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

from Gabby Kleins blog:

"A meeting took place on September 11 and 12, 2018 by the ICD-10 Coordination and Maintenance Committee.

On September 12, Donna Pickett discussed a proposal for “chronic fatigue syndrome”.
Dr. Lily Chu of the IACFS/ME called in with her approval of NCHS/CDC’s proposal for revised classifications for CFS and ME and a new classification for SEID."

"
Proposed item changes under G93 – other disorders of the brain

• The title for G93.3 classification changed from Postviral to Postviral and other fatigue syndromes
• Benign Myalgic Encephalomyelitis changed to Myalgic Encephalomyelitis with new code – G93.32
• Switch chronic fatigue syndrome from R53.82 to new code – G93.33
• New item for systemic exertion intolerance disease with code G93.30
• New code for other postviral and related fatigue syndromes – G93.39"

there is a short video of the relevant bit of the meeting (I've not been able to watch it).

https://relatingtome.net/nchs-cdc-proposal-for-icd-10-cm/

eta: background info from Bateman Horne Center

https://batemanhornecenter.org/icd-10-code-for-mecfs/

 

Open Access: https://bmjpaedsopen.bmj.com/content/2/1/e000233

PDF: https://bmjpaedsopen.bmj.com/content/2/1/e000233.full.pdf

Adolescent Health

Original article

Systemic exertion intolerance disease diagnostic criteria applied on an adolescent chronic fatigue syndrome cohort: evaluation of subgroup differences and prognostic utility

Abstract
Objective Existing case definitions for chronic fatigue syndrome (CFS) all have disputed validity. The present study investigates differences between adolescent patients with CFS who satisfy the systemic exertion intolerance disease (SEID) diagnostic criteria (SEID-positive) and those who do not satisfy the criteria (SEID-negative).

Methods 120 adolescent patients with CFS with a mean age of 15.4 years (range 12–18 years) included in the NorCAPITAL project (ClinicalTrials ID: NCT01040429) were post-hoc subgrouped according to the SEID criteria based on a comprehensive questionnaire. The two subgroups were compared across baseline characteristics, as well as a wide range of cardiovascular, inflammatory, infectious, neuroendocrine and cognitive variables. Data from 30-week follow-up were used to investigate prognostic differences between SEID-positive and SEID-negative patients.

Results A total of 45 patients with CFS were SEID-positive, 69 were SEID-negative and 6 could not be classified. Despite the fact that clinically depressed patients were excluded in the NorCAPITAL project, the SEID-positive group had significantly higher score on symptoms suggesting a mood disorder (Mood and Feelings Questionnaire): 23.2 vs 13.4, difference 9.19 (95% CI 5.78 to 12.6). No other baseline characteristics showed any group differences. When accounting for multiple comparisons, there were no statistically significant differences between the groups regarding cardiovascular, inflammatory, infectious, neuroendocrine and cognitive variables. Steps per day and Chalder Fatigue Questionnaire at week 30 showed no differences between the groups.

Conclusion The findings question the discriminant and prognostic validity of the SEID diagnostic criteria in adolescent CFS, and suggest that the criteria tend to select patients with depressive symptoms.

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

http://dx.doi.org/10.1136/bmjpo-2017-000233

 

@Dx Revision Watch

Do you agree that "increased fatigue after activity" is an accurate indicator of PEM? Presumably you don't. Yet in the above study, patients that reported this were classified as having PEM for the purpose of meeting IOM criteria. This was also done with data that had been collected before the IOM report had even been published. The data were not planned to be used for this purpose.

Actually, the IOM report explicitly says that PEM is more than fatigue following a stressor.

The conclusions of the study may reflect the inadequate operationalization of IOM criteria rather than inadequacies with the criteria themselves.

 

Not had time to read the full paper yet, strategist.

 

I understand why there seems to be the wish to give CFS, PVFS, ME and SEID their own place, but my spontaneous thought was: How can you differentiate between these? We know the discussions ME vs. CFS vs. SEID, and what I took with me was that there's no consensus and unclarity. Since I think the people who made these suggestions know that themselves, what's the agenda/idea/thoughts behind this proposal, does someone know or understand?

 

It's perhaps unhelpful. I suppose one reason to categorise them differently would be to make it easier to stratify patients for research purposes. But I'm not sure this is any better than assessing trial participants and seeing which labels apply. Especially because it gives the impression that we can tell the difference between there patients, when in truth, I'm not sure we can.

 

The IOM panel made a recommendation for a new ICD code.

https://www.ncbi.nlm.nih.gov/books/NBK284910/

The last article provided in the original post says:

https://batemanhornecenter.org/icd-10-code-for-mecfs/

PS: I'm not sure I understand why there has to be a new code. Is it because the name CFS and the associated ICD code have such a poor reputation? What is the problem with the current situation?

 

I understand it such that the IOM report proposed to separate CF/Neurasthenia and ME/CFS, which WHO already does, only some countries (like Canada and US?) still have this connection. I think this is quite reasonable.

It does not suggest to have codes for CFS, ME, PVFS, SEID, respectively.

