ICD-11 status reports: G93.3 legacy terms: PVFS, BME, CFS

[Dx Revision Watch]

Dr Jakob is very familiar with the G93.3 terms, having been called upon over the years to issue clarifications in response to attempts by a WHO Collaborating Centre to blur the boundaries between a number of ICD-10 classifications, and in several reported instances, having swapped the G93.3 code for F48, because it suited their purpose to do so.

Dr Jakob knows very well that in ICD-10, there is a Fatigue syndrome inclusion under F48.0 Neurasthenia which has an Excludes for G93.3. He also knows that in ICD-10 under Malaise and fatigue there is also an Excludes for G93.3.

He knows there is no "chronic fatigue" category within ICD-10.

He knows that the three ICD-10 legacy terms for which information is being sought are:

Postviral fatigue syndrome
Benign myalgic encephalomyelitis
Chronic fatigue syndrome

He knows there is no Fatigue syndrome in ICD-11 Beta because the Neurasthenia category is retired for ICD-11. Bodily distress disorder subsumes and replaces most of ICD-10's somatoform disorders and Neurasthenia.

He knows that for ICD-11, Malaise and fatigue in the Symptoms, signs chapter has been changed to "Fatigue" and that there are no child categories sitting under "Fatigue."

But he appears to be having a lot of trouble articulating the names of the G93.3 legacy terms.

Whenever I write to ICD Revision or about ICD Revision, I am always precise. I always set out the three category terms that I am enquiring about because these are the "Concept Title" and "entity" terms, as classified within ICD-10:

Postviral fatigue syndrome
Benign myalgic encephalomyelitis
Chronic fatigue syndrome

But what do I get back from Dr Jakob, these days?

"Further to our earlier correspondence and phone calls, including contacts with other parties linked to chronic fatigue, I reiterate that WHO appreciates the work that you and others have put in to chronic fatigue. So far, you submitted 6 proposals linked to 3 entities on the proposal platform. All were submitted in time to be addressed for the field testing version that will be released on 4 of April."​

And what is the response he gives to the Department of Health to inform Lord O'Shaughnessy's Written Response to the Countess of Mar:

"...The WHO has also confirmed that the proposal submitted for chronic fatigue is currently with the relevant groups of the organisation to consider the scientifically-based placement of this condition in the classification. This will be included in the next version of ICD-11 to be released on 4 April 2017 for field testing."​

To reiterate: I have had no correspondence with ICD Revision in relation to "chronic fatigue". I have put in no work on "chronic fatigue" whether appreciated or not.

I have submitted no proposals for "chronic fatigue" which are currently with ICD Revision groups or work groups for their review and consideration.

 

[Hajnalka]

This is frightening! I'm in the process of fighting with my insurance and the only fact I had to back my claim up that ME is a physical disease, was the WHO. The insurance treats my diagnosis as a joke and its medical advisers wrote a report that ME is never physical. All I could do was tell them that they are obliged to follow the WHO classification and that it's simply not allowed to classify ME as psychosomatic. If we loose this classification, we would be on our own.

On another note, the Charite in Berlin (small ME-research team) proposed to DIMDI (the German institute for the implementation of the WHO codes) to officially remove the worst German translation of CFS (the term ME is not used): It's mostly not even called "chronic exhaustion syndrome" here but "chronic tiredness syndrome" (that's what my GP attests me every month despite my official diagnosis and I'm never tired). More fitting translations would be a first step in Germany (but of course useless if the whole disease while be re-classified as not physical by the WHO).

 

[Dx Revision Watch]

On March 1, I wrote the following in response to an email from Dr Jakob:

Dear Dr Jakob,

Thank you for your response to my email of January 19, in which I had concluded:

"Stakeholders have been very patient waiting for proposals to be released. But there are considerable concerns, internationally, that there is now very little time left before ICD-11 is finalised for presentation in May 2018 in which to review and comment on proposals."

