Updates on status of ICD-11 and changes to other classification and terminology systems

Please note the following clarifications

1. The part of the submission you refer to about those who fit the ME/CFS criteria need to be thoroughly screened is based on the expert guidance in the #MEICPrimer.

"Our panel strongly recommends that only the name ‘myalgic encephalomyelitis’ be used to identify patients meeting the ICC because a distinctive disease entity should have one name. Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification." pg ii.

As that was written in 2012 and the IOM report did not come out until 2015, the submission included the ME/CFS-IOM (SEID) criteria.

And, yes, ME International does support all patients get thorough screening to clarify what diagnosis is appropriate. The screening recommended includes the thorough biological testing on page 11 of the ME ICPrimer.

I do not think anyone who belongs in the ME Criteria would be left out by using the ME-ICC with the #MEIC Primer. The purpose of making sure everyone is thoroughly screened is to overcome the obstacle of doctors who don't understand ME.

2. The submission clarifies that the term ME/CFS as per the IOM is not referring to one patient group as it is an umbrella term that combined ME & CFS patient groups into one broad group. As stated above those who are in that broad group need to go on to be screened for ME.

3. This comment "US patients diagnosed with ME/CFS to continue being dumped into and lost in the "chronic fatigue, unspecified" bucket" couldn't be further from the truth.

I think we can all agree that no one should ever be dumped in the chronic fatigue unspecified bucket. The purpose for making sure ALL patients are thoroughly screened is to give them the best chance at getting personalized medicine and targeted treatments. Too often patients are sent home to modify their behavior by pacing/diet/salt intake with no other medical intervention offered. The ME IC Primer offers a LOT more in the way of testing and treatments. We want everyone to be given this level of care.

I believe the challenge comes down to a disagreement about the value of the IOM report as a diagnostic tool leading to a distinct disease. While some organizations/advocates feel the ME/CFS-IOM diagnosis is sufficient for all patients, there is a growing number of advocates, patients & researchers who feel this is inadequate for ME patient care and research and are advocating for acceptance worldwide of the ICC. The experts explain this much better than I can.

"The rationale for the development of the ICC was to utilize current research knowledge to identify objective, measurable and reproducible abnormalities that directly reflect the interactive, regulatory components of the underlying pathophysiology of ME. Specifically, the ICC select patients who exhibit explicit multi-systemic neuropathology, and have a pathological low threshold of physical and mental fatigability in response to exertion. Cardiopulmonary exercise testretest studies have confirmed many post-exertional abnormalities. Criterial symptoms are compulsory and identify patients who have greater physical, cognitive and functional impairments. The ICC advance the successful strategy of the Canadian Consensus Criteria (CCC) of grouping coordinated patterns of symptom clusters that identify areas of pathology. The criteria are designed for both clinical and research settings."

For those who may not be aware of who all was involved in writing the ME IC Primer - they are some of the most well known respected clinicians and researchers in our field.

From pg ii: An International Consensus Panel, consisting of clinicians, research investigators, teaching faculty, and an independent educator, represent diverse backgrounds, medical specialities and geographical regions. Collectively, the members of the panel have: • diagnosed and/or treated more than 50 000 patients who have ME; • more than 500 years of clinical experience; • approximately 500 years of teaching experience; • authored hundreds of peer-reviewed publications, as well as written chapters and medical books; and • several members have co-authored previous criteria.

Primer: https://www.me-international.org/uploads/1/2/7/6/127602984/me_icprimer_2015.pdf

 

I'm too lazy to do more than a superficial analysis but consider that in one study by Baraniuk the Oxford criteria labelled about 20% of the population as having CFS. The label "chronic fatigue, unspecified" should be even easier to meet than the Oxford criteria.

Opinions on prevalence rate of IOM's ME/CFS are going to vary but it should about 1%, perhaps closer to half that. Out of these, a portion will meet ICC the rest will not.

This is an absurd and incompetent proposal.

 

Just to clarify - would you also say this about the criteria established in UK's 2021 NICE guidelines?

And if so, does that mean the following sentence from the submission should be revised - as in red - to include NICE's criteria?

