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

I understand, Suzy, though I hope you know I played no role in those actions. I continue to be grateful for your work, which has taught me so much.

 

Did you see my proposal to reject BDD? Yes of course I agree that we should advocate against anything that’s unproductive for the chronically ill - and I continue to advocate against BDD. I also continue to believe that the ME community has not fully understood the seriousness of the threat that BDS poses for ME patients. So I do my best to try to clarify that.

 

Fink re Bodily Distress Syndrome and Bodily Stress Disorder [sic]* and the ICD-11 core edition (ICD-11 MMS):


*Where Fink says "Bodily Stress Disorder", he is referring to "Bodily stress syndrome (BSS)" the construct recommended by the Goldberg led, PCCG working group that were charged with making recommendations for the ICD-11 PHC**.

**A clinical guideline written in simpler language to assist non-mental health specialists, especially primary care practitioners and non medically trained health workers, and also intended for use in low resource settings and low- to middle-income countries, with the diagnosis and management of 25 common mental disorders.

The ICD-11 PHC is proposed to comprise 27 mental disorders only and contains no general medical conditions or diseases. Like the ICD-10 PHC (1996), this revised diagnostic and management guideline will not be a mandatory classification for member states.


25 of the 27 mental disorder categories proposed for inclusion in the ICD-11 PHC have equivalence with mental disorder classes within the core ICD-11’s Chapter 06.

ICD-11 PHC is proposed to include a new disorder category called "Bodily stress syndrome (BSS)" which replaces ICD-10 PHC’s "F45 Unexplained somatic complaints/medically unexplained symptoms" and "F48 Neurasthenia" categories.

This proposed "Bodily stress syndrome (BSS)" diagnosis has been adapted from the Fink et al (2010) Bodily distress syndrome (BDS). "Bodily stress syndrome (BSS)" does not have direct equivalence to a diagnostic construct within the core ICD-11.

The ICD-11 PHC’s proposed "Bodily stress syndrome (BSS)" requires at least 3 persistent, medically unexplained symptoms, over time, of cardio-respiratory, gastrointestinal, musculoskeletal, or general symptoms of tiredness and exhaustion, that result in significant distress or impairment (Slide #22) [1][2].

Under exclusions and differential diagnoses for BSS, certain psychiatric and general medical diagnoses have to be excluded but CFS, ME; IBS; and FM appear not to be specified as exclusions or listed under differential diagnoses.

For the mandatory core ICD-11 classification, the WHO is going forward with the differently conceptualized, Bodily distress disorder (BDD), which has close alignment with DSM-5’s Somatic symptom disorder.***

***See: Comparison of SSD, BDD, BDS, BSS in classification systems, Chapman & Dimmock, July 2018.


1 Presentation: Rosendale, M (2017). MUS becomes Bodily Stress Syndrome in the ICD-11 for primary care

2 Syndromes of bodily distress or functional somatic syndromes - Where are we heading. Lecture on the occasion of receiving the Alison Creed award 2017, Fink, Per. Journal of Psychosomatic Research, Volume 97, 127 - 130 https://www.jpsychores.com/article/S0022-3999(17)30445-2/fulltext

Lecture slides: https://dxrevisionwatch.files.wordpress.com/2019/09/plenary_prof_fink.pdf

 

Thanks for the clarification. (That Creed lecture by Fink is a monstrosity!) Yes, ICD-11-PHC is basically a primary care mental health manual, but WHO is making efforts to make it mainstream. They might well succeed. There’s a strong trend toward wider use of mental health diagnosis for bodily symptoms in primary care, and that means it’s possible this manual could play a big role in everyday medicine. It saves a ton of money for national health services. Also it aligns with the recent push to generally avoid overmedicalization and overdiagnosis.

If the new construct succeeds in replacing MUS, that will be catastrophic for ME patients, and those with fibro, IBS, MCS etc.

 

Dr O'Leary states:

but Dr O'Leary has previously stated (my emphasis):

"What Can We Do About It?

