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

[TillyMoments]

Thank you, Joan.



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:

Done but have no idea what I am doing
I'm not sure I want to know but have to ask what is and who put for ward bodily distress disorder?

 

[Dx Revision Watch]

Done but have no idea what I am doing
I'm not sure I want to know but have to ask what is and who put for ward bodily distress disorder?

TillyMoments, if you are unsure about using the Beta draft, I suggest that you don't post anything on it unless you have had time to become better informed about ICD-11 and the proposals of particular interest to stakeholders in ME, CFS.

It is a platform for viewing the Beta draft for ICD-11 and for submitting formal comments on proposals, preferably supported with references.

A new category called Bodily distress disorder, has been proposed by one of the ICD Revision external working groups that are tasked with making recommendations for the revision of the disorders and diseases in the WHO's ICD-10 classification system.

The recommendations of the various working groups are advisory only and can be overridden by the WHO and the Joint Task Force, to which the working groups report.

Bodily distress disorder (BDD) is a single category (with three severities: Mild; Moderate; Severe) that is being proposed to replace a number of categories in ICD-10, called the Somatoform disorders, which were not very often used.

It is a mental or behavioural disorders category that poses particular problems for patients with ME, CFS, FM and IBS, although it can be applied to patients with any diagnosed illness, like cancer, diabetes, cardiac disease etc. if their clinician considers they also meet the BDD criteria.

Additionally, it is proposed to use a name for this new ICD-11 category that is already closely associated with "Bodily distress syndrome" which is a diagnosis already in used in Denmark, in research and in clinical settings.

The researchers who devised the BDS diagnosis consider that ME, CFS, FM and IBS are manifestations of a single disorder with a shared aetiology and should be given the diagnosis "BDS" instead, and all treated with CBT.

So Bodily distress disorder is a particular threat to ME, CFS patients, which is why I have proposed it should be abandoned for ICD-11.

 

[Dx Revision Watch]

In response to Dr Robert Jakob's comment, yesterday, via the Proposal Mechanism:

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

​

http://apps.who.int/classifications...lGroupId=e3426560-b6e4-4c94-b0c8-ba25fabe66fa

Comment

Suzy Chapman 2017-Mar-11 - 13:25 UTC

Thank you, Dr Jakob, for this status update at March 10, 2017.

I note that ICD-10 concept title, R53 Malaise and fatigue is replaced for ICD-11 Beta with concept title, Fatigue.

I further note that for ICD-11 Beta, Fatigue is primary parented under General symptoms and secondary parented to proposed grouping, "Symptoms or signs involving motivation or energy."

Re Exclusions: In ICD-10 Volume 1: Tabular List, under Malaise and fatigue there is an Excl. for "fatigue syndrome (F48.0)" and also for "fatigue syndrome: • postviral (G93.3)."

It is not unreasonable, then, to propose that for ICD-11, consideration might also be given to adding exclusions for the G93.3 legacy entities under Fatigue.

I have been advised by WHO's Linda Best that "exclusion terms must exist in the classification as entities to enable linking" - a convention that I was unaware of when submitting the proposal for exclusions for the G93.3 legacy entities under Bodily distress disorder (submitted on December 30, 2014; Rejected on November 15, 2016) and also when submitting the proposal for exclusions for the G93.3 legacy entities under Fatigue (submitted on December 30, 2014; Status changed to "WHO team is studying the proposal. Editing the proposal is not allowed" on June 19, 2015)

These submissions for exclusions had been informed by the guidance contained within the Content Model Reference Guide ICD-11 Revision, World Health Organization Geneva, 2011.

The number, type and application of exclusions for ICD-11 has been under discussion since 2014. I rely here on the discussion at point 10.5 of Summary Report, Third Meeting of the JLMMS Task Force Cologne, Germany, 11-14 April 2016 [1].

If it is the case that principles for the application of exclusions in ICD-11 have evolved since publication of the Content Model Reference Guide, there is currently no up to date public domain guidance for stakeholders to inform the preparation of proposals or the submission of comments on proposals. A guideline for stakeholder consumption clarifying the current principles for the number, type and application of exclusions would be welcomed.

