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

[Dx Revision Watch]

***********************************************************************************************
Edited to add two summary posts on Dx Revision Watch site:

Two ICD-11 G93.3 updates on Dx Revision Watch:

A proposal for the ICD-10 G93.3 legacy terms for ICD-11: Part Two http://wp.me/pKrrB-4eH
http://wp.me/pKrrB-4eH

and for background to the proposal:

A proposal for the ICD-10 G93.3 legacy terms for ICD-11: Part One http://wp.me/pKrrB-4dV
http://wp.me/pKrrB-4dV
http://wp.me/pKrrB-4dV
*************************************************************************************************

Update on status of ICD-11 for the G93.3 ICD-10 legacy terms

The revision of ICD-10 and development of the structure for ICD-11 and its associated publications launched in 2007.

The original dissemination date for ICD-11 had been projected for 2012. This was rapidly revised to 2015, then postponed to 2017 and is currently 2018. The scope of the project has been scaled back but there is still a great deal of work to be completed.

The revision was being overseen by a Revision Steering Group. In 2015, the ICD-11 MMS Joint Task Force was assembled to oversee the finalization of ICD-11.

The project remains underfunded and under resourced and the Joint Task Force is struggling with the workload required to release a stable version of ICD-11 in 2018.

There is the possibility of a further postponement. But until any announcement is made by WHO, it should be assumed that the date of 2018 stands.

The WHO is intending to present an incomplete version of ICD-11 to the WHA in May 2018. The WHO won't be seeking endorsement from WHA until later, but plans to release a version of ICD-11 at some point after May 2018.

No firm date has been issued and it is unclear how many of the associated publications, for example, the print editions for the specialty versions (which will include Neurology) or the abridged Primary Care version of the Mental or behavioural disorders chapter (ICD-11 PHC), will be ready by then.


No mandatory implementation date

Once released, Member States will need to evaluate ICD-11 and begin to plan for transition from ICD-10. This will take most countries several years. It is likely to take longer for those countries who use a modification of the ICD, for example the USA and Canada, to develop modifications of the new edition. There is no mandatory implementation date and Member States will transition at their own pace and in the meantime, ICD-10 will continue to be used for data reporting.


Proposals deadline

• There is a deadline of March 30 for consideration of proposals from the various working groups that were assembled in 2008 to work on revising ICD chapters for ICD-11.

Dozens of proposals for new and existing terms are being uploaded to the Beta draft daily, which will all need processing.

According to the newsletter: ICD-11 Update, January 2017:

"Proposals that are received between 1 January 2017 and 30 March 2017 will be taken into account for the final version for implementation. Proposals received after that date will be considered in the context of ICD-11 maintenance after 2018."​

(Comments by Member States and improvements arising as a part of the Quality Assurance mechanism will be included with deadlines later in 2017.)


"It will be all over by Christmas..."

In June, 2015, I had a teleconference with Dr Robert Jakob, facilitated by Project Manager, Anneke Schmider. During our discussions, Dr Jakob advised me that he anticipated Topic Advisory Group (TAG) Neurology would release their proposals for the classification of the G93.3 legacy terms in September 2015, and if not ready by September, then by "December 2015, at the latest" - thereby allowing time for stakeholder scrutiny and comment prior to finalization.

In July 2015, Mary Dimmock and I provided Dr Jakob, with his agreement, a number of reports, research study references, conference presentations and other materials to be passed to TAG Neurology to inform the process.

However, no proposals and rationales for proposals have been published by TAG Neurology via the Proposal Mechanism, or entered into the Beta draft or released by any other means, and the terms remain unaccounted for in any chapter and any linearization of the public draft.


How the draft had stood in early 2013

In early 2013, when the three terms were last seen in the Beta draft, the proposal had been for CFS to become the new lead code term, with BME specified as the inclusion term, and with PVFS under Synonyms.

(I have screenshots tracking the revision of these terms in the iCAT, Alpha and Beta phases up to early 2013, which I shall add to the thread later.)