Those who fit the ME/CFS criteria as defined in either the Canadian Consensus Criteria or the IOM/NAM report (as shown on the CDC website) [or the criteria in the UK 2021 NICE guidelines] also need to be thoroughly screened using the ME IC Primer. If they fit the ME-ICC criteria they need to be given the ME diagnosis and the G93.3 label. If they do not have ME as per the ICC they would be given the CFS label and the R53.82 code.
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I appreciate the UK does not use the R53.82 code - and in fact they currently use the same codes for ME and CFS. But the submitted comments recommend different codes be established for ME and CFS. It would seem this would be the logical extension of that recommendation - wherever that other code is placed.

 

Hmm all very sinister. Working out how can this become something simple and relevant enough it can be discussed more 'front page' - I've heard mutterings elsewhere about FOIs and the issue of people getting recategorised with other things almost as if to get around the guideline change. This sort of thing sounds like a similar undermining behind the scenes of what apparently is supposed to be the 'structure' keeping things above board.

On basis this currently is just for IAPT they are basically just translating to a list of 'which flavour of CBT telling someone to ignore their symptoms and be less stressed' so the phone script can insert the relevant body part/issue to tell them to ignore? e.g. if it was migraine or scalp issues or trigeminal neuralgia I assume it is disorder of the head, but colitis or IBS it is disorder of gastro, but cancer gets a separate one for various reasons. Because the worries are different for heart disease or cancer or whatever.

Could/would this expand further within the health service to become a service that just pretends all illnesses are caused by wrong thinking and only needs to know what the imaginary thought/stress issue is thereby removing the diagnosis itself or any other cause? I know that takes a bit of 'gaming out' but what is what they are doing here all about and what is the point in what they are doing to take hard-won diagnoses of illnesses at various levels of medicine and remove them?

 

The files for the 2023 release of the FY ICD-10-CM were posted on the CDC site yesterday.

For those unhappy with the proposals for changes submitted in the names of 7 US orgs (The International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, #MEAction, Open Medicine Foundation, Solve M.E., Massachusetts ME/CFS & FM Association, the Minnesota ME/CFS Alliance, and Pandora Org.) at the ICD-10-CM Coordination and Maintenance Committee Meeting September 14-15, 2021 (Page 169 of the Topic Packet), I am sorry to be the bearer of bad news:

Changes approved for the ICD-10-CM FY 2023 Tabular List and Index:



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Edited to add:

NB: I have not been able to find a listing for the ICD-10-CM term "Chronic fatigue syndrome NOS (R53.82)" that is specified as an Excludes1 under G93.3 in either the FY 2023 Tabular List or the Index!

The changes proposed by CDC, as set out in the September 2021 Topic Packet, had been:

G93 Other disorders of brain
Revise G93.3 Postviral and related fatigue syndromes
Delete Benign myalgic encephalomyelitis

Excludes1: chronic fatigue, unspecified (R53.82)
Add neurasthenia (F48.8)

with "Chronic fatigue syndrome NOS" deleted from under R53.82

Not:

Excludes1: Chronic fatigue syndrome NOS (R53.82)

In ICD, any category code listed as either an Excludes1 or an Excludes2* would be expected to be listed in both the Index and the Tabular (or listed only in the Index). What CDC has just published for 2023 appears to be an ICD convention anomaly that needs querying.

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Files can be downloaded from Zip files here:

https://www.cdc.gov/nchs/icd/Comprehensive-Listing-of-ICD-10-CM-Files.htm

Comprehensive Listing ICD-10-CM Files
2023 release of ICD-10-CM

The FY2023 ICD-10-CM codes are to be used from October 1, 2022 through September 30, 2023.

Note: This replaces the FY 2022 – April 1, release. These files listed below represent the ICD-10-CM FY2023 October 1, release. The October 1, FY2023 ICD-10-CM is available in both PDF (Adobe) and XML file formats. Most files are provided in compressed zip format for ease in downloading. These files have been created by the National Center for Health Statistics (NCHS), under authorization by the World Health Organization. Any questions regarding typographical or other errors noted on this release may be reported to nchsicd10cm@cdc.gov .

• ICD-10-CM FY2023 Guidelines
• ICD-10-CM FY2023 Full PDF
• ICD-10-CM FY2023 XML
• ICD-10-CM FY 2023 Addenda PDF
• ICD-10-CM FY 2023 List of codes and Descriptions
• ICD-10-CM FY2023 Order Files
• ICD-10-CM FY2023 Conversion Table

Select the first Zip file named:

• ICD-10-CM FY2023 Guidelines

Then open file named:

Thursday, June 9, 2022 2:40 PM 21726801 icd10cm-Tabular-Index-2023.zip

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Please note that owing to an unexpected medical problem for which timely surgery is going to be required, I shall not be commenting further on these approved changes for the 2023 release of the ICD-10-CM.



