USA - NCHS/CDC Proposal for ICD-10-CM - adding SEID

I am not in the US and cannot attend the March 5-6 ICD-10 Coordination and Maintenance (C & M) Committee Meeting.

Potential changes to CFS and to PVFS, BME coding were placed on the agenda of the September 2018 C & M meeting at the 11th hour.

The discussion of CFS and the proposals presented at the September meeting by CDC's Donna Pickett (for which Lily Chu contributed on behalf of the IACFS/ME) were formulated too late for inclusion in the diagnosis codes Topic Packet. [An updated Topic Packet file was subsequently uploaded to the C & M meeting webpage which had been amended to include the topic of CFS and only one of the two proposals presented at the meeting.]

The fact that the Tentative Agenda for the March meeting does not include CFS does not preclude the addition of CFS to the list of topics in the full Topic Packet, which should be available one or two days before the March meeting.

Nor does it preclude CFS being added as a late addition to the agenda, as was the case for the September meeting.

The outcome of the proposals for CFS presented at the September meeting is unknown.

If no decision has been made by NCHS/CDC, it is possible that the topic of CFS and a revised proposal (or possibly more than one revised proposal) might be added to the full Topic Packet agenda for continued discussion in March. It is not at all unusual for a topic to be presented more than once, as proposals are refined.

As soon as the Topic Packet is available (around March 3-4) I will post a copy here.


It would be prudent if an advocate could attend the March meeting.

If the topic of CFS is on the agenda for March then this proposal by the VA to change its own nomenclature* and how it relates to the NCHS/CDC C & M maintenance and revision process can be raised as a stakeholder question from the floor. Alternatively, the question could be raised via a phone link during or at the end of Donna Pickett's presentation.

*"§ 4.88a Chronic Fatigue Syndrome
Currently, § 4.88a specifies older diagnostic criteria for the diagnosis of CFS and uses outdated terminology to refer to this complex disease.VA proposes to update the nomenclature for this disease, which is also known as systemic exertion intolerance disease (SEID) or myalgic encephalomyelitis (ME), by changing the diagnostic code name to ‘‘Systemic Exertion Intolerance Disease (SEID)/Chronic Fatigue Syndrome (CFS).’" Source: https://www.govinfo.gov/content/pkg/FR-2019-02-05/pdf/2019-00636.pdf


Donna Pickett should be prepared to discuss this proposal of the VA in the context of ICD-10-CM and in the context of the September proposals (and any revised March proposals) for these ICD-10-CM terms.

Details about registering to attend in person or to contribute via a phone link will be in the Tentative Agenda file: https://www.federalregister.gov/documents/2019/02/06/2019-01213/national-center-for-health-statistics-nchs-icd-10-coordination-and-maintenance-candm-committee


As far as retiring ICD terms is concerned:

In ICD-10-CM, BME is the specified inclusion term under PVFS (which is the G93.3 title term).

Given that the WHO's ICD-10 continues to contain both PVFS and BME, and given that the WHO/MSAC/CSAC committees have decided to retain the terms BME and CFS for ICD-11 (and to retain these terms in their legacy chapter, Diseases of the nervous system), it could be problematic for a "clinical modification" like ICD-10-CM to retire the PVFS and BME terms, since this could disrupt the continuity of legacy data for reporting and data aggregation across ICD-10, the clinical modifications of ICD-10, and eventually ICD-11, when countries begin to transition to ICD-11.

Although one of the proposals at the September C & M meeting had been for the inclusion of the SEID term in ICD-10-CM, neither of the two proposals presented in September had proposed the retirement of the BME (or ME) term.

Both proposals had proposed creating a separate sub code for ME under a (possibly revised) G93.3 title category.

So if an individual or advocacy group were able to participate in the March meeting and raise the issue of the VA's proposal (if CFS is on the March agenda) I think that would be useful.
 
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Sunshine3 said:
What does this mean for us... Is VA the CDC?
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VA is a bit like NHS but restricted for veterans. They provide more than health care but as an agency it is one of the largest health care providers in the US. They run clinics, hospitals and various other programs. Budget-wise it is enormous.