"It is very important to be clear and focused about the nature of the objection. ME advocates have no reason to object to the basic criteria for BSS in the ICD for primary care, ICD-11-PHC. In fact, it is in the interests of ME patients to encourage the WHO to adopt just the basic criteria for BSS as they are currently in place. Both studies by the WHO support doing so, and an additional, independent study in Austria also supports doing so xvi. This is the goal. The ME community has very strong reasons to object to the additional recommendation of symptom cluster criteria for BSS in ICD-11-PHC. This is where attention needs to be focused." [1]

1 “BODILY STRESS SYNDROME” INFO SHEET, March 2018, Dr Diane O'Leary for Forward-ME:
http://www.forward-me.org.uk/Reports/BODILY STRESS SYNDROME INFO SHEET CORRECTED.pdf


BSS cannot be both "catastrophic for ME patients, and those with fibro, IBS, MCS etc."

and

"ME advocates have no reason to object to the basic criteria for BSS in the ICD for primary care, ICD-11-PHC. In fact, it is in the interests of ME patients to encourage the WHO to adopt just the basic criteria for BSS as they are currently in place."

 

The core construct of BSS is essentially the same as BDD. Then BDS criteria are considered separately, as an potential addition. WHO studies establish general acceptance of the basic BSS construct, and they show that doctors mostly reject the additional recommendation to use BDS criteria. Doctors actually report that the additional criteria are reckless, and they specifically note the danger for ME patients.

So if there’s going to be a campaign against BSS it should target the grossly unscientific addition of BDS criteria, which pose a very serious threat for ME patients. If BSS replaces MUS without recommending those criteria, not much will change. But if it replaces MUS with those criteria - that will be catastrophic.

Here’s my article explaining how BSS in ICD-11-PHC is a combination of the basic idea of BDD plus the additional recommendation of BDS criteria.
https://www.researchgate.net/public...dibility_in_Research_and_Implementation/stats

 

These are the most recently published criteria for ICD-11 PHC's proposed BSS construct:

Presentation: Rosendale, M (2017). MUS becomes Bodily Stress Syndrome in the ICD-11 for primary care [3]:

Slides #22 and #23:




They are adapted from the original Lam et al proposals [1].

Note:

ICD-11 core BDD has no requirement for a specific number of symptoms nor that they are attributable to autonomic arousal (also, a single, chronic, distressing somatic/bodily symptom is admissible for BDD).

But for ICD-11 core BDD: "Typically, bodily distress disorder involves multiple bodily symptoms that may vary over time. Occasionally there is a single symptom—usually pain or fatigue—that is associated with the other features of the disorder."


Proposed ICD-11-PHC BSS: "If the symptoms are accounted for by a known physical disease this is not BSS"

But for ICD-11 core BDD: "If another health condition is causing or contributing to the symptoms, the degree of attention is clearly excessive in relation to its nature and progression."


1 T P Lam, D P Goldberg, A C Dowell, S Fortes, J K Mbatia, F A Minhas, M S Klinkman. Proposed new diagnoses of anxious depression and bodily stress syndrome in ICD-11-PHC: an international focus group study, Family Practice, Volume 30, Issue 1, February 2013, Pages 76–87, https://doi.org/10.1093/fampra/cms037

2 MASTER PROTOCOL Depression, Anxiety and Somatic Symptoms in Global Primary Care Settings: A Field Study for the ICD-11-PHC Version 2 for WHO Research Ethics Review Committee.
http://www.psychiatryresearchtrust.co.uk/protocols/WorldHealth14.pdf

3 Presentation: Rosendale, M (2017). MUS becomes Bodily Stress Syndrome in the ICD-11 for primary care

 

I don’t think Rosendal’s picture is objective. She has a strong investment in characterizing things in a way that’s favorable to BDS. And there is more recent research on behalf of WHO.

In any case, can I ask what it is you’re debating? You want to convince people that it’s not a good idea to stand against BDS criteria in the primary care ICD? If we can have criteria that don’t specifically target ME patients, wouldn’t that be better?

 

What I am saying is that the core construct for the proposed ICD-11 PHC is not essentially the same as ICD-11's BDD as you are asserting.