However, it was unclear at the time under what parent term these were proposed to sit or whether it was proposed to locate the terms under a different chapter. All three terms were subsequently taken out of the public version of the draft and there have been no progress reports since.

• The G93.3 legacy terms have now been missing from the public version of the Beta draft for four years.

• Until TAG Neurology releases its proposals for these legacy terms, stakeholders are unable to review, comment on or input into TAG proposals for chapter location(s), parent class(es), hierarchies, or Content Model parameters.

• Nor is is possible for stakeholders to submit proposals for Exclusions for these terms under other diagnostic categories, since these entities do not currently appear in the draft.

During the course of the last four years, numerous stakeholders have approached ICD Revision requesting updates on proposals for these three terms, including a Scottish Health Directorate, an English MP on behalf of the All Party Parliamentary Group on M.E., a member of the House of Lords, several UK registered patient organizations, an international alliance of organizations representing the interests of patients in 13 European countries, and stakeholder advocates.


Request that Joint Task Force expedite release of proposals

I was aware that the Joint Task Force (JTF) had a three day meeting scheduled for 20-22 February, in Cologne.

I wrote to the JTF on February 6 and requested that the absence of TAG proposals for these three terms was tabled for discussion at a Joint Task Force meeting with the objective of expediting the release of TAG Neurology's proposals prior to March 2017.

This would give stakeholders the opportunity to review and comment on proposals while there is still time, and in order that ICD-11 is inclusive of stakeholder participation in the revision process.

A number of international patient organizations were approached and asked if they would also contact those JTF members in their own countries in support of my call for the urgent release of TAG Neurology's proposals.

16 international organizations have confirmed that they have done so and I would like to publicly thank them for their support with this.


Continued lack of transparency

To date, I have received no response from the JTF co-chairs to my initial letter of February 6, or two follow up letters on February 22 and 23.

Some organizations did receive responses from members of the JTF, but none from the co-chairs.

It was confirmed in one of these responses that I had been successful in getting the matter discussed at the Wednesday, February 22 meeting, but no information was given about the outcome of that discussion.

Some vague information was given in one response but it is unconfirmed, may be incomplete and may not be up to date; I cannot rely on this information until the co-chairs of the Joint Task Force have fully clarified the current proposals for these terms.


Parliamentary Written Question

At the weekend, I approached the Countess of Mar with a briefing on the situation and a suggestion that possibly a Parliamentary Written Question might force the information we require into the public domain.

Lady Mar confirmed last night that she had tabled a Written Question on Monday and it was published overnight. I will post a copy in the next post.

I have some further posts to add to this thread but I need to edit a document today so I will add these to the thread on Wednesday.

Suzy Chapman

 

[Dx Revision Watch]

I am given to understand that the Department of Health has two weeks in which to provide a response.

Countess of Mar Parliamentary Written Question

http://www.parliament.uk/business/p...iontype=QuestionsOnly&house=lords&member=1861

Neurology: Written question - HL5683

Asked by The Countess of Mar

Asked on: 27 February 2017

Department of Health

Neurology

HL5683

To ask Her Majesty’s Government whether they will ask the Joint Task Force responsible for overseeing the finalisation of the World Health Organisation International Classification of Disease ICD–11 to release, as a matter of urgency, the proposals of the Neurology Topic Advisory Group (Neurology TAG) for the classification of the ICD–10 G93.3 legacy terms for ICD–11.

 

[Dx Revision Watch]

Copy of letter to ICD-11 MMS Joint Task Force, February 6, 2017


To: Dr Stefanie Weber; Dr James Harrison (Co-Chairs, ICD-11-MMS Joint Task Force)

CC: Ms Linda Best; Dr Molly Meri Robinson Nicol; Dr Robert Jakob; Ms Anneke Schmider; Ms Lori Moskal (WHO)

And for the Attention of:
Christopher G. Chute, MD, DrPH; Ms Vera Dimitropoulos; Dr Robert Anderson; Ms Anne Elsworthy; Dr Lars Berg; Mr James Eynstone-Hinkins; Dr Vincenzo Della Mea; Ms Jenny Hargreaves; Ms Kaori Nakayama; Dr Kees van Boven; Ms Emiko Oikawa; Dr Martti Virtanen; Ms Donna Pickett; Mr Ulrich Vogel; Ms Patricia Wood (Members, ICD-11-MMS Joint Task Force)