Re Entity terminology: The Written Response provided on March 7, 2017 by Lord O'Shaughnessy to a Parliamentary Written Question tabled by the Countess of Mar, on February 27, 2017 stated:

"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."

This statement has resulted in a good deal of unnecessary confusion. It is not clear whose proposal is being referred to; that is, whether it refers to a proposal submitted by TAG Neurology, or by another TAG, or by another party; or whether it refers to a proposal which I have submitted.

It would be helpful if this point could be clarified.

The Parliamentary statement has also resulted in confusion due to the terminology used. There is no "chronic fatigue" entity in ICD-10 and no "chronic fatigue" entity in the public version of the ICD-11 Beta drafting platform (unless TAG Neurology is proposing to add a new entity called, "chronic fatigue").

As you know, there was a "Fatigue syndrome" inclusion under ICD-10's, F48.0 Neurasthenia. But for ICD-11, Neurasthenia is retired and has been subsumed by a single, proposed new entity, Bodily distress disorder, which also subsumes and replaces all the ICD-10 F45.0-F45.9 somatoform disorders, with the exception of Hypochondriasis [2][3]. I note that an exclusion for bodily distress disorder has been inserted under Fatigue.

The proposals I submitted in December 2014 were for exclusions for the specific ICD-10 (G93.3) legacy entities: Postviral fatigue syndrome; Benign myalgic encephalomyelitis; and Chronic fatigue syndrome, which are all currently unaccounted for within the public version of the Beta platform.

I have made no proposals in relation to "chronic fatigue."

Likewise, my letters to the Joint Task Force of February 6, 22 and 23 were in relation to the specific ICD-10 (G93.3) legacy entities: Postviral fatigue syndrome; Benign myalgic encephalomyelitis; and Chronic fatigue syndrome.

There is no context within ICD-10 and ICD-11 in which to place the term "chronic fatigue." I would suggest, therefore, that it order to avoid confusion the specific ICD-10 (G93.3) legacy terms are referenced.

Re Deadlines: The Written Response provided on March 7, 2017 by Lord O'Shaughnessy 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."

This statement also lacks clarity. It is not clear what the "latest version" of ICD-11 refers to. There are certainly no relevant proposals from TAG Neurology in the public version of the Beta, as it stands this week.

Your comment of March 10 says, "work is still progressing to identify the correct place in the new structures of ICD-11," which implies that TAG Neurology has not yet reached consensus over its proposals for (I presume) the three ICD-10 legacy entities, Postviral fatigue syndrome; Benign myalgic encephalomyelitis; and Chronic fatigue syndrome.

If TAG Neurology has still to reach consensus, could you please set out what are the implications for:

a) a release of TAG Neurology's proposals before the March 30 proposal deadline?

b) the inclusion of TAG Neurology's proposals in the projected April 4 frozen version for field testing?

If TAG Neurology's proposals were to be published at some point between now and April 4, by what date will stakeholder comments on TAG's proposals need to be submitted in order for comments to be taken into consideration for the final version of ICD-11, that is projected for release at some point in 2018?

There is no information on the Beta draft that states for how long the comment period will remain open to receive comments on proposals that have been submitted before the March 30 deadline. This is information of relevance to all stakeholder groups.

I make no apology for the length of this comment and trust that the lack of clarity over the past few weeks will now be addressed.

Stakeholders in these ICD-10 entities have now been subject to a four year period during which there has been no transparency of process - this serves no-one's interests.