The core construct for BSS remains based on symptom clusters or patterns from body systems attributable to autonomic arousal or general symptoms of tiredness and exhaustion (whereas symptom clusters or patterns are not a requirement of BDD, where any bodily symptoms of any aetiology are admissible and where the conceptual focus has shifted to the patient's "excessive" psychobehavioural responses to their chronic distressing symptoms).

For BSS, the symptoms have to be "medically unexplained". BSS excludes symptoms accounted for by a known physical disease/general medical condition (whereas these are included under BDD).

For BSS, emotional or behavioural symptoms are not necessary for the diagnosis (whereas emotional or behavioural symptoms are a crucial feature of the BDD diagnosis).

[Edited for clarity]

 

Call for the "basic" or "simple" or "core" BSS and you are calling for a Fink BDS light.

 

Dr O'Leary asks:

It's unclear to me what Dr O'Leary means by the above. Who wants to convince people of the above?

My own position is:

SSD is very problematic for all patients, including ME, CFS patients [1-3].
BDD is very problematic for all patients, including ME, CFS patients [1-3].
Any flavour of BSS is very problematic for ME, CFS, IBS, FM and other patients with chronic multiple somatic/bodily symptoms; conditions and diseases that have been framed as functional somatic symptoms and syndromes; rare diseases and disorders; diseases that are difficult to diagnose etc.
BDS or any adapted version of BDS is very problematic for ME, CFS, IBS, FM and other patients with chronic multiple somatic/bodily symptoms.

I've yet to see evidence of proposed criteria for BSS that specifically exclude ME, CFS patients or list ME, CFS under Differential diagnoses - unless these are specifically excluded, ME and CFS patients will be at risk of being captured.


I consider it potentially misleading to refer to the ICD-11 PHC as the "primary care ICD" or the "quiet ICD-11" since this (non mandatory) ICD-11 PHC diagnostic and management guideline is proposed to contain just 27 mental disorders and no general medical diseases or conditions.


1 Allen Frances¹, Suzy Chapman². DSM-5 somatic symptom disorder mislabels medical illness as mental disorder. 1 Department of Psychiatry, Duke University 2 DxRevisionWatch.com. Aust N Z J Psychiatry. 2013 May;47(5):483-4. doi: 10.1177/0004867413484525 http://www.ncbi.nlm.nih.gov/pubmed/23653063

In collaboration with Professor Allen Frances, chair of DSM-IV task force:

2 Frances A. DSM-5 Somatic Symptom Disorder. J Nerv Ment Dis. 2013 Jun;201(6):530-1. doi: 10.1097/NMD.0b013e318294827c http://www.ncbi.nlm.nih.gov/pubmed/23719325

3 Frances A. The new somatic symptom disorder in DSM-5 risks mislabeling many people as mentally ill. BMJ. 2013 Mar 18;346:f1580. doi: 10.1136/bmj.f1580 http://www.ncbi.nlm.nih.gov/pubmed/23511949

 

Its fairly obvious that any combination of an alphabet soup label whose diagnostic criteria is...

everything we say is caused by non falsifiable "distress" is caused by such

.... is a disaster for anyone who walks in to a doctors office and a win for medical insurance providers the BPS school and benefits systems even when there's already a proven physical disease present already listed in the ICD.

They are saying in black and white that SSD BDD and BDS, whatever they settle on calling it, can be added at their will to any physical disease so how does it possibly offer any level of protection to people with ME?

 

Ok, I understand your point. And you're right - if the core BSS construct is the same as Fink BDS, then it's a bad idea to accept it. I think it's not the same though. I mean, the last two WHO studies involved separate investigations of the core construct and the "symptom cluster criteria" of BDS. In the most recent one, from Brazil last year, they set things up with this language:

BSS, the focus of the present study, is defined as characterized by four aspects: complaints of three or more persistent somatic symptoms that are distressing, result in significantly disability, interfere with daily functioning, and are not caused by a known physical pathology. These somatic symptoms may coincide with the symptoms included in any of the four clusters of symptoms originally proposed by Fink et al., or else with the symptoms described in any other system, as originally proposed in the category defined as “multisystem BDS” by Fink et al.​

Then the point of the study is to try to show that the core construct of BSS does indeed "coincide" with the symptom cluster criteria. This is supposed to prove that it's a good idea to go ahead with the plan of the second study, which was to implement the general BSS definition, and then add a "recommendation" that doctors should also use BDS symptom cluster criteria.