*For explanations of how the terms, Excludes1 and Excludes2 are applied in ICD-10-CM see:

ICD-10-CM FY2023 Guidelines

https://ftp.cdc.gov/pub/Health_Statistics/NCHS/Publications/ICD10CM/2023/

and attached below.

 

Dx Revision Watch - Thank you for bringing the update to our attention.

This is an opportunity to re-educate doctors that these three different labels have different diagnostic criteria. Someone with CFS-Fukuda who doesn't have PEM requires a very different medical approach than someone who has Severe ME. Researchers will need to understand it is important to stratify such a broad spectrum of patients in order to do proper research.

We have a lot more researchers using the ME-ICC as a screening tool. We need more doctors to know how to identify the ME patients using the ME-ICC & ME-IC Primer so these researchers have a ready supply of cohorts. Researchers need to know they can't rely on the G93.32 code to do research into ME.

 

Thank you for posting this, Suzy. For everyone, I've included additional context below on the US ICD issue and its impact, what the orgs actually proposed, and what CDC then recommended.

@Colleen Steckel - As you know, the CDC stopped using Fukuda for clinical diagnosis in 2017 when it implemented IOM. Many other medical education providers followed suit. Acknowledging the transition can be imperfect and take time, I'd expect that more recent cases of CFS in US electronic health records were based on the IOM, not on Fukuda. But regardless of what definition was used, the vast majority of US cases were buried in the code for the symptom of chronic fatigue, unspecified.

Regarding identifying cases in research - I completely agree with your example that continuing to use Fukuda to identify cases for research is a problem


Background on the ICD issue, what the orgs requested and what CDC then recommended.
As a reminder to everyone, the US ICD-10-CM was unique in that it had reclassified CFS, the diagnosis used in the US, to the symptom chapter and equated it to the symptom of chronic fatigue. This was a unilateral change implemented in 2015. ICD-10 and all other clinical modifications of ICD-10 used in other countries classified both ME and CFS in the neurological chapter at G93.3

US docs could use the code G93.3 for ME but they rarely do. And no ICD-10 has a code for the term ME/CFS.

As a result, since 2015, US cases of ME/CFS have been invisible to US morbidity and mortality tracking systems, to studies assessing disease burden and healthcare utilization and costs and in research using electronic health records, including that for Long COVID. This situation was unacceptable.

Please note that the 7 organizations' request was for the most basic change to move this forward - just to add the term ME/CFS and expand the title term "post-viral fatigue syndrome" to encompass non-viral causes. The National Center for Health Statistics, the CDC group responsible for the ICD-10-CM, then added additional changes which resulted in the updated listing noted above.

For additional context on the issues and impact of the current situation, what the organizations actually requested, and what CDC then implemented, see this blog post, titled "The Coding Problem: Why No American Can Develop ME/CFS, Including After COVID"

 

A little more on the "Excludes1: chronic fatigue syndrome NOS (R53.82)" anomaly:

The FY 2023 Addendum documents for the Tabular List collates only the changes for the 2023 release:

https://www.cdc.gov/nchs/icd/Comprehensive-Listing-of-ICD-10-CM-Files.htm


In the screenshot below, are the changes listed in the Addendum document for the Tabular List for both G93.3 and R53.82.

Note that under G93.3, there is only one code specified as an "Excludes1" and that is: neurasthenia (F48.8).

Note also that under R53.82, the legacy ICD-10-CM term, "chronic fatigue syndrome NOS" is specified as having been deleted.

Whereas, in the full Tabular List, as published by CDC yesterday, although "chronic fatigue syndrome NOS" has been deleted from under R53.82 (as per the Addendum), an Excludes1 for "chronic fatigue syndrome NOS" has been retained under G93.3.

ICD-10 convention-wise, this makes no sense to me, since you cannot exclude a coded term unless that coded term appears listed in the Tabular List or in the Index. There is an email address for reporting errors and I will raise this apparent anomaly in the PDF for the Tabular List.*


Extract: Addendum document Tabular List FY 2023:



*Any questions regarding typographical or other errors noted on this release may be reported to nchsicd10cm@cdc.gov .