I note that you have referred to "chronic fatigue". I should point out that the ICD-10 legacy terms for which I have submitted proposals for Exclusions are: (Benign) myalgic encephalomyelitis; Chronic fatigue syndrome; and Postviral fatigue syndrome.

I trust the research papers and other materials provided by me, in July 2015, to inform the revision process were of interest to TAG Neurology.

I appreciate your advice regarding the potential submission of additional proposals. I shall be submitting a proposal via the Proposal Mechanism in relation to the issue of nomenclature and "Bodily distress disorder" later today, and I hope the important observations within my rationale will be given consideration.

As far as additional proposals for the three G93.3 legacy terms are concerned, it is possible that proposals will be submitted before the March 30 deadline.

However, the issue that concerns me most (and stakeholders, internationally) is that my emails of February 6, 22 and 23 have not received a response from the co-chairs of the Joint Task Force.

Dr Chris Chute told me on February 6 that the matter of the missing G93.3 legacy terms in the Beta draft and continued absence of the release of proposals from TAG Neurology was discussed at the JTF meeting in Cologne, on the Wednesday.

In my email of February 6 (copy attached for ease of access) I had asked whether the JTF would expedite release of TAG Neurology's proposals and stressed that there are considerable concerns that with less 5 weeks before the March 30 deadline, stakeholders have been given no indication, in four years, of TAG Neurology's intentions for these terms and have had no opportunity to review and comment on their proposals.

Additionally, any proposals submitted by stakeholders (or by Member States for that matter) do not have the benefit of the context of TAG Neurology's own proposals for these terms to inform any proposals they may wish to submit.

With all due respect, no-one within ICD Revision appears to want to acknowledge that no proposals have been published by the TAG, itself, in the four years since those terms were inexplicably removed from the public version of the Beta draft.

Dr Chute has said that his understanding is that TAG Neurology are planning to [redacted as information is unconfirmed].

Since this information is vague (it is unclear whether Dr Chute is referring to all three terms or to selected of the three terms); since it may be incomplete, and since it has not been confirmed by the JTF co-chairs, I am electing not to publish that information.

Additionally, if the intention is to [redacted as information is unconfirmed], Dr Chute has given no information about which chapter and parent code(s) TAG Neurology would point these terms to - if his information is correct.

So I would like to ask for transparency from ICD Revision:

a) what are TAG Neurology's intentions for the G93.3 legacy terms?

b) are the JTF/TAG prepared to release its proposals for these terms before the March 30 deadline and by what date do you intend to release them by?

Sincerely,

Suzy Chapman

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

Dr Jakob's response:

"WHO appreciates the effort you are putting into this, and all relevant points are noted on the platform for processing. If there are points that need discussion, you should post them on the platform.

"I trust that the past ample correspondence and the website do provide clear information about the procedures and timelines. Your earlier proposals had been submitted in time."

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

So, no clarity, no confirmation or denial and my question to the Joint Task Force: In the context of the March 30 proposals deadline, by what date will comments on proposals be required to be submitted for consideration? goes unanswered, too.

There would be no need for "ample correspondence" as he calls it, if questions were answered. The Beta draft and ICD Revision website has no information on the date by which comments on proposals will need to be in by.

So he is misinformed about that, too.

 

[Dx Revision Watch]

This is frightening! I'm in the process of fighting with my insurance and the only fact I had to back my claim up that ME is a physical disease, was WHO/DIMDI. The insurance treats my diagnosis as a joke and its medical advisers wrote a report that ME is never physical. All I could do was tell them that they are obliged to follow the WHO classification and that it's simply not allowed to classify ME as psychosomatic. If we loose this classification, we would be on our own.

On another note, the Charite in Berlin (small ME-research team) proposed to DIMDI (the German institute for the implementation of the WHO codes) to officially remove the worst German translation of CFS. It's mostly not even called "chronic exhaustion syndrome" here but "chronic tiredness syndrome" (that's what my GP attests me every month despite my official diagnosis and I'm never tired). This would be a first step in Germany (but of course useless
if the whole disease while be re-classified as not physical by the WHO).