So the second study very clearly separated the two constructs. It had to, because in the first study doctors hated the BDS criteria so much. This is how I explain WHO's approach to the second study in my article:

The WHO working group acknowledged a “mixed
reaction” to the BDS-based formulation of bodily stress
syndrome in that 2013 study, and an intention to modify
the BSS construct in ways that would address physicians’
central concerns. Then in 2016 the working group
published an extensive field study on the use of BSS in
primary care settings around the globe [15]. With this
study the working group was careful to evaluate two
distinct sets of criteria. The first is a set of very simple
criteria adapted for use in primary care settings from the
diagnosis of bodily distress disorder proposed for the
main ICD-11. These require (1) three or more somatic
symptoms not considered by the treating PCP to have a
medical basis, and (2) excessive and unjustified anxiety
about health. In addition, this study sets out to “examine
the importance of the specific symptoms clusters
emphasized by Fink and colleagues based on work in
Denmark” [15]​

So in the second and third studies the WHO definitely distinguishes a core construct for BSS (which is similar to BDD and does not target ME) from the "symptom cluster criteria", which it wants to "recommend" for use along with the core construct. They had to do it this way because their first study in 2013 established that doctors just rejected the BDS criteria on their own.

So what they want to do, as of 2018, is to implement the criteria that are basically like BDD, and add a "recommendation" that doctors also apply BDS symptom cluster criteria. There is no scientific basis for that additional recommendation, because they have never attempted to address doctors' emphatic insistence that those criteria are reckless.

I'm so sorry, but I have a deadline for an article today, so I'll have to come back to this discussion tomorrow. Many thanks for your interesting challenges, Suzy.

 

To clarify: BSS and BDS cannot be added as a "bolt-on" diagnosis where symptoms are better explained by a general medical condition - but SSD and BDD can be added as bolt-ons.

Proposed ICD-11 PHC BSS: "If the symptoms are accounted for by a known physical disease this is not BSS."

Fink et al's (2010) BDS: "Medical and psychiatric differential diagnoses have to be excluded".

The issue is that the authors of BDS consider ME, CFS, IBS, FM et al not to be general medical conditions or diseases and BDS replaces CFS, FM and IBS with a single, unifying BDS diagnostic construct.


https://dxrevisionwatch.files.wordp...-bdd-bds-bss-in-classification-systems-v1.pdf

Comparison of SSD, BDD, BDS, BSS in classification systems Version 1 | July 2018, Chapman & Dimmock

Extract:

For ICD-11, most of ICD-10’s Somatoform disorders and Neurasthenia are being replaced by a single new category, Bodily distress disorder (BDD)¹. Although the terms “Bodily distress disorder” and “Bodily distress syndrome” (BDS) are often used synonymously, both the World Health Organization (WHO) and Professor Per Fink² have clarified that as defined for ICD-11, BDD is a conceptually different diagnosis. ICD-11's BDD and Fink’s BDS are differently characterized, have very different criteria and include different groups of patients.

For ICD-11, the BDD diagnosis requires both the presence of one or more distressing bodily symptoms, which can be either “medically unexplained” or caused by a general medical condition, and also “excessive, disproportionate or maladaptive” responses to the symptoms. BDD potentially captures a percentage of patients with CFS, ME³ or with other general medical conditions and diseases, if the clinician considers they also meet the criteria for an additional diagnosis of BDD.

In contrast, Fink’s BDS diagnosis requires physical symptom patterns from one or more body systems, for these symptoms to be “medically unexplained” and does not require any emotional or behavioural responses. Crucially, BDS includes CFS, ME, IBS and FM under a single, unifying diagnosis.

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

DSM-5's SSD is already in use (since 2013) and BDD has gone forward for the core ICD-11 [1][2].