Solvejg Bang, MD; Dr Robert Chalmers; Dr Richard Madden; Dr Sam Notzo; Ms Yukiko Yokobori (JFT Observers)

February 6, 2017

Dear Dr Weber and Dr Harrison,

Re: Request for item to be added to meeting Agenda, ICD-11-MMS Joint Task Force

This is a request for the following ICD-11 related matter to be added to the Agenda of the next JTF meeting or teleconference:

The classification for ICD-11 of the legacy entities coded to G93.3 in ICD-10 is the purview of TAG Neurology (Chair: Raad Shakir, Imperial College London; Chapter editor: Tarun Dua, WHO, Switzerland).

In February 2013, the terms: Chronic fatigue syndrome; Benign myalgic encephalomyelitis; Postviral fatigue syndrome and a number of associated Synonyms terms were removed by ICD Revision from the public version of the Beta draft.

There are no "Change Histories" or "Discussion Notes" visible in the public version of the Beta platform and therefore no rationale has been publicly available for the removal of these terms in early 2013.

• The G93.3 legacy terms have now been missing from the public version of the Beta draft for four years.

On June 19, 2015, I had a teleconference with Dr Jakob, facilitated by Ms Schmider. During our discussions, Dr Jakob advised me that he anticipated TAG Neurology would release their proposals for the classification of the G93.3 terms in September 2015, and if not ready by September, then by "December 2015, at the latest" thereby allowing time for stakeholder scrutiny and comment prior to finalization.

However, no proposals and rationales for proposals have been published by TAG Neurology via the Proposal Mechanism, or entered into the Beta draft or released by any other means, and the terms remain unaccounted for in any chapter and any linearization of the public draft.

• Until TAG Neurology releases its proposals for these legacy terms, stakeholders are unable to review, comment on or input into TAG proposals for chapter location(s), parent class(es), hierarchies, or Content Model parameters.

• Nor is is possible for stakeholders to submit proposals for Exclusions for these terms under other diagnostic categories, since these entities do not currently appear in the draft. [1][2]

During the course of the last four years, numerous stakeholders have approached ICD Revision requesting updates on proposals for these three terms, including a Scottish Health Directorate, an English MP on behalf of the All Party Parliamentary Group on M.E., a member of the House of Lords, several UK registered patient organizations, an international alliance of organizations representing the interests of patients in 13 European countries, and stakeholder advocates.

According to the newsletter: ICD-11 Update, January 2017 [3]:

"Proposals that are received between 1 January 2017 and 30 March 2017 will be taken into account for the final version for implementation. Proposals received after that date will be considered in the context of ICD-11 maintenance after 2018."

There are mounting concerns among international stakeholders that there is now very little time left before the deadline.

The Joint Task Force has teleconferences and a three day meeting scheduled for 16 February, 20-22 February and 16 March [3].

I request that the absence of TAG proposals for these three terms is tabled for discussion at the Joint Task Force's earliest convenience with the objective of expediting the release of TAG Neurology's proposals prior to March 2017 in order that stakeholders are given the opportunity to review and comment on proposals while there is still time, and in order that ICD-11 is inclusive of stakeholder participation in the revision process.

I should be pleased if you will confirm that this matter will be added to the Agenda at a forthcoming meeting and advise me of the date of the meeting for which it is being tabled for discussion.

Thank you for your consideration.


Sincerely

Suzy Chapman

References:

1 Dr Geoffrey Reed, Personal communication, 24 August, 2014
2 Linda Best, Rejection note, Beta Proposal Mechanism, November 15, 2016
3 ICD-11 Update, January 2017 http://www.who.int/entity/classifications/ICD11January2017Newsletter.pdf

 

[trishrhymes]

Hi Suzy,

Having read some of your postings on other threads I have gathered that this is about how the World Health Organisation classifies and describes CFS, ME and related conditions.