[1] Summary Report, Third Meeting of the JLMMS Task Force Cologne, Germany, 11-14 April 2016 (p12 Exclusion Types) http://www.who.int/entity/classifications/icd/revision/2016.04.11-14_iSummaryMeetingReportCologne.pdf

[2] Creed F, Gureje O. Emerging themes in the revision of the classification of somatoform disorders. Int Rev Psychiatry. 2012 Dec;24(6):556-67. doi: 10.3109/09540261.2012.741063. [PMID: 23244611]

[3] Gureje O, Reed GM. Bodily distress disorder in ICD-11: problems and prospects. World Psychiatry. 2016 Oct;15(3):291-292. doi: 10.1002/wps.20353. [PMID: 27717252]

Suzy Chapman 2017-Mar-11 - 13:25 UTC

 

[Denise]

@Dx Revision Watch - I very much appreciate all of your work on this and the updates you provide! Thank you!

 

[Dx Revision Watch]

@Dx Revision Watch - I very much appreciate all of your work on this and the updates you provide! Thank you!

Thank you, Denise. Some days it feels like wading through treacle, with a blindfold on, hands tied behind my back and a distant voice intoning, "If you have comments and queries, use the Proposal Mechanism - it's the transparent way....." over and over and over...

 

[Chrisb]

@Dx Revision Watch

Thanks for all your work and bringing this to our attention. I have been trying to find out about the so called Bodily distress syndrome. Is this article the working model or is there something else of which we should be aware?

Bodily distress syndrome: A new diagnosis for functional disorders in primary care?

• Anna Budtz-Lilly1Email author,
• Andreas Schröder2,
• Mette Trøllund Rask1,
• Per Fink2,
• Mogens Vestergaard1 and
• Marianne Rosendal
• 
  
• https://bmcfampract.biomedcentral.com/articles/10.1186/s12875-015-0393-8

The generalisations seem mind bending. Under "The nature of bodily distress" comes:

"The wide range of conditions labelled with different names show striking similarities in symptom clustering, aetiology, pathophysiological mechanisms, patient characteristics, treatment response and co-morbidity".

This seems relevant to your thread but one might anticipate that discussion of it here would distract from the main emphasis.

 

[Dx Revision Watch]

@Dx Revision Watch

Thanks for all your work and bringing this to our attention. I have been trying to find out about the so called Bodily distress syndrome. Is this article the working model or is there something else of which we should be aware?

Bodily distress syndrome: A new diagnosis for functional disorders in primary care?

<snip>

This seems relevant to your thread but one might anticipate that discussion of it here would distract from the main emphasis.

Bodily distress syndrome (BDS) is the Fink et al. (2010) disorder construct that is already is use in Denmark, in research and clinical settings [1][2].

The working group that is charged with making recommendations for the revision of the ICD-10 somatoform disorders (located under the Mental and behavioural disorders chapter, in ICD-10) is the Somatic Distress and Dissociative Disorders Working Group (S3DWG).

The construct which the ICD-11 S3DWG working group are proposing to replace the ICD-10 somatoform disorders is very close to the DSM-5's Somatic symptom disorder (SSD).

SSD is differently conceptualized to the Fink et al. (2010) BDS.

The Project Lead for the ICD-11 chapter for Mental, behavioural or neurodevelopmental disorders has acknowledged in personal correspondence and publicly that the disorder construct being proposed for ICD-11 is differently conceptualized to the Fink et al. (2010) construct, has a very different criteria set, and potentially captures a different patient population.

However, the (S3DWG) working group is proposing to use the disorder name, Bodily distress disorder, which is a term that not only sounds very similar to Bodily distress syndrome it is already used interchangeably with it - and has been since at least 2007.

In 2015, the Project Lead for ICD-11 chapter Mental, behavioural or neurodevelopmental disorders agreed with me that there is a potential for confusion between the two constructs.

"I agree that there is a potential for confusion with the Fink et al. construct, which is conceptually different. So, this is not ideal....However, it should be possible to arrive at some satisfactory terminology and I will discuss further with the Working Group." Geoffrey Reed2015-Jan-11 - 09:37 UTC​

*Discussions between Profs Creed and Fink during the Research Clinic for Functional Disorders Symposium presentations, Aarhus University Hospital, May 15, 2014, noted that Fink et al’s BDS and DSM-5’s SSD are “very different concepts.” That SSD and BDS are divergent constructs is also discussed in: Medically Unexplained Symptoms, Somatisation and Bodily Distress: Developing Better Clinical Services, Francis Creed, Peter Henningsen, Per Fink (Eds), Cambridge University Press, 2011.