1 https://onlinelibrary.wiley.com/doi/pdf/10.1002/wps.20635

2 ICD-11 MMS: https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/767044268

 

But that is not what I have said - I have not said the "core" BSS construct is the same as Fink's BDS. I have posted the Rosendal/PCCG Group presentation slides.

​

This is what I posted (from the Rosendal/PCCG Group presentation slides):



which I have not said is the same as the Fink et al (2007, 2010) BDS which is:





Note:

"complaints of three or more persistent somatic symptoms that are distressing, result in significantly disability, interfere with daily functioning, and are not caused by a known physical pathology"

I have highlighted above two features that differ from, and do not form part of the ICD-11 BDD disorder description and characterization. It is incorrect to say that the "core" or "basic" or "simple" BSS is basically like BDD, or is similar to BDD, or is essentially BDD.

Again, the "core" construct for BSS is not similar to BDD (which is closely aligned with DSM-5's SSD construct and both BDD and SSD have no requirement for exclusion of a general medical diagnosis - which is a key difference in conceptualization).

 

Comparison of key features of SSD, BDD and proposed BSS

PNG version: https://dxrevisionwatch.files.wordpress.com/2019/09/comp-ssd-bdd-bss-v2.png
PDF version: https://dxrevisionwatch.files.wordpress.com/2019/09/comparison-of-ssd-bdd-and-bss-v3.pdf




Adapted from Table: Comparison of SSD, BDD, BDS, BSS in classification systems, Version 1 | July 2018, Chapman & Dimmock
https://dxrevisionwatch.files.wordp...-bdd-bds-bss-in-classification-systems-v1.pdf


1 T P Lam, D P Goldberg, A C Dowell, S Fortes, J K Mbatia, F A Minhas, M S Klinkman. Proposed new diagnoses of anxious depression and bodily stress syndrome in ICD-11-PHC: an international focus group study, Family Practice, Volume 30, Issue 1, February 2013, Pages 76–87 https://doi.org/10.1093/fampra/cms037


Suzy Chapman, Dx Revision Watch, September 2019

 

I stand by my statement that the "core" or "simple" or "basic" iteration of proposed criteria for ICD-11 PHC's Bodily stress syndrome (BSS) is not "similar to" or "essentially the same as" the ICD-11 Bodily distress disorder (BDD) construct in conceptualization, essential features, disorder description and characterization.

Key differences being:

a) BDD can be applied in association with general medical diagnoses, since the concept of "medically unexplained" is done away with and symptom aetiology is irrelevant; whereas BSS can only be applied where symptoms are considered to be "medically unexplained". BDD and BSS are differently conceptualized and potentially capture different patient sets.

b) like SSD, psychobehavioural cognitions are crucial to meet the BDD diagnosis;

c) BDD has no requirement for a minimum number of symptoms (a single symptom of any aetiology, including pain or fatigue, may also meet the BDD diagnosis, if the patient is considered to meet the other essential features).


I would also suggest that Dr O'Leary refrains from including statements like the following in journal papers or other publications:


Diane O’Leary. Bodily distress syndrome:Concerns about scientific credibility in research and implementation. Journal of Biological Physics and Chemistry 18 (2018) 67–77, Received 4 April 2018; accepted 27 April 2018 doi: 10.4024/07LE18A.jbpc.18.02

Extract:

"For the last edition of the ICD, the WHO also
published a version specifically for use in primary care
(ICD-10-PHC),"

[SC: In 1996, the WHO published a diagnostic and management guideline for mental disorders for non mandatory use in primary care and low resource settings, comprising 25 common mental disorders which roughly corresponded to disorder categories within ICD-10's Chapter V. NB: No general medical conditions or disorders were included in this ICD-10 PHC publication.]

"...and it is within that manual that we find
the psychiatric diagnosis of medically unexplained
symptoms."

[SC: F45 Unexplained somatic complaints/Medically unexplained symptoms.]