Please correct me if I am wrong.

The posts you have made in this thread so far look highly technical, and only comprehensible to people with more detailed knowledge than I have.

It looks like you are working hard on our behalf to make sure our illness is properly recognised, and for that I thank you.

I can see that this thread is an important public record of your and other people's work on this area.

Perhaps you could add a short paragraph spelling out in lay people's terms just what this is about, and its implications. Only if you have time to do so, of course.

Thank you and best wishes.

 

[Dx Revision Watch]

Hi Suzy,

Having read some of your postings on other threads I have gathered that this is about how the World Health Organisation classifies and describes CFS, ME and related conditions.

Please correct me if I am wrong.

This is correct. Although for ICD-10, there is no descriptive content at all for these terms - only a chapter listing and a code.

The posts you have made in this thread so far look highly technical, and only comprehensible to people with more detailed knowledge than I have.

It looks like you are working hard on our behalf to make sure our illness is properly recognised, and for that I thank you.

Thank you. I have been monitoring and reporting on the revision of ICD-10 for ICD-11 since early 2010. That (and DSM-5) have been the focus of my Dx Revision Watch website.

I can see that this thread is an important public record of your and other people's work on this area.

Perhaps you could add a short paragraph spelling out in lay people's terms just what this is about, and its implications. Only if you have time to do so, of course.

Thank you and best wishes.

Yes, I will do and where possible I will use screenshots for accessibility.

But it won't be today, as I have a document in relation to the ICD-11 proposals for "Bodily distress disorder" to finish editing.

I was not expecting the Written Question to publish until tomorrow or Thursday, so there hasn't been time to prepare explanatory material for this thread. But I will post simple explanations in the next couple of days.

 

[trishrhymes]

Thanks Suzy, no hurry.

 

[ScottTriGuy]

Thank you Suzy for spearheading this important effort that has global implications for all ME patients.

 

[Esther12]

Thank you Suzy for spearheading this important effort that has global implications for all ME patients.

Yes. This is the sort of thing I struggle to keep up with. The acronyms and codes so easily become a jumpble! At the same time, this is the sort of thing tha 'insiders' could well use to promote their own agendas if no-one was keeping an eye on them.

 

[Molly98]

Thank you Suzy for all the hard work you are doing in this area.
I do not understand the technical details but I can see that an awful lot of time and effort is going into this and I recognise that this is vitally important to all of us suffering with ME
Thank you

 

[Dx Revision Watch]

I'm afraid I won't have time, today, to respond to your comments, but please bear with me.

This morning, I received a less than satisfactory email from Dr Robert Jakob, into which various key ICD Revision personnel had been copied. I received an even more unacceptable response after I challenged the omissions in his first email. Countess of Mar has been advised.

I checked the Written Question, today, and I note that it now reads

Neurology: Written question - HL5683

Department of Health

Neurology

so I have amended the text of the post above.

 

[Dx Revision Watch]

The Countess of Mar has alerted me to a Written Response to her Written Question:

http://www.parliament.uk/business/p...nts/written-question/Lords/2017-02-27/HL5683/

Answered by: Lord O'Shaughnessy

Answered on: 07 March 2017

NHS Digital has advised that its officials have discussed this matter with their counterparts at the World Health Organization (WHO). 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.

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.

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

Let's try and unscramble this (though I fear Geneva exists in some kind of parallel universe).

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.

There are no proposals by the Topic Advisory Group for Neurology for the three G93.3 legacy terms in the ICD-11 Beta Foundation, in the MMS Linearization or in the Print Version Index.

Nor have any proposals been uploaded to the Beta Proposals Mechanism by TAG Neurology.

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.

Whose proposal for "chronic fatigue"? No proposals for a "chronic fatigue" category have been uploaded to the Beta Proposals Mechanism or entered into the Beta listings.

For ICD-11, the ICD-10 category "Malaise and fatigue" was changed to "Fatigue". There is no "chronic fatigue" category or sub parent class in the ICD-11 Beta draft.