Joh, Dr Robert Jakob and Dr Geoffrey Reed have both confirmed that there is no proposal and no intention to classify the G93.3 terms under Mental or behavioural disorders. But I am very concerned that they may be considering relocating one or more of the terms under the Symptoms, signs chapter.

But again, the Joint Task Force has been asked to clarify whether this is the intention and so far it will not answer that question and neither has Dr Jakob.

 

[Chrisb]

It appears that it is hoped that all relevant points will posted on the platform only after the train has left.

 

[Dx Revision Watch]

It appears that it is hoped that all relevant points will posted on the platform only after the train has left.

Absolutely.

 

[Dx Revision Watch]

Raad Shakir, Chair of TAG Neurology, is President of the World Federation of Neurology (WFN)

World Neurology is the Official Newsletter of the World Federation of Neurology (WFN)

World Neurology ran this report in June 2015:

Author, Maggie L. McNulty, is an assistant professor at Rush University Medical Center, Department of Neurological Sciences.

http://worldneurologyonline.com/art...igue-syndrome-a-new-name-diagnostic-criteria/

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A New Name & Diagnostic Criteria


Posted on June 10, 2015


Maggie McNulty

At the very end of this report, Dr McNutly writes:

"It is critical that we do our part to help stop the stigma associated with this condition and provide optimal care of these patients."


On February 26, I left a comment about the lack of transparency from ICD Revision and TAG Neurology for the proposed classification of the ICD-10 G93.3 legacy terms for ICD-11. It's still sitting in moderation.

 

[Dx Revision Watch]

....Are they removing PVFS, BME, CFS from the ICD?

Having said that we currently have no information on TAG Neurology's proposals for these three terms, I will add the following reasons why I consider it unlikely that ICD Revision would approve a TAG proposal not to include these terms within ICD-11:

1 The three terms are included within SNOMED CT International Edition and the various SNOMED CT country extensions. The owners of SNOMED CT and WHO/ICD Revision are in the process of preparing mappings from SNOMED CT to ICD-11. In order to directly map SNOMED CT diagnostic categories and codes for these terms across to ICD-11, the terms would need to be represented somewhere in the classification. The UK is adopting SNOMED CT across all NHS clinical settings by 2020.

2 Unlike the overnight October 1, 2015 implementation of ICD-10-CM in the US, there will be no mandatory implementation date for ICD-11. Member States will transition to ICD-11 at their own pace and it will likely be several years before all Member States have prepared for and implemented the transition.

In the meantime, Morbidity and Mortality statistics will continue to be collected using ICD-10 codes, although at some point in late 2018 or 2019, WHO will start to accept data collected using the new ICD-11 codes. So there will be a period of several years overlap between the two editions during which statistics based on codes from both editions will be collected and presumably aggregated. ICD-11 requires continuity, where possible, with ICD-10.

3 The recommendations of the TAGs are advisory only. So if a TAG were to suggest retiring a category (or categories) or suggested a chapter relocation which the JTF or WHO classification experts do not approve of they can override the TAG's suggestions.

It may be pertinent that Dr Jakob appears overly invested in encouraging organizations and advocates to make use of the Proposals Mechanism. Dr Jakob, himself, perhaps does not approve of the TAG's proposals - but I don't know because this has not been publicly discussed.

(The views of ICD Revision and JTF on other categories where there has been a lack of consensus between TAGs, JTF and professional medical bodies are discussed and minuted at meetings of the JTF and also during teleconferences of the WHO-FIC Network Council Small Executive Group, whose agendas and meeting summaries are publicly posted.)

4 Several countries use "clinical modifications" of ICD-10 (Canada, US, Australia, Germany) and these countries will continue to use their adaptations, which all include all three terms within their Tabular Lists (apart from Australia) for a number of years to come until they have also prepared, tested and implemented their country specific modifications of ICD-11. Additionally, the clinical modifications are planned to be incorporated into the ICD-11 platform as sub linearizations.