"Though the current primary care ICD is
really just an abridged version of the general ICD,"

[SC: The ICD-10 PHC comprises an abridged and simplified version of 25 common mental disorders which have rough equivalence to mental disorder categories included within ICD-10's Chapter V and its companion speciality publication: the ICD-10 Classification of Mental and Behavioural Disorders: Clinical descriptions and diagnostic guidelines (aka the "Blue Book"). The "Blue Book" is intended for use by mental health professionals for general clinical, educational and service use*, whereas the ICD-10 Tabular List and Alphabetical Index are primarily intended for use by coders.

ICD-10 PHC was a clinical tool written in simpler language to assist non-mental health specialists in primary care settings and non medically trained health workers, and also intended for use in low resource settings and in low- to middle-income countries.]

"the WHO has been working to develop a more substantial
version for the upcoming edition, including a new mental
health manual that has been specifically designed for use
in primary care [57]:"

[SC: ICD-11 PHC (which has not yet been released) comprises 27 mental disorders considered to be most clinically relevant in primary care and low resource settings. It should be understood that it is not a "new mental health manual" included within a more substantial abridged version of the "general" ICD-11. There is no abridged version of the "general" ICD-11 under development.

Like the ICD-10 PHC (1996), this revised diagnostic and management guideline won’t be mandatory for use by member states, although the WHO hopes this revised edition will have greater clinical utility than the ICD-10 PHC (1996).

For the development of the ICD-11 PHC, the WHO Department of Mental Health and Substance Abuse has been advised by an external working group known as the Primary Care Consultation Group (PCCG). The PCCG is chaired by Prof Sir David Goldberg, now in his mid 80s, who had overseen the development of the ICD-10 PHC (1996).

The WHO intends to make the ICD-11 PHC publication, once completed, free to download by anyone. There is currently no date available for its projected finalization or release and no draft texts have been released for stakeholder review and comment.]


A downloadable copy of the ICD-10 PHC (1996) is archived on the WHO Iris site here:

https://apps.who.int/iris/handle/10665/41852

World Health Organization. (‎1996)‎. Diagnostic and management guidelines for mental disorders in primary care : ICD-10. Chapter 5, Primary care version. World Health Organization. https://apps.who.int/iris/handle/10665/41852

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

*CDDG:

For ICD-11, the WHO Department of Mental Health and Substance Abuse has been developing the "Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD‐11 Mental, Behavioural and Neurodevelopmental Disorders".

The CDDG provides expanded clinical descriptions, essential (required) features, boundaries with other disorders and normality, differential diagnoses, additional features, culture-related features and codes for all mental and behavioural disorders commonly encountered in clinical psychiatry; it is intended for mental health professionals and for general clinical, educational and service use.

The CDDG does not provide diagnostic criteria. The essential (required) features are less rigid than DSM-5’s criteria sets and allow practitioners more flexibility to use clinical discretion when making a diagnosis.

The WHO has said that it plans to release the CDDG "as soon as possible" after WHA’s adoption of ICD-11 (endorsed in May 2019 to come into effect in January 2022). But it remains unclear whether the CDDG has been finalized or whether it will be released later this year or next year. See this post Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD‐11 Mental, Behavioural and Neurodevelopmental Disorders for more information.

Whilst clinicians have been able to register to review and provide feedback, no draft texts for the CDDG have been made available for public stakeholder scrutiny and comment and I have not had access, for example, to the most recent draft for the full clinical descriptions and diagnostic guidelines for ICD-11’s Bodily distress disorder (though I do have a copy of a 2016 iteration of the text).

[Edited for clarity]

 

Please note that I am now back in retirement.

 

Thank you mods for splitting the thread and for relocating these posts relating to ICD-11's BDD and ICD-11 PHC's proposed BSS under this existing "Updates on status of ICD-11 and changes to other classification and terminology systems" thread.


Resources:

Status of ICD-11 processed proposals v3, Suzy Chapman, April 2019

Comparison of Classification and Terminology Systems, Chapman & Dimmock, July 2018

Comparison of SSD, BDD, BDS, BSS in classification systems, Chapman & Dimmock, July 2018

Post: Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD‐11 Mental, Behavioural and Neurodevelopmental Disorders, June 28, 2019