And since no proposal from an external source for a "chronic fatigue" category has been uploaded via the Proposal Mechanism, I can only assume that TAG Neurology has proposed a "chronic fatigue" category or Robert Jakob is referring to something else.

What he might be refering to in that second sentence is this:

In December 2014, I went onto the Beta draft and submitted a proposal to add Exclusions under the "Fatigue" category for the three G93.3 terms.

In June 2015, after my phone call with Robert Jakob, he went straight into the Beta draft and added this comment:

work on this topic is ongoing

Robert Jakob, WHO 2015-Jun-19 - 08:49 UTC​

Which suggested to me that the TAG had an unhealthy interest in the "Fatigue" category.

In December 2014, I had also requested Exclusions for the G93.3 terms under "Bodily distress disorder". That was rejected in 2016 on the grounds that in order for Exclusions to be inserted, the terms which are being excluded must first be present in the draft, as the Excluded term has a jump link which maps to the term's location in a different chapter of ICD-11.

So what the department has been told is meaningless because that is not what they were asked for. They were asked to release the TAG's proposals for these terms (which I was told would be released end of 2015).

They continue to play games with us. I am disturbed by Robert Jakob's MO.

Last Wednesday, he wrote this to me:

"Further to our earlier correspondence and phone calls, including contacts with other parties linked to chronic fatigue [sic], I reiterate that WHO appreciates the work that you and others have put in to chronic fatigue [sic].
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.

In case there are additional facts that need to be taken into account, they should be submitted on the same platform as comments to the original proposal. Posting all input on the platform provides other stakeholders the opportunity to review the proposals, and will make sure all relevant information is available when the relevant edits are done. Individual terms, like exclusions, are dealt with as soon as the location in the classification has been established. All changes and state changes of proposals are visible on the platform. In this way transparency and accountability is ensured."

*One was unrelated to G93.3. Three were Rejected some time ago. Two are "with WHO" and there is a new one for BDD submitted on March 1.

That was in reply to my request to the Joint Task Force for urgent release of proposals before the March 30 deadline - as you see, he completely sidestepped the issue.

 

[Hajnalka]

Thank you so much for all of your work, Suzy!!

This is all so disturbing.

 

[Dx Revision Watch]

March 7, 2017

CC: The Countess of Mar, House of Lords
CC: Various ICD personnel


Dear Dr Jakob,

From the Parliamentary Written Response (published March 7, 2017):

http://www.parliament.uk/business/p...nts/written-question/Lords/2017-02-27/HL5683/

"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."​

Would you be kind enough to provide myself and Lady Mar with the link?

In the public version of the Beta draft, there are no proposals by the TAG Neurology for the three G93.3 legacy terms either in the ICD-11 Beta Foundation, in the MMS Linearization or in the Print Version Index.

Nor have any proposals been uploaded to the Beta Proposals Mechanism by TAG Neurology that we can see.

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. ​

It is unclear what you are referring to when you say "the proposal submitted for chronic fatigue". There is no proposal for "chronic fatigue" in the Proposals Mechanism.

There is no category for "chronic fatigue" in the Beta draft. There is a "Fatigue" Concept title (which was "Malaise and fatigue" in ICD-10).

Do you mean the proposal which I submitted in December 2014 for Exclusions for the G93.3 legacy terms under "Fatigue"; or do you mean someone else's proposals for a "chronic fatigue"; or do you mean the TAG's proposals for a "chronic fatigue"?

It is simply not clear.

If a version of ICD-11 is being released on 4 April, that will be after the March 30 proposals deadline. If that version contains any proposals by TAG Neurology for the G93.3 legacy terms, by what date can comments on any proposals from them still be accepted for consideration?

I am genuinely concerned that the information you have given the English Department of Health lacks clarity.

I should be grateful if you would, please, clarify, both for myself and for Lady Mar.

Sincerely,


Suzy Chapman

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

It's like wading through treacle.

 

[Dx Revision Watch]

Thank you so much for all of your work, Suzy!!

This is all so disturbing.