As posted earlier in this thread, on March 1, I submitted a formal proposal via the ICD-11 Beta drafting platform Proposal Mechanism for the Deletion of proposed new disorder category, "Bodily distress disorder."

You can read my submission here, on my website:

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

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

or here in PDF: https://dxrevisionwatch.files.wordpress.com/2017/03/bdd-submissionv3.pdf

or in the attached PDF.

It is several pages in length, so I am not posting it in full, here, but it does set out the differences between the ICD-11 BDD construct and that of Fink et al. (2010) BDS.

The thrust of my rationale for Deletion of the term is that researchers/clinicians already do not differentiate between the terms, "bodily distress syndrome" and "bodily distress disorder."

It stresses the difficulties and implications for ICD-11 of maintaining the discrete identity of the proposed disorder, once ICD-11 is in the hands of its end users – clinicians, allied health professionals and coders; the implications for patients; the particular vulnerability of those diagnosed with one of the so-called, "functional somatic syndromes"; the implications for data reporting and analysis and the implications for maintaining construct integrity within and beyond ICD-11.


I haven't prepared a table comparing ICD-11's proposed BDD with the Fink et al. (2010) BDS, but several years ago, I prepared this table comparing BDS with DSM-5's SSD (to which ICD-11's proposed BDD is very close):

1 Fink P, Schröder A. One single diagnosis, bodily distress syndrome, succeeded to capture 10 diagnostic categories of functional somatic syndromes and somatoform disorders. J Psychosom Res. 2010 May;68(5):415-26. [PMID: 20403500]

2 Fink P, Toft T, Hansen MS, Ornbol E, Olesen F. Symptoms and syndromes of bodily distress: an exploratory study of 978 internal medical, neurological, and primary care patients. Psychosom Med. 2007 Jan;69(1):30-9. [PMID: 17244846]

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

In 2014, I submitted proposals for adding Exclusions for the three G93.3 legacy terms under "Bodily distress disorder" and also under "Fatigue," in the Symptoms, signs chapter.

At a presentation in Denmark, in March, 2014, given at a Danish parliamentary hearing on Functional Disorders, Prof Per Fink had stated that he and his colleagues had tried to get WHO to incorporate a section for a special group of disorders where BDS could be placed that was located neither in psychiatry nor in general medicine, but he had not been successful.

 

[Dx Revision Watch]

Chris, the Aarhus Research Clinic for Functional Disorders and Psychosomatics clinic website is here:

http://funktionellelidelser.dk/en/about-the-clinic/

 

[Dx Revision Watch]

Just to muddy the waters...

The proposal that has been entered into the Beta for the ICD-11 core version for the replacement for ICD-10's somatoform disorder categories is the SSD-like, Bodily distress disorder.

But there is another ICD-11 working group, led by Prof Sir David Goldberg, that is responsible for making recommendations for the revision of the abridged primary care version of the chapter for Mental and behavioural disorders, which will be known as ICD-11 PHC.

That group is the "PCCG."

They have been proposing, for the ICD-11 PHC version, a disorder construct that is a close adaptation of the Fink et al. (2010) Bodily distress syndrome.

They had proposed to call their slightly adapted version of the BDS definition and criteria, Bodily stress syndrome.

Now the disorders in the core version are expected to have conceptual concordance with their corresponding disorders in the abridged primary care version. It is the SSD-like, BDD, that has been entered into the core version.

Francis Creed is a member of the S3DWG working group and he is known not to favour the SSD construct or the SSD name. He favours Fink et al. So it's not altogether surprising, that although the core version concept is an SSD-like construct, the group is proposing to call it by a name already strongly associated with the (differently conceptualized) construct which Creed is known to favour.