So purely from the aspect of continuity of future data recording, backward comparability with ICD-10 (which will continue to be used for some years), and the mapping of SNOMED CT to ICD-11, it would not be very practical for statistics recording to retire one or more of the terms for ICD-11.

And that is without consideration of the wide use of at least the CFS term in clinical and research settings.

So no, I don't think TAG Neurology has proposed to remove the terms for the next edition, but I think there is a possibility that they are proposing not to retain them within the Diseases of the nervous system chapter.

Which leads me to consider whether the TAG (we should not use "they" because WHO and JFT can override TAG's proposals) may be proposing this:

Example only:

Chapter: Symptoms, signs or clinical findings, not elsewhere classified
>General symptoms, signs or clinical findings
>General symptoms
>Fatigue

Add: New uncoded Parent class or coded Concept Title: Chronic fatigue
Add: Chronic fatigue syndrome (either uniquely coded or as inclusion to above)

which would give this hierarchy

>General symptoms
>Fatigue
>Chronic fatigue
>Chronic fatigue syndrome

Inclusions:
?

Synonyms
?

which would be similar to the controversial listing of "CFS NOS" under the Symptoms, signs chapter in the US specific, ICD-10-CM, which has this structure:

Chapter: Symptoms, signs or clinical findings, not elsewhere classified

R53 Malaise and fatigue

(...)

R53.82 Chronic fatigue, unspecified
> Chronic fatigue syndrome NOS

Excludes1: postviral fatigue syndrome (G93.3)


But until TAG Neurology releases its proposals this is speculation.

 

[ScottTriGuy]

Frightening.

On a global scale.

Thanks for the excellent continued updates Suzy.

And especially thank you for pushing hard for clarification and transparency.

 

[Dx Revision Watch]

Frightening.

On a global scale.

Thanks for the excellent continued updates Suzy.

And especially thank you for pushing hard for clarification and transparency.

Thank you, Scott.

I just wish it wasn't necessary. It shouldn't be necessary.

I cannot imagine, for example, a TAG inexplicably removing the listing for multiple sclerosis (MS) from the Foundation and MMS draft; publishing no proposals for 4 years; running its release of proposals very close to a deadline (or not releasing until after that deadline has been reached) and treating polite, informed enquiries from advocates and registered stakeholder orgs in the cavalier manner in which our enquiries are currently being fielded.

 

[alisonorr]

Thanks for all your hard work. This is very worrying...

 

[JoanDublin]

Whatever the outcome Suzy, you deserve a hero's accolade for perseverance in the face of deliberate and sustained obfuscation. Is there anything anyone else can do at this point to put additional pressure on Robert Jakob?

 

[Dx Revision Watch]

Whatever the outcome Suzy, you deserve a hero's accolade for perseverance in the face of deliberate and sustained obfuscation.

Thank you, Joan.

Is there anything anyone else can do at this point to put additional pressure on Robert Jakob?

I don't think so, Joan. There are other strategies in motion which I am not in a position to discuss at the moment.

Something which people could do is to prepare for release of proposals.

When TAG Neurology does release its proposals (and I trust, rationales for its proposals), these should be uploaded to the Beta draft Proposals Mechanism, rather than being inserted directly into the draft.

But in order to access the Proposals Mechanism it is necessary to register with the Beta draft. You won't be able to review Proposals or comment on them, if you wish to comment, if you are not registered.

So I would suggest that individuals, clinicians, researchers, reps for patient organizations who may want to review and comment register with the draft now.

You can create an account for access from this page:

http://apps.who.int/classifications/icd11/browse/Account/Register?returnUrl=/classifications/icd11/browse/f/en

Once registered and logged in, you can view latest proposals for all categories as they are submitted and track their colour coded progress through the review process (Submitted; Implemented; Partially implemented; Rejected; With WHO etc) here:

http://apps.who.int/classifications/icd11/browse/proposals/f/en/ProposalList

There is a User Guide here:

http://apps.who.int/classifications/icd11/browse/Help/en

Print Versions here:

http://apps.who.int/classifications/icd11/browse/l-m/en/Printables

Linearization downloads (and a link to the Frozen Releases page) here:

http://apps.who.int/classifications/icd11/browse/downloads


Meanwhile...