I am about to propose a new code for ICD-11 for being driven insane by four years of deliberate obfuscation.

 

[joshualevy]

Let's try and unscramble this (though I fear Geneva exists in some kind of parallel universe).

I thought his answer was quite clear. This is my interpretation:

1. We are not going to release any information on what we are doing until the version designed for field testing is made public on April 4th.
2. Asking questions in the House Of Lords will not make us release any additional information.
3. You will see it when everyone else (not actively working on it) sees it.
4. You are not, in any way, equal partners with us in this. You have made your suggestions; now wait for our process to get to a point when we will share it with outsiders.
5. Whenever publicly asked, we will affirm that we value your input.
6. Go away and don't come back until April 4th, unless there is another delay, in which case you will need to wait longer.

 

[Dx Revision Watch]

Note that April 4 is later than the March 30 deadline for submission of proposals for consideration for a (uncompleted) version of ICD-11 that WHO projects releasing at some point after presentation at the World Health Assembly (WHA), in May 2018. (WHO intends to seek WHA endorsement at a later date.)

"Proposals and review outputs received by 31 December 2016 will become part of the ICD-11 version to be used for extended quality assurance which will begin in March 2017.

"Proposals that are received between 1 January 2017 and 30 March 2017 will be taken into account for the final version for implementation. Proposals received after that date will be considered in the context of ICD-11 maintenance after 2018. Independently, comments by Member States and improvements arising as a part of the Quality Assurance mechanism will be included with deadlines later in 2017." Extract: ICD-11 Update January 2017​

If a frozen version of the Beta draft is released on April 4, which does contain proposals from TAG Neurology for the classification of the ICD-10 G93.3 legacy entities, this will mean that stakeholders will have been placed in the position of having to submit their own proposals (which Dr Jakob has been urging enquirers to do) without the benefit of the context of TAG Neurology's proposals to inform their submissions.

TAG Neurology held its first meeting in 2008, a year after the ICD Revision Process was launched - so they, and many of the other TAG groups, have been at it for at least 8 years.

In case I did not mention it in an earlier post, the recommendations of the various Topic Advisory Groups (TAGs) and sub working groups are advisory only. They can be, and sometimes are overruled by the decisions of the Revision Steering Group, the Joint Task Force and the WHO classification experts, to whom the TAGs report. For example, the JTF has overridden TAG proposals for the location of stroke and for the various dementias.

 

[Dx Revision Watch]

As I already had this material, below, compiled for background briefings, I thought we should have it on record here.

These screenshots track the progress of proposals through the three iterations of the public ICD-11 drafting platforms, since May 2010 to early 2013, at which point, ICD Revision or TAG Neurology obscured the listing for the G93.3 ICD-10 legacy terms from view in the public version of the Beta platform.

Screenshots from:

Initial iCAT drafting platform (released May 2010)
Alpha drafting phase (released May 2011)
Beta drafting phase (released May 2012)

to early 2013.

I am happy for people to link to this post from other platforms. But I would request that images are not taken out of the context of the post or out of context of the notes that accompany the screenshots. The proposals of TAG Neurology are likely to have changed since early 2013, after which they could no longer be viewed in the public Beta platform.

A reminder of the hierarchical structure for the three terms in WHO's ICD-10. Note that the WHO's unmodified ICD-10 differs from the hierarchical structure for these terms in Canada's ICD-10-CM (all three in the Tabular List under G93.3); the US's ICD-10-CM (PVFS and BME under G93.3; CFS NOS under Symptoms, signs chapter, at R53.82) and Germany's ICD-10-GM (CFS as Title term plus three inclusion terms).

ICD-10 Version: 2016 browser platform

In ICD-10, the Tabular List hierarchy is:

Chapter: Diseases of the nervous system
> G90 Other disorders of the nervous system
> G93 Other disorders of brain

G93.3 Title term: Postviral fatigue syndrome
Inclusion term: Benign myalgic encephalomyelitis

Chronic fatigue syndrome is included only in ICD-10 Volume 3: Alphabetical Index, where it is indexed to the G93.3 code.