It's its own bureaucracy so it's unclear what it means other than various agencies are adopting the IOM report's recommendations.
 
rvallee said:
VA is a bit like NHS but restricted for veterans. They provide more than health care but as an agency it is one of the largest health care providers in the US. They run clinics, hospitals and various other programs. Budget-wise it is enormous.

It's its own bureaucracy so it's unclear what it means other than various agencies are adopting the IOM report's recommendations.
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Thanks but where does Fukuda fit into it? I can cope with IOM criteria but Fukuda is a joke.
 
Sunshine3 said:
Thanks but where does Fukuda fit into it? I can cope with IOM criteria but Fukuda is a joke.
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Seems they're adopting the bad from each side.

Still an improvement over old CDC or Oxford but as far as progress goes, this is not particularly useful.

There are very few genuine domain experts and they're rarely involved so most people trying to implement that probably have a mix of partly accurate information but a healthy dose of disinformation to warp it.
 
Colleen Steckel said:
I wasn't specifically referring to CBT and GET. Sorry that was not clear. I was referring to treatments being based on patients changing their behavior instead of doctor intervention.

I'm referring to the CDC recommendations that is all about "living with ME/CFS"... nothing about actually treating the disease.

From the website:

"
  • Professional counseling: Talking with a therapist to help find strategies to cope with the illness and its impact on daily life and relationships.
  • Balanced diet. A balanced diet is important for everyone’s good health and would benefit a person with or without any chronic illness.
  • Nutritional supplements. Doctors might run tests to see if patients lack any important nutrients and might suggest supplements to try. Doctors and patients should talk about any risks and benefits of supplements, and consider any possible interactions that may occur with prescription medications. Follow-up tests to see if nutrient levels improve can help with treatment planning.
  • Complementary therapies. Therapies, like meditation, gentle massage, deep breathing, or relaxation therapy, might be helpful.
Important note: Patients should talk with their doctors about all potential therapies because many treatments that are promoted as cures for ME/CFS are unproven, often costly, and could be dangerous."
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Apologies if I missed someone else responding to this in a long thread.

I can understand why this is confusing because CDC partially updated their website (with the help of CFSAC, orgs, advocates) to incorporate some of the IOM material. Prior to the update, the page was really bad and advocated CBT and GET, and was using Fukuda criteria. Not that long ago, it was advertising some of their (CDC's) studies purporting to find neuroticism in CFS patients (bad data analysis; this is not a real thing), and other similar things (because CDC used to do that).

Some of CDC's website hasn't been cleaned up from old useless recommendations. In my view, it's not useful to talk about daily living strategies or tips for improving non-medical quality of life when they haven't first addressed the seriousness of the disease. (tbh, not sure why they do the second at all on a medical site; I think they're just panicked about having nothing to say)

There's no evidence based treatments specifically for ME/CFS (although there may be for comorbid conditions, symptoms, and complications, although of course that will vary some by the patients). I am not sure why no drugs means they write to try non-evidence-based CAM, though.

However, if you want to know what IOM recommends, it's best to read IOM materials, not other sites that (reluctantly) added some IOM recommendations onto a pre-existing site (as reading CDC or wherever will not help inform you about what IOM has said).
IOM materials can be found here:
http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx

There are also some journal-published articles that came out at the time of publication:
https://jamanetwork.com/journals/jama/article-abstract/2118591 (no longer open access)
https://annals.org/aim/article-abst...chronic-fatigue-syndrome?doi=10.7326/M15-0357 (also no longer open access)
 
SNOMED CT US Edition posts latest release:

The March 01, 2019 release of SNOMED CT US Edition was posted today on the SNOMED CT browser platform.

I can confirm that no new SNOMED CT Concept code or Synonym term under an existing SNOMED CT Concept code for either "Systemic exertion intolerance disease" or "SEID - Systemic exertion intolerance disease" has been added to the US Edition's March release.

The US Edition posts a release twice yearly. The next release for the US Edition will be the September 01, 2019 release.