New Concept Title for ICD-11:

Persistent obfuscatory response disorder

Optional specifiers
> Persistent obfuscatory response disorder with fair to good insight
> Persistent obfuscatory response disorder with poor to absent insight


Edited to insert image:

The colour coded tracking labels look like this, example below is my own list of proposals:

 

[ScottTriGuy]

So I would suggest that individuals, clinicians, researchers, reps for patient organizations who may want to review and comment register with the draft now.

Done!

 

[Tilney]

Thank you for all your hard work.

It has been wonderful to discover this forum with so many people who don’t have “CFS/ME” helping those that have diagnosis “CFS/ME”

I am not a fan of conspiracy theories but –

If “CFS/ME” were to be classified as a “psychiatric” condition it would mean that millions of pounds & man hours, reports & studies etc. have not been wasted.

Therefore, the medical profession has been correctly treating “CFS/ME”


If it is discovered in the future - it could be roughly the same time as someone publishes their diagnostic test & cure – that a very very very large percentage of people with “CFS/ME” also have a previously undiagnosed co existing condition that is now has a diagnostic test & is treatable/curable the medical profession is still correct in their previous treatment “CFS/ME”.

 

[Dx Revision Watch]

NHS Digital has produced quite a useful overview of ICD-11 on this page here:

https://sway.com/ADbCPTecRhtlDb4U

ICD-11 Overview

Beyond the section "Definitions" it is of more specific interest to coders, but the first half of the document is worth a skim if you are interested in the purpose, structure and features of ICD-11.

(It's on the SWAY document platform and may take a few seconds to load.)

 

[JoanDublin]

Thanks for all that info Suzy. I'm now registered. I will be on a very steep learning curve on this one!

 

[Dx Revision Watch]

Thanks for all that info Suzy. I'm now registered. I will be on a very steep learning curve on this one!

The Beta drafting platform and the Proposal Mechanism are not very user friendly.

For the Beta draft, itself, some people accessing the browser have missed that there are two views:

The landing page:

http://apps.who.int/classifications/icd11/browse/f/en#/

which opens in Foundation view.

The Foundation lists all the chapters, all the parent classes and all the category terms that sit underneath them (though there are additional terms in the Index). The Foundation will be known as Volume 4.


From the Linearizations tab, you can open the Mortality and Morbidity Statistics listings view (MMS). This is a sub linearization (or sub set) of the Foundation and it doesn't contain all the terms that are listed in the Foundation; it also contains less descriptive content.

The MMS is the equivalent to ICD-10's Volume 1: Tabular List and it will be known as Volume 1:

http://apps.who.int/classifications/icd11/browse/l-m/en#/

When you have a category open, you can toggle between the two views.


Locating Proposals

Once you have registered, there are several ways of locating proposals that are waiting to be reviewed or commented on. I'll set out just two methods, using my own proposals as examples:


Easiest method: Method 1 for locating a Proposal in the Proposal Mechanism:

If you have been given the URL for a Proposal, then go straight to it (as long as you are registered and have logged in).

This is the URL for my March 1 submission proposing the Deletion of Bodily distress disorder:

http://apps.who.int/classifications...lGroupId=c321880e-aa46-4328-ac19-7153c5e7a364

and as a TinyURL:

https://tinyurl.com/ICD11BDDsubmission


As you'll see, it's marked with the Yellow "Submitted" label, so it hasn't been Reviewed, Approved, Implemented or Rejected yet.