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


When the iCAT Collaborative drafting platform launched in May 2010, I noted the following proposed changes to the hierarchy:

Parent: Other disorders of brain removed; new Parent added: Other disorders of the nervous system.

CFS was proposed to become the new Title entity and was assigned a draft Definition text:

https://dxrevisionwatch.files.wordpress.com/2017/02/change-history-gj92-cfs.png

iCAT demo drafting platform Change Note:

Here is CFS in the iCAT Linearization in May 2010:

https://dxrevisionwatch.files.wordpress.com/2010/05/2icatgj92.png

Moving on to the Alpha drafting phase (from May 2011):

https://dxrevisionwatch.files.wordpress.com/2011/05/icd11-alpha1-17-05-111.png

So at that point, TAG Neurology had CFS as the Title term under Parent: Other disorders of the nervous system; BME specified as the Inclusion term; but PVFS unaccounted for, at that point.

A short definition was inserted later.

Then it changed to this: Note the change of Parents. CFS was now parked in a "Selected cause is..." sub linearization within the Foundation Component. The "To be retired" parent was removed when the public version of the Beta drafting platform replaced the public version of the Alpha platform:

https://dxrevisionwatch.files.wordpress.com/2014/02/icdjuly31_cfs2.png

When the Beta phase drafting platform was launched in May 2012, it displayed the terms like this:
(still under a "Selected cause is..." sub linearization).

It remained unclear what the purpose of these various sub linearizations was:

https://dxrevisionwatch.files.wordpress.com/2017/02/beta12.png

As you see, Benign myalgic encephalomyelitis was specified as the Inclusion term under Chronic fatigue syndrome (you can't see it on this screenshot, but the hover text that displayed over the tiny asterisk to the right of the word "encephalomyelitis" read "This term is an inclusion in the linearization." This is how Inclusion terms are currently identified in the public Beta draft.

In the ICD-11 Print Versions (which are only available to registered users), Inclusions are listed more prominently under the Title terms and only the Inclusion is listed in the Print versions, ie, there are no synonym terms in the Print version.)

Postviral fatigue syndrome was now accounted for within the Synonyms list. So all three terms, in early 2013, were accounted for, albeit with a change of hierarchy between the terms, as they stand in ICD-10.

A different Definition text was later inserted into the Definition field. My screenshot predates the insertion of the Definition, but I have the text on file.

Then, in early February, 2013, the listing for Chronic fatigue syndrome was removed from view in the public beta draft. The terms would still appear in the more complex editing platform that the TAG editors work on, in a holding pen for terms for which decisions need to be made.

The "Selected cause is..." sub linearizations could no longer be pulled up and the numerous child categories listed under "Selected cause is diseases of the nervous system" were restored to the Foundation Component, under Other diseases of the nervous system or listed as child categories under new parent classes.

So the "Selected cause is...." listings may have been a "holding pen" while the TAG was reorganizing that section of the Diseases of the nervous system chapter.

But that does not explain why the TAG did not restore the three legacy terms to the draft and thus far, Dr Robert Jakob has avoided addressing that question.

From that point, the three terms disappeared into a black hole with no explanation visible in the public version of the Beta draft for why they were no longer displaying in any listing, under any Parent term, or in any Chapter or in the Print Version of the Index. And that has been the situation, now, for over four years.

Compiled by Suzy Chapman for Dx Revision Watch.

 

[Dx Revision Watch]

On March 1, I submitted a formal, referenced Proposal via the Beta draft Proposal Mechanism for the Deletion of proposed ICD-11 category, Bodily distress disorder.

ICD-11 Beta draft Proposal Mechanism:

https://tinyurl.com/ICD11BDDsubmission

In order to read the submission, in situ, you will need to be registered with the Beta for increased interaction.