 

By email To: nchsicd10cm@cdc.gov

11 June 2022

To whom it may concern:

I would like to report an apparent error or oversight in the FY 2023 release of ICD-10-CM:

The Addendum for FY 2023 Tabular List specifies that the ICD-10-CM legacy term "chronic fatigue syndrome NOS" is Deleted from under "R53.82 Chronic fatigue, unspecified" for the 2023 release:


Extract FY 2023 Addendum:



However, the PDF for the full Tabular List includes "chronic fatigue syndrome NOS" as an Excludes1 under G93.3, in addition to "neurasthenia (F48.8)". This appears to be a potential error or anomaly, since there is no longer any reciprocal listing of the term, "Chronic fatigue syndrome NOS" under R53.82 in the Tabular List, nor under R53.82 in the Index, as far as I can see.

Should the Excludes1 have been for "chronic fatigue, unspecified (R53.82)" rather than "chronic fatigue syndrome NOS" as has been published in the Tabular List, on Page 354?

I shall be pleased if you will look into this.

Extract FY 2023 Tabular List:




Sincerely,

Susan Chapman

 

Yes, this was not as presented at the meeting and appears to be an error

Thank you for investigating and reporting, Suzy.

 

Article posted today by #MEAction:

U.S. Healthcare Coding Revisions Enable Tracking of ME/CFS Cases

https://www.meaction.net/2022/06/13/u-s-healthcare-coding-revisions-enable-tracking-of-me-cfs-cases

 

From the quote in post 591...

This is welcome for US patients obviously. But just think how much history of the condition in a patient will be missing.

 

I have received a response from Traci Ramirez, CCA- Medical Classification Specialist, ICD-10-CM Classification Team.

Ms Ramirez says:

Thank you for your e-mail. The change you are reporting as an error is not an error. It is correct. This was presented at the September 2021 C&M meeting.

The inclusion term of Chronic fatigue syndrome was moved to be included in the new code:

G93.32 Myalgic encephalomyelitis/chronic fatigue syndrome
Chronic fatigue syndrome
ME/CFS
Myalgic encephalomyelitis​

Regards etc​

--------------------------

I have written again...

 

Can you explain your point further?

I don't understand and I'm sure I'm missing something important. Thanks!

 

I'm not sure if this is important, and I may have got the wrong end of the stick somewhere.

I was just thinking that people in the UK who have been diagnosed with ME and have had it recorded in their medical records will also (probably) have a history of visits to their doctors before and after diagnosis of ME looking for help with their symptoms. They may have a good idea when their ME began. They may have other diagnoses from before and after they were diagnosed with ME.

But if someone in the US has a diagnosis of ME recorded when this coding change is made in October 2022, but has been ill with it for 15 years, none of that history information available in the UK from UK patients will be available to anyone from US patients in the US. For example, how can anyone start to collect statistics on symptoms, locations of patients, other diagnoses while they were ill if ME isn't recorded until October 2022? None of that past history will be available in connection with ME. This will make any studies of it using US data rather poor.

 

Presumably the actual text written in the diagnosis is still in the system also so the person's doctor should know that history. But you are correct from the perspective of reporting systems and research using electronic health records.

In the US, the term ME has rarely been diagnosed and instead, doctors diagnose CFS. But CFS is given the same term as the symptom of unspecified chronic fatigue. So the cases of ME/CFS are lumped together with and labeled as unspecified chronic fatigue in reporting and EHR research.

ETA - a recent publication EHR records of Long COVID patients reported the symptom of "malaise and fatigue" as one of the commonly reported conditions. That category includes unspecified chronic fatigue, which likely includes cases of ME/CFS. The researchers would have had to go through medical records to determine that.

 

I have received a further response from Traci Ramirez, CCA- Medical Classification Specialist, ICD-10-CM Classification Team.

Ms Ramirez says yes, thank you, this is an error and it should be deleted; and that she will add the following to the September 2022 C&M meeting addenda.



I still don't think she has this right.

Surely the correction is to Delete

Excludes1: chronic fatigue syndrome NOS (R53.82)

from under G93.3 in the PDF of the Tabular List

and Replace with

Excludes1: chronic fatigue, unspecified (R53.82)
neurasthenia (F48.8)

as per the September '21 proposal?

 

Thanks, Suzy

I've contacted her as well. Will let you know what I hear

 

Thank you. I've set it out twice now (with screenshots), but I'm not confident Ms Ramirez sees the issue.

 

I'm a bit confused with the category: G93.39 Other post infection and related fatigue syndromes

Why does it jump from G93.32 to G93.39 ad what is this category supposed to include?