The US release can be accessed from this page - click on the blue button for "Go browsing United States edition 2019-03-01" https://browser.ihtsdotools.org/
 
WillowJ said:
Here's the process for submitting a new proposal, if it comes to that (I understand that Suzy and Mary and others have done this before, and it's generally not well received for no evident reason, but there's no reason why we can't keep trying):

https://www.cms.gov/Medicare/Coding/ICD10/newrevisedcodes.html
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@WillowJ

Not sure what your intention is here, WillowJ?

The link you have just posted is for submission of proposals for ICD-10-PCS Procedure Codes.

If you are thinking of proposals for Diagnosis Codes for ICD-10-CM, it is this process:

https://www.cdc.gov/nchs/icd/icd10cm_maintenance.htm


But my post in Post #169 concerns the US Edition of the SNOMED CT terminology system - not ICD-10-CM.

And to be clear, I would not support the inclusion of the SEID term in any of the following:

ICD-10-CM
ICD-11

SNOMED CT International Edition
any of the various SNOMED CT National Editions.
 
With regard to the March 01, 2019 release of SNOMED CT US Edition, there are a number of possibilities:

a) No request for the addition of the SEID term to the March release has been submitted by NCHS/CDC, any other US agency or any other US party.

b) A request may have been submitted and rejected by the managers of the SNOMED CT US Edition;

c) A request may have been submitted after the deadline for submitting requests for consideration for addition to the March release but may be under consideration for the September release.
 
Dx Revision Watch said:
Not sure what your intention is here, WillowJ?

The link you have just posted is for submission of proposals for ICD-10-PCS Procedure Codes.

If you are thinking of proposals for Diagnosis Codes for ICD-10-CM, it is this process:

https://www.cdc.gov/nchs/icd/icd10cm_maintenance.htm
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Good catch.

I think I am posting on a different thread than the one I meant to. I meant to post where it was being discussed to change the name (the likeable, but probably futile, suggestion of Ramsay disease was made).

I would favor any reasonable proposal that discontinued the use of fatigue in the name, myself.

Edit: when I looked for the CDC page earlier today, it looked like it hadn't been updated in a year or two (CMS was the next best thing I could find, but I thought they had a day for procedure codes and a day for diagnostic codes listed... coming up in a few days but too late for submissions just now). Maybe the outdated CDC one was a cached page as the CDC site site was down for a bit. Nice to see it is actually updated.
 
Just to clarify - I have never submitted a request for the addition of a term to the US ICD-10-CM, though I have in the past submitted responses to proposals submitted by others and by CDC, themselves, following presentation of proposals at NCHS/CDC Coordination and Maintenance Committee meetings.

Nor have I submitted requests for addition or changes to terms to the SNOMED CT US Edition.

I have submitted a number of proposals to ICD-11 (some jointly with Mary) and have collaborated in the submission of requests for changes to the SNOMED CT International Edition, with the requests for SNOMED CT International Edition being accepted and implemented, and subsequently incorporated into the various national extensions.
 
I couldn't find the ICD-11 submission page, but perhaps I just didn't look hard enough.

I really want CFS gone, and I gather that's the majority view.
 
WillowJ said:
I couldn't find the ICD-11 submission page, but perhaps I just didn't look hard enough.

I really want CFS gone, and I gather that's the majority view.
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The ICD-11 proposal mechanism requires that you register for access with the Orange Maintenance Platform in order to view new proposals (there is currently a backlog of over a 1000 unprocessed proposals) and in order to submit new proposals.

There are currently no proposals for the inclusion of the SEID term in ICD-11, which is scheduled for presentation to WHA for approval in May, this year, with approval taking effect from January 01, 2022.


I would also like to see the CFS term retired but not replaced with SEID.

And yes, I consider it is futile to suggest "Ramsay disease" for the reasons I set out in that thread.
 
WillowJ said:
Edit: when I looked for the CDC page earlier today, it looked like it hadn't been updated in a year or two (CMS was the next best thing I could find, but I thought they had a day for procedure codes and a day for diagnostic codes listed... coming up in a few days but too late for submissions just now..
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Yes, the next meeting of the NCHS/CDC ICD-10-CM Coordination and Maintenance Committee is March 5 and 6th. The deadline for requesting items for discussion on March 5 was December 7, 2018 - so yes, it's too late.