My formal submission for Deletion of an entity can be found under the Definition text, under heading

Rationale



If TAG Neurology's proposals are published via the Proposals Mechanism (which they should be), I will make sure that the URL is posted prominently in this thread and I will also create a TinyURL for it. I will also edit the URL into the top of the first post in this thread, with a simple, step by step for leaving comments.

Organizations who wish to comment on proposals should not send their comments directly to the Joint Task Force. The Joint Task Force will only redirect them to use the Proposals Mechanism for leaving comments on behalf of their organization.


Method 2:

Go to the Foundation landing page:

http://apps.who.int/classifications/icd11/browse/f/en#/

Look for the Chapter: Mental, behavioural or neurodevelopmental disorders

Open the grey dropdown.
Open the grey dropdown for Bodily distress disorder.
Click on Bodily distress disorder (which will open a descriptive content panel on the right).


If any category in the listings has had Proposals submitted for it there will be a blue vertical Proposals! tab on the far right - like so:

If an orange tab displays instead, this means that any proposals have already been Implemented (that is, approved and inserted into the Beta draft listings or that there are currently no proposals for that term, other than what displays in the listing).

The green ICD-10 button cross maps to the nearest equivalent code in the ICD-10 Version: 2016 browser.



Click on the blue Proposals! tab.

This opens a page listing all proposals submitted so far for Bodily distress disorder listed in date order.

Select which one you want to view and open the Proposal.


Commenting on Proposals

At the end of all proposals, there will be a comment box under the light brown heading:

Comments on this proposal

You can leave a comment to any Proposal, but first some caveats:

It is Plain Text and there is no facility for editing your comment once it has been submitted. So once you have clicked Send your comment that's it; you won't be able to edit typos or add additional text to it and you won't be able to delete it, either, if you have screwed it up.

So it's best to draft your comment first in Notepad, a word processor or on a draft email and when you are happy with your text, paste your text in. Add a reference list at the end of your comment in support of statements in your text, if you can.


Comments are screened by ICD Revision admin and may be removed if considered inappropriate. A registered user can also be blocked by admin.

Submitted Proposals are also screened by ICD Revision admin before being forwarded on to the appropriate Topic Advisory Group (or groups, if more that one TAG has responsibility for a category) or they may be forwarded on to the Joint Task Force or Revision Steering Group.


Notes:

It would have been better if no registration had been required in order to view every part of the Beta draft and the Proposal Mechanism, with registration only for submitting proposals and commenting on proposals.

I've just checked the number of "Submitted" proposals that have not yet been processed and there appear to be in the region of 800. Mostly from TAG groups, but others from stakeholders.

Many of these will be simple additions of a new category, for example, a dermatology condition uploaded by the managing editor for TAG Dermatology, which will be rubber stamped. Others are for complex restructuring of category blocks, for example the Proposals for Chronic pain and Chronic primary pain.

 

[Dx Revision Watch]

Thank you for all your hard work.

It has been wonderful to discover this forum with so many people who don’t have “CFS/ME” helping those that have diagnosis “CFS/ME”

Thank you, Tilney.

 

[Dx Revision Watch]

Bearing in mind that:

a) the deadline in order for proposals to be considered for the final version is 30 March 2017.

b) a (presumably frozen) version of ICD-11 is expected to be released on 4 April 2017, for field testing.

c) the Written Response to the Parliamentary Question tabled by the Countess of Mar (27 February 2017) had stated, "The WHO has confirmed that the latest version of the 11th Revision of the International Classification of Diseases (ICD-11) includes the Topic Advisory Group for Neurology’s proposals."

I have noted a new communication, this afternoon, from Dr Robert Jakob.

Dr Jakob has left a comment on the Proposals Mechanism in response to the proposal which I had submitted on 30 December 2014 for the insertion of Exclusions under Concept Title: Fatigue for (Benign) myalgic encephalomyelitis; Chronic fatigue syndrome; Postviral fatigue syndrome.

work is still progressing to identify the correct place in the new structures of ICD-11

Robert Jakob, WHO 2017-Mar-10 - 16:05 UTC
​