Or you can read the submission on my Dx Revision Watch site, here:

ICD-11 Beta draft: Rationale for Proposal for Deletion of proposed new category: Bodily distress disorder

http://wp.me/pKrrB-4dc

or in PDF format, here:

https://dxrevisionwatch.files.wordpress.com/2017/03/bdd-submissionv3.pdf

Please note this submission is not intended as advocacy and it does not address exclusively the implications for ME, CFS patients for this new, proposed category. Instead, the focus is on the problematic nomenclature, an issue which has been discussed several times over the last few years with ICD Revision, and with some of the researchers whose papers are referenced in this submission.

In January 2015, I was told by Dr Geoffrey Reed, via the Beta platform:

"I agree that there is a potential for confusion with the Fink et al. construct, which is conceptually different. So, this is not ideal."

 

[A.B.]

From that point, the three terms disappeared into a black hole with no explanation visible in the public version of the Beta draft for why they were no longer displaying in any listing under any Parent term or any Chapter or in the Print Version of the Index. And that has been the situation, now, for over four years.

Can you explain it in simpler words? Are they removing PVFS, BME, CFS from the ICD?

 

[Dx Revision Watch]

Can you explain it in simpler words? Are they removing PVFS, BME, CFS from the ICD?

Simple answer: We currently have no idea what their intentions are for these terms because they are refusing to act transparently.

Longer answer: Which is why 15 international patient organizations backed my call, in February, for the Joint Task Force to place the matter of the missing terms and the continued absence of proposals on the agenda of the Joint Task Force's three day meeting, in Cologne (February 20-22), with the objective of expediting urgent release of proposals for public scrutiny and comment.

(The initial letter to the Joint Task Force is in Post #3.)

All that I have been told since my letters of February 6, 22 and 23, is that the matter was discussed on Day 3 of the meeting. And that came, not from one of the JTF co-chairs, but from Dr Chris Chute, chair of the Revision Steering Group.*

It is unconfirmed whether Dr Chute, who is based in the US, had attended the Cologne meeting in person. Summary Reports of the JTF face to face meetings are published on the ICD Revision website, so at some point there will be a public report of this meeting.

The Joint Task Force co-chairs (DIMDI's, Dr Stefanie Weber and Australia's Dr James Harrison) are stonewalling.

The two emails I received from Dr Robert Jakob on March 1 (3 days after the Countess of Mar tabled her Written Question) were garbled and failed to address any of the issues raised in my three communications with the Joint Task Force, although Dr Jakob appeared to be acting as a spokesperson for the JTF group.

So we still do not know what their intentions are, after four years with no progress reports.

(Other TAGs have published reports, journal editorials and position papers, given presentations at conferences etc setting out their emerging proposals for those category blocks that are undergoing reorganization or for specific disorder or disease terms that are undergoing revision.)

ICD Revision is being promoted as an open, transparent process, with stakeholder participation. Other TAGs are not operating behind closed doors so it is not the case that we have been asking for special concessions - their proposals are supposed to be public domain.

But we may not know what their intentions are until April, and perhaps not even then.

By which time, the proposal deadline will have been reached for consideration of proposals for inclusion in the initial release of an incomplete version of ICD-11, at some point after May 2018.

*When Dr Chris Chute emailed me on the evening of the day that the matter was apparently discussed at the Cologne meeting, he did have some information he evidently felt the need to impart.

But since his information is unconfirmed; is incomplete and since neither the Joint Task Force co-chairs, or Dr Jakob or any other ICD Revision staffer will confirm or deny Dr Chute's information, I am not prepared to release that information publicly.

If Dr Chute has misunderstood the TAG's intentions or his information is only partly correct, if I were to go public with it, it would be very hard to reel it back in again once it has been plastered all over Facebook and Twitter and would likely result in considerable confusion.

Additionally, I do not see why I should act as an unofficial transmitter of unconfirmed information that is being denied through the official channel of the Joint Task Force co-chairs when they are in a position to set out clearly what the proposals are or to expedite their release via the Proposals Mechanism.

If it is correct, however, I can tell you that you ain't going to like it; which is no doubt why ICD Revision took the terms out of the public Beta four years ago, and why they are reluctant to release this information until they have no choice but release it and why Dr Jakob will bloviate until the cows come home about my proposals for exclusions, rather than confront the dirty elephant in the room.