The Tentative Agenda is already posted in this thread and does not include discussion of changes for CFS. The full agenda (Topic Packet) isn't usually posted until a couple of days or one day before the meeting. So it's not yet publicly known if the discussions of CFS at the September 2018 meeting are being carried forward to the March meeting, with a revised set proposals being presented by CDC or by other parties.

As soon as the Topic Packet for next week's meeting is published, I'll post a copy. I am checking for it daily.

IMPORTANT EDIT: There are two Tentative Agendas: one for Procedure Codes and one for Diagnosis Codes.

Diagnosis Codes: https://www.cdc.gov/nchs/data/icd/tentative_agenda_march_2019.pdf
Procedure Codes: https://www.cms.gov/Medicare/Coding/ICD10/Downloads/2019-ICD10-March-Agenda-Handouts.pdf


According to the Procedure Codes Tentative Agenda, for the March 5-6 meeting, Proposals for diagnosis code topics are scheduled for Day 2 March 6.
 
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IMPORTANT EDIT to previous post: There are two Tentative Agendas: one for Procedure Codes and one for Diagnosis Codes.

Diagnosis Codes: https://www.cdc.gov/nchs/data/icd/tentative_agenda_march_2019.pdf
Procedure Codes: https://www.cms.gov/Medicare/Coding/ICD10/Downloads/2019-ICD10-March-Agenda-Handouts.pdf


According to the Procedure Codes Tentative Agenda, for the March 5-6 meeting, "Proposals for diagnosis code topics are scheduled for March 6, 2019 and will be led by the Centers for Disease Control (CDC)."


So for the March meeting, it appears that Procedure Codes are scheduled for a morning session only (Tuesday 5) and Diagnosis Codes will start on Day Two (Wednesday 6) for a morning and an afternoon session.

Day 1: March 5, 2019: The meeting will begin at 9:00 AM ET and will end promptly at 1:00 PM ET. There will not be a lunch break for this session. The meeting will be webcast via CMS at http://www.cms.gov/live/

Day 2: March 6, 2019: The meeting will begin at 9:00 AM ET and will end at 5:00 PM ET. Lunch will be held from 11:30 AM ET to 1:00 PM ET. The meeting will be webcast via CMS at http://www.cms.gov/live/
 
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Proposals Part 1 now available:


March 5-6, 2019 NCHS/CDC ICD-10-CM Coordination and Maintenance Committee meeting

Proposals Part 1: Diagnosis Topics:

https://www.cdc.gov/nchs/icd/icd10cm_maintenance.htm#Meetings

https://www.cdc.gov/nchs/data/icd/Topic-packet-March-2019-Part-1.pdf


NB: No listing of re-presentation of Chronic fatigue syndrome or SEID appears in Part 1: Diagnosis Topics.

Discussion of potential changes to CFS coding had been added as a late agenda item for presentation at the September 11-12, 2018 C & M Committee meeting and had not been listed in the initial versions of Proposals Parts 1 and 2. A revised PDF for Proposals Part 2 which included proposals for changes to CFS coding was subsequently posted on the CDC meetings page and replaced the initial PDF.

For the March 5-6 meeting, either:

a) A decision has been made on CFS proposals presented at the September 2018 meeting;
b) No decision has been made on CFS proposals presented at the September 2018 meeting;
c) No decision has been made and the topic of CFS is intended to be revisited at the March 2019 meeting but has not been included in proposals PDF Part 1.


Edited to add Diagnosis Agenda Part 2

ICD-10 Coordination and Maintenance Committee Meeting, March 5-6, Diagnosis Agenda 2019 Part 2

https://www.cdc.gov/nchs/data/icd/Topic-packet-March-2019-Part-2.pdf

(which also does not include the discussion topic: Chronic fatigue syndrome).
 

Attachments

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Day 2 streaming live now:


Yesterday's CMS Procedure Code Topics ran over to Day 2. So discussion of Diagnosis Topics has started late.

Donna Pickett started with the topic of Sepsis, which is not listed in Proposals Part 1 and Part 2 and has been added as a late addition to the Agenda. Some tabled topic presentations are being skipped due to lack of time.
 
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