Note that recommendations of the various ICD-11 working groups are advisory only. Their proposals can be, and sometimes are overruled by the Joint Task Force, the Revision Steering Group and WHO/ICD classification experts.

 

[Dx Revision Watch]

There is a problem with the Fink et al. (2010) BDS with respect to classification within a mental and behavioural disorders chapter.

For ICD-11, WHO/ICD Revision expects that for inclusion of disorders under the Mental, behavioural or neurodevelopmental disorders chapter, psychological mechanisms should apply - positive psychobehavioural responses (as SSD requires and as the BDD proposal for ICD-11 core version requires).

For the Fink et al. (2010) disorder construct, psychological or behavioural characteristics are not part of the criteria. Symptom patterns or clusters from organ/body systems (cardiopulmonary; gastrointestinal; musculoskeletal or general symptoms) are central.

This issue of "fit" for a mental and behavioural disorders chapter of classification systems is discussed in this (Rief & Isaac 2014) paper:

http://www.medscape.com/viewarticle/829813

Note: there where the authors use the term, "Bodily distress disorder" within this paper, they are actually discussing the Fink et al. (2010) "Bodily distress syndrome" construct - not the construct as defined and entered into the ICD-11 Beta draft.

Note: where the authors write:

"We will also discuss two alternatives with their pros and cons, namely the bodily distress disorder concept originally introduced by Per Fink and colleagues[2] and which is a concept that found the sympathies of the ICD-11 working group..."

they are referring to the PCCG primary care group, because the S3DWG group is recommending the SSD-like disorder construct.

This paper was cited in my submission for Deletion of the entity Bodily distress disorder as a good example of researchers using the terms interchangeably.

I discussed this with Prof W Rief, who agreed that the proposed nomenclature for ICD-11 is confusing.

 

[Dx Revision Watch]

@Dx Revision Watch

The generalisations seem mind bending. Under "The nature of bodily distress" comes:

"The wide range of conditions labelled with different names show striking similarities in symptom clustering, aetiology, pathophysiological mechanisms, patient characteristics, treatment response and co-morbidity".

"A subsequent analysis of the concept of bodily distress disorder from the same group revealed that this diagnosis would be able to cover most patients with six other functional somatic syndromes, namely fibromyalgia, chronic fatigue syndrome, hyperventilation syndrome, IBS, noncardiac chest pain, other pain syndromes or any somatoform disorder. At least 90% of patients fulfilling one of these disorders also fulfill the criteria for bodily distress disorder.* [1][2]"

[1] Fink P, Schröder A. One single diagnosis, bodily distress syndrome, succeeded to capture 10 diagnostic categories of functional somatic syndromes and somatoform disorders. J Psychosom Res 2010; 68:415–426.

[2] Rief W, Isaac M. The future of somatoform disorders: somatic symptom disorder, bodily distress disorder or functional syndromes? Curr Opin Psychiatry September 2014 – Volume 27 – Issue 5 – p315–319. [PMID: 25023885]

*The authors are discussing, in this paper, the Fink et al. (2010) "Bodily distress syndrome" not the ICD-11's definition, characterization and criteria for ICD-11 "Bodily distress disorder."

 

[Dx Revision Watch]

I've put this up before but it may help to get a better handle:

BDS construct and adaptation (criteria based on symptom clusters from body systems; includes the SDs and subsumes all the so-called, FSSs. If the symptoms are better explained by another disease, it cannot be labelled BDS)

Fink: Bodily distress syndrome - PCCG group's proposal for ICD-11 PHC: Bodily stress syndrome


SSD construct and adaptation (criteria based on psychobehavioural responses; captures SDs and can be applied to a % of those with distressing symptom(s) associated with FSSs and general medical conditions, if SSD/BDD criteria otherwise met; symptoms not specified; requirement for symptoms to be "unexplained" is removed.)

