Donna Pickett .

Even though MEadvocacy ’s request for a deferral on this topic is due to the fact that NCHS did not follow normal procedures to notify stakeholders,  - we realize there is no guarantee this deferral will be granted. Therefore, we continue to work on a response with formal comments.  

As we are all volunteers and we all have ME and this endeavor is not a simple response, a deferral is what is truly needed.

What You Can Do

• Send comments regarding concerns about approving these ICD changes to:  
  Donna Pickett  [email protected] by Nov, 13, 2018.
• 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.

References:

Video of Donna Pickett’s presentation - https://youtu.be/BOCxkFsXaj

Packet information from the meeting - https://www.cdc.gov/nchs/data/icd/Topic_packet_Sept_2018_part2.pdf 

Blog: NCHS/CDC Proposal for ICD-10-CM - https://wordpress.com/page/relatingtome.net/6687 

Blog: SEID Classification Usurping ME Must Be Stopped - https://www.meadvocacy.org/seid_classification_usurping_me_must_be_stopped