I have my own opinion about the different "names" and diagnostic criteria, but that's not the issue here.

It's just a feeling, I admit, but I don't think this is reasonable at this point of time. It's more important to have CF and ME&Co separated, which can be grounded on facts. Or maybe I don't see something? Many people have a better picture about ME politics than I.

 

Inara, to clarify:

The Canadian Tabular List (ICD-10-CA Tabular List) has for a number of years had all three terms in the Neurological chapter under G93.3, as does the German clinical modification (ICD-10-GM).

The U.S. is the only country that has Chronic fatigue syndrome (as "Chronic fatigue syndrome NOS") coded under the Symptoms, signs chapter, as an inclusion under R53.82 Chronic fatigue, unspecified.

All other ICD-10 users (apart from the Canadian and German modifications) have PVFS and BME coded in the Tabular List at G93.3, with Chronic fatigue syndrome in the Alphabetical Index, where it is indexed to the G93.3 code.


This is how the draft for the U.S.'s adaptation of ICD-10 (ICD-10-CM) had stood in 2003:

Draft ICD-10-CM June 2003 release:

https://dxrevisionwatch.files.wordpress.com/2015/03/icd-10-cm-draft-2003.pdf




(In ICD-10, "NOS" means "Not otherwise specified")




In 2004, it was decided by CDC/Bill Reeves, behind closed doors, that the "Chronic fatigue syndrome, postviral" category under G93.3 would be deleted, leaving the only CFS category as "Chronic fatigue syndrome NOS" under R53.82.


No draft was released in the years 2004, 2005 or 2006.

This is how things stood for the draft that was released in 2007 (which reflects the deletion made by Bill Reeves, in 2004):

Draft ICD-10-CM July 2007 release:

https://dxrevisionwatch.files.wordpress.com/2015/03/2007-tabular-list-release.pdf




Note: the "Chronic fatigue syndrome, postviral" inclusion term has been deleted from G93.3, leaving a "Chronic fatigue syndrome NOS" in the Symptoms, signs chapter, as an inclusion under "Chronic fatigue, unspecified".






For a history of the coding of PVFS, ME and CFS in ICD-9, ICD-9-CM, ICD-10 and the draft for ICD-10-CM up to March 2001, see this archived CDC document:

A Summary of Chronic Fatigue Syndrome and Its Classification in the International Classification of Diseases
Prepared by the Centers for Disease Control and Prevention, National Center for Health Statistics, Office of the Center Director, Data Policy and Standards, CDC archive document, March 2001.


For the classification of PVFS and BME in the ICD-8 Tabular List (1967) and the ICD-8 Alphabetical Index (1969) and for the classification of these terms in the ICD-9 Tabular List (1975) and the ICD-9 Alphabetical Index see this post, which includes screenshots from these editions, as archived on the WHO IRIS website:

https://www.s4me.info/threads/who-w...-leads-to-poor-outcome.5109/page-9#post-96715


The term "Benign myalgic encephalomyelitis" wasn't coded under "Postviral fatigue syndrome" at G93.3 until ICD-10 was published, in 1992:

"ICD-10

"WHO published ICD-10 in 1992 and included many modifications, among them relocation of some diagnoses to different chapters within the classification. WHO created a new category G93, Other disorders of brain, in Chapter VI, Diseases of the Nervous System, and created a new code G93.3, Postviral fatigue syndrome, a condition which was previously in the symptom chapter of ICD-9. WHO also moved benign myalgic encephalomyelitis to the new code G93.3. The alphabetic index contains other terms, such as chronic fatigue syndrome, that WHO considers synonymous or clinically similar." [1]

1 A Summary of Chronic Fatigue Syndrome and Its Classification in the International Classification of Diseases
Prepared by the Centers for Disease Control and Prevention, National Center for Health Statistics, Office of the Center Director, Data Policy and Standards, CDC archive document, March 2001.

 

...and it's to the Symptoms, signs chapter that the WHO's Dr Tarun Dua would like to relocate "ME/CFS" [sic]* for ICD-11 [1].

*Dr Tarun Dua proposes to delete “Myalgic encephalitis/Chronic Fatigue Syndrome (ME/CFS)” [sic] from the Diseases of the nervous system chapter and relocate to the Symptoms, signs chapter, as a child under Symptoms, signs or clinical findings of the musculoskeletal system.

Although WHO classifications team leader, Dr Robert Jakob, has stated, "As discussed earlier, chronic fatigue syndrome will not be lumped into the chapter ‘signs and symptoms.'" [2].

1 Update on the status of the classification of PVFS, ME and CFS for ICD-11: Part One
Update on the status of the classification of PVFS, ME and CFS for ICD-11: Part Two

2 Personal correspondence, Dr Robert Jakob, Team Leader Classifications and Terminologies, to Suzy Chapman, CCd to: Stefanie Weber; Dr Christopher Chute; Linda Best; Molly Meri Robinson Nicol; Dr Geoffrey Reed; Dr Tarun Dua; Dr Ties Boerma; Countess of Mar, March 2017.