DSM-5: Somatic Symptom disorder - SSDWG group's proposal for ICD-11 core: Bodily distress disorder

 

[Dx Revision Watch]

I first identified the problem with the nomenclature, back in late 2012, when I obtained a copy of this paper, published by the chair and one of the key members of the S3DWG working group:

Creed F, Gureje O. Emerging themes in the revision of the classification of somatoform disorders. Int Rev Psychiatry. 2012 Dec;24(6):556-67. doi: 10.3109/09540261.2012.741063. [PMID: 23244611]

It was evident, at that point, that what the S3DWG was proposing was an SSD-like disorder construct. In late January 2014, a definition for "Bodily distress disorder" was inserted into the ICD-11 Beta draft - which brought it to a potentially wider professional audience.

Again, it was evident that what was being proposed was an SSD-like definition and criteria [1]. Since the (Creed & Gurege 2012) paper, at least two other papers have been published by S3DWG members [2][3] plus a symposium presentation given by Prof Gureje.

And yet not one psychiatric researcher or clinician, psychosomatics researcher, general medical practitioner, specialty medical professional or allied health professional has published on the specific issue of the proposed nomenclature for ICD-11 proposing to use a disorder name already strongly associated with the divergent Fink et al. (2010) BDS and the implications for this, or commented via the Beta draft or the Proposals Mechanism.


1 Dx Revision Watch: Between a Rock and a Hard Place: ICD-11 Beta draft: Definition added for “Bodily distress disorder”, January 29, 2014 http://wp.me/pKrrB-3Gl

2 Classification of somatic syndromes in ICD-11. Gureje, Oye. July 15, 2015 (doi: 10.1097/YCO.0000000000000186)

3 Gureje O, Reed GM. Bodily distress disorder in ICD-11: problems and prospects. World Psychiatry. 2016 Oct;15(3):291-292. doi: 10.1002/wps.20353. [PMID: 27717252]

 

[Dx Revision Watch]

Chris, this is Fink's vision:

The first graphic is in Danish but you will be able to understand it:

One of the English NHS Trusts has had Fink and some of his colleagues over here to instruct general practitioners in the application of the TERM Model as part of integrated IAPT expansion into MUS service provision and we are seeing increasing numbers of MUS and PPS services being commissioned.

Examples of these in the thread:

MUS, PPS services and integration into NHS primary care - what's happening across the UK?

http://forums.phoenixrising.me/inde...ary-care-whats-happening-across-the-uk.48710/

 

[Tilney]

https://www.kingsfund.org.uk/sites/...lly-unexplained-sympthoms-kingsfund-may12.pdf

It appears to infer in the definition that -

Medically Unexplained Symptoms - Other terms to describe this group - Bodily Distress Syndrome

It also appears that with enhanced GP management it saves the NHS money.

 

[Tilney]

http://www.londonhp.nhs.uk/wp-content/uploads/2011/03/MUS-Project-Implementation-Report.pdf

Medically Unexplained Symptoms (MUS) Project implementation report
March 2011

 

[Dx Revision Watch]

http://www.londonhp.nhs.uk/wp-content/uploads/2011/03/MUS-Project-Implementation-Report.pdf

Medically Unexplained Symptoms (MUS) Project implementation report
March 2011

Tilney,

That document is already flagged up in the MUS thread, where I and others have been collating a great deal of material on MUS and PPS services and integrated IAPT services:

http://forums.phoenixrising.me/inde...ary-care-whats-happening-across-the-uk.48710/

 

[Dx Revision Watch]

What (if anything) are all the ME charities doing about any of this?
@charles shepherd

I won't presume to respond on behalf of Dr Shepherd.

But I don't think Dr Shepherd will mind my mentioning that the ME Association was one of 15 international organizations that contacted the ICD-11 MMS Joint Task Force members, in February, in support of my letter to the Joint Task Force of February 6.

In that letter, I had called for the matter of the continued absence of the G93.3 legacy terms from the public version of the Beta drafting platform to be placed on the agenda for a forthcoming Joint Task Force meeting, with the objective of expediting release of Topic Advisory Group for Neurology's proposals for public scrutiny and comment.

That letter is in Post #3 of this thread: Post #3: Letter to Joint Task Force, February 6, 2017

The 15 organizations who backed my letter were from Canada, USA, Japan, Australia, UK and six EU countries. These organizations were approached for support because those countries have reps on the Joint Task Force who are leads in classification and statistics agencies or are WHO-FIC reps etc.

ETA: @Dx Revision Watch Am I right in understanding the bottom line of all this is WHO plan to make ME disappear and redefine CFS as psychosomatic?

The bottom line is this:

Until the Topic Advisory Group for Neurology have released their proposals we have no indication of what TAG Neurology are currently proposing for these terms for ICD-11.

Additionally, as I have stressed several times in this thread - the proposals of the various external Topic Advisory Groups are advisory only. TAG recommendations can be overridden and sometimes are being overridden by the Joint Task Force and by senior WHO/ICD Revision classification experts, to whom the TAG's report.

So there are several levels of decision makers, here, with WHO and Joint Task Force as final decision makers.

Maybe a thread with this(or similar) as a heading might be useful.

We currently have no indication of the TAG's recommendations; I only do evidenced based reports.

I appreciate it is very complex but people need to understand what exactly is at stake here.

Yes, it is complex and we currently have no indication of the TAG's recommendations, therefore I see no justification for changing the title of the thread.


Statements from WHO/ICD Revision:

On February 12, 2014, WHO issued a public statement that ‘Fibromyalgia and ME/CFS are not included as Mental & Behavioural Disorders in ICD-10, [and that] there is no proposal to do so for ICD-11.’

On February, 14, 2014, Mr Gregory Hartl, Head of Public Relations/Social Media at WHO, stated, ‘there is and never was any intention to [reclassify Fibromyalgia and ME/CFS as a Mental and Behavioural Disorder]’.

On July 24, 2014, in personal correspondence, ICD Revision's Dr Geoffrey Reed clarified that there was no proposal and no intention to classify the legacy terms under mental or behavioural disorders.

On June 19, 2015, WHO's Dr Robert Jakob stated in a telephone call with me that he can be “crystal clear” that there is no proposal to classify the G93.3 legacy terms under the Mental or behavioural disorders chapter.

Edited to add:

For ICD-11 Beta:

Fibromyalgia has been relocated from its ICD-10 location under

Chapter: XIII Diseases of the musculoskeletal system and connective tissue

to proposed new location under

Chapter: Symptoms, signs...
General symptoms
> Pain
> Chronic primary pain
>> Multi-site primary chronic pains syndromes.

(There have been no comments on this proposal by Fibromyalgia orgs, at least not via the Proposals Mechanism.)

Irritable bowel syndrome (IBS) remains under

Chapter: Diseases of the digestive system
> Functional gastrointestinal disorders
>> Irritable bowel syndrome or certain specified functional bowel disorders

Under Parent: Functional gastrointestinal disorders

and IBS's Parent: Irritable bowel syndrome or certain specified functional bowel disorders

there are Exclusions for the categories:

Bodily distress disorder
Hypochondriasis

 

[Dx Revision Watch]

https://www.kingsfund.org.uk/sites/...lly-unexplained-sympthoms-kingsfund-may12.pdf

It appears to infer in the definition that -

Medically Unexplained Symptoms - Other terms to describe this group - Bodily Distress Syndrome

It also appears that with enhanced GP management it saves the NHS money.

Tilney,

As we already have a substantial thread on MUS and PPS services, here:

http://forums.phoenixrising.me/inde...ary-care-whats-happening-across-the-uk.48710/

which does include that flyer for the pilot study, I would prefer to keep the focus of this thread on ICD-11 proposals.

 

[Dx Revision Watch]

This thread was created specifically for updates on developments with ICD-11 proposals as we are approaching a crucial time with proposal deadlines.

The thread below was created to collate material on MUS, PPS services and integrated IAPT services:

MUS, PPS services and integration into NHS primary care - what's happening across the UK?
http://forums.phoenixrising.me/inde...ary-care-whats-happening-across-the-uk.48710/