 

@Inara The IOM explicitly stated that "a diagnosis of CFS is not equivalent to a diagnosis of ME" in a discussion of CFS and ME definitions. It also stated that not all Fukuda CFS patients will meet the IOM criteria. So they clearly saw CFS and ME as different things.

PVFS is an ambiguous, generally undefined term. But the CFS and ME definitions allow more than just postviral.

Re SEID and ME relation - The IOM itself is not specific on this. The other question is its usage - right now, I expect that SEID is not being used outside the US. In the US, it shows up in some medical education although the CDC and NIH use the term ME/CFS as recommended by CFSAC. But medical education providers and medical associations are not required to follow that.

 

@JaimeS what is the #MEAction position on these proposed changes?

 

Thank you, Suzy and @Medfeb.

To me, personally, it makes sense to separate CFS/CF from ME. So to me, the US classification makes sense, because - historically, after reading "Osler's Web" - CFS was meant as a synonym for CF, and if I understand correctly, that's what the US ICD says. (Although I can't imagine that's the US viewpoint?)

But the US deviates here from WHO ICD10, right? The other countries remain closer to WHI ICD10?

So does the US follow the IOM proposal, and "preferring" the word ME, or is this to be interpreted as an "intermediate step" in putting ME+CFS in the symptoms and signs chapter, as suggested by Dua?

What I find striking are the differences between countries. If I understood correctly, Germany for instance doesn't separate CFS and ME (even worse, they call CFS "Chronic Tiredness Syndrome"), but CFS is excluded under CF/Neurasthenia. Isn't it the same in UK? One could say the ICD classification mirrors a country's view about ME, namely predominantly the BPS view in Germany, UK and so forth, and a less dominated BPS view in US. Is that a wrong interpretation?

Edit: I wouldn't want a new item for SEID. What is needed in my opinion is clarity first about the existing names (P)CFS, ME and their classification. For research, ICD is not very relevant.

 

The WHO's ICD-10 has all three terms coded under (and in the case of CFS, indexed to) G93.3, with an exclusion for G93.3 under F48.0 and an exclusion for G93.3 under R53 Malaise and fatigue.

The UK mandates the use of the WHO's ICD-10 and uses ICD-10 version for 2015, as above.

Canada has all three terms coded in the Tabular List under G93.3.

Germany has four terms coded in the ICD-10-GM Tabular List under G93.3 but has "Chronisches Müdigkeitssyndrom [Chronic fatigue syndrome]" as the title (or lead) term, whereas ICD-10 has PVFS as the title term for G93.3.

Other countries using ICD-10 or a country specific modification of ICD-10 follow the WHO's ICD-10 chapter location for the three terms.


The U.S. ICD-10-CM is the only country to deviate from the WHO's ICD-10 in respect of chapter placement for these three terms and the current structure for ICD-10-CM has been in place since the 2007 draft release.

 

@Inara there is no point asking me what the IOM panel understands by the terms SEID, ME, CFS and PVFS; or what Donna Pickett understands by these terms; or what the IACFS/ME understands by the IOM's use of these terms or by Donna Pickett's use and understanding of these terms - it is a frigging mess.

And as for Dr Tarun Dua - she does not even use the terms that are currently coded for in ICD-10...

 

I'm not intending to submit a response to the September 11-12 C & M meeting. But if I were, one of the questions I would be raising is what happened to Option 1 in between the meeting, itself, and the subsequent posting of the updated Topic Packet Part 2?

In Donna Pickett's presentation, two proposals are shown on the slides:

Option 1:





There is no setting out of Option 1 or any invitation to comment on Option 1 included in the updated Topic Packet Part 2 that was posted after the meeting had taken place, despite an Option 1 having been presented at the meeting and included in the meeting slides.

The updated Topic Packet Part 2 only sets out this proposal, below. It's not even clear from the text on Pages 11 and 12 of the updated Topic Packet Part 2 whose proposal this represents, ie NCHS or IACFS/ME:

 

19 days, now, since the September 11-12 ICD-10-CM Coordination and Maintenance Committee and no position statements, as far as I am aware, from:

Solve ME/CFS Initiative (SMCI)
IACFS/ME (who participated in the meeting)
#MEAction

Deadline for responses to proposal Option 1 and proposal Option 2 is November 13.

 

https://twitter.com/user/status/1046393373987360773



eta: thought this quite poignant given recent OMF symposium

 

I wonder if this is something we should have a look on? @Esther12 @Medfeb @James Morris-Lent?

 

The IOM criteria were published in 2015. They weren’t able to include the most recent research at the time, such as the first brain inflammation study from Japan, because it published after they had completed the literature review, or something like that.

The recommendations include a suggested update. They figured 5 years.

An update for a report that big to be published in 2020 should already be in planning. I haven’t heard of any such thing.

I would guess they assumed NIH would follow their recommendation to sharply increase funding (presumably promptly after publishing, say staring in FY 2016).

This is an NIH fail, for not following the recommendations in the report they asked for.

(Edit: grammatical error.)