Forward ME Group – Bodily Stress Syndrome

I can only speak for myself when I say it's just to complex for me to follow. All the more appreciation to you for being able and willing to follow up on this.

 

Who remembers the Pick 'n' Mix sweet counter at Woolies...


Image Copyright Suzy Chapman 2018

 

Should that list of names include "conversion disorder" as well?

 

As a classificatory term, DSM-IV's "Conversion disorder" was replaced for DSM-5 (published 2013) by the term

"Conversion disorder (Functional neurological symptom disorder)".

For ICD-11, the term "Functional neurological disorder" has been proposed by Stone, Shakir et al.

This term has been rejected by ICD Revision in favour of a parent block called, "Dissociative disorder of movement, sensation, or cognition" with

• Functional neurological disorders
• Functional neurological symptom disorder (Ed: for alignment with DSM-5)
• Conversion disorder (Ed: now considered by ICD Revision to be an obsolete term)

under Synonyms.

But next time I update the image, I can consider including "FND."

Note that many within the FND patient community are supportive of the use of the term "FND" for their own symptomatology as a replacement for "Conversion disorder" or "Dissociative disorder."

 

Yes sincere thanks Suzy for all your amazing work on this over years, really appreciated.

 

Thank you, Solstice and Daisymay.

 

No statement issued yet by the Countess of Mar and the "briefing document" remains up on the ME Research UK website and is also still on Forward-ME's website, with no caveats from either party.

I've emailed ME Research UK and suggested it would be appropriate under the circumstances to pull the document off the site, pending its review by the Countess of Mar.

 

Sorry ... find that rather amusing .

 

I was advised by the Countess of Mar, yesterday, that the Forward-ME Group is considering a response and that it should be posted on the Forward-ME website on Monday.

In the meantime, the document remains up on the website with no caveats.

 

Thanks again for all your meticulous work over the years, following this complicated process. Your perseverance and dedication is admirable.

I propose that all the above Pic'n'Mix be renamed YUMS. Yet to be Understood Medical Symptoms!

 

The ICD-10 PHC (or "primary care edition") of ICD-10 was for mental disorders only.

Rather than include several hundred ICD-10 core version mental disorders, it contains 26 of what were considered the most common mental disorders encountered in general practice and for use in some countries by, for example, clinically untrained staff, for teaching purposes and in low to medium resource countries where the use of the core ICD-10 publication wasn't practical.

The publication included disorder descriptions and guidance. Training packs were also produced with disorder cards and diagnosis and management guidance.

These are the 26 disorders included in the ICD-10 PHC.

The category, F45 Unexplained somatic complaints was later referred to as F45 Medically unexplained symptoms and was the corresponding term for the F45 Somatoform disorders block in Chapter V Mental and behavioural disorders chapter in the core ICD-10.

As you see in this table, the F45 and F48 Neurasthenia category are not being included in the revision for ICD-11 PHC.



These two categories are proposed by the external PCCG primary care advisory group to be replaced with the group's proposed "Bodily stress syndrome" category, which has been adapted from the Fink et al (2010) Bodily distress syndrome (BSD) construct.

Categories included in the primary care edition require a corresponding category (or category block) in the core version.

But the situation we have with the PCCG is that the group has been pushing since 2011 for a construct adapted from Fink et al (2010) BDS, whereas the separate work group for the core ICD-11, that is making recommendations for the revision of the ICD-10 F45 Somatoform disorders and F48.0 Neurasthenia, has proposed a new single disorder category that is closely aligned with DSM-5's Somatic symptom disorder (SSD).

So there is a lack of correspondence between the two sets of proposals and the two groups have not worked collaboratively and rarely has the work of one group been discussed by the other group.

(I've set this out several times before on other platforms, so bear with me, those of you who have heard it all before.)


For the next edition, ICD-11 PHC, 28 disorders are proposed to be included. And again, this edition will contain only mental disorder categories - no other abridged ICD chapters are included.

These 28 categories are proposed to be arranged in disorder groupings and the section names for the disorder groups and for the category terms that sit underneath them have undergone several iterations since 2011:



As you see from this image from a 2015 report on my site, initially the proposed replacement term for the category, "Unexplained somatic complaints/MUS" had been, 16 Bodily distress syndrome, under disorder group "Body distress disorders".

This was later revised to 15 Bodily stress syndrome - which is the term that is currently being recommended by the external work group.

(Note that other terms in the list may have also been revised since this 2012 list above was first published.)


The ICD-11 core version's BDD has already been added to SNOMED CT (in July 2017) as an exact match for ICD-11's BDD concept, to which it will be mapped in the cross terminology code mapping tool.

So we have the situation where for the core version of ICD-11, the Somatoform disorder categories are proposed to be replaced with a single construct, BDD, adapted from DSM-5's SSD, and SSD is listed under Synonyms.

But the primary care group persists with recommending a "Bodily stress syndrome" term, which has been adapted from the Fink et al (2010) Bodily distress syndrome criteria set and it keeps tweaking the proposed criteria.


If you were to range them left to right on a continuum, based on construct conceptualization and alignment of criteria, it would range like this:

<----------Fink "pure" BDS-------------------------------------------------------------------------------------DSM-5 "pure" SSD---------->​

BDS (Fink, 2010) BSS (ICD-11 primary care group) BSS (alternative criteria set) ------------BDD (ICD-11 core version) SSD (DSM-5)

 

YUMS it is, MEMarge. And thank you for your kind words.

 

It's like when someone offers you chocolates, only the chocolates left over are the ones with nuts and neither of you like nuts.

PS "Bodily stress syndrome" sounds completely meaningless. The word "stress" in general is extremely non-specific.

 

The word "Bodily" seems to have been included almost as an apology. Why don't they just be honest, call it "Mental stress syndrome", and have done with it?

 

Following my contact with ME Research UK website and also directly with Sue Waddle, the "briefing document" that was posted on ME Research UK's site on April 3, with no caveats, appears to have been removed from the website, this morning.

 

Currently already in use or being proposed for use in classification and terminology systems:

Somatic symptom disorder [DSM-5, published 2013, cross mapped to U.S.'s ICD-10-CM existing code F45.1]
Somatic symptom disorder [Added to U.S. ICD-10-CM in 2016 as inclusion term under existing F45.1 code]

Bodily distress disorder [ICD-11's proposed adaptation of SSD, due for release June 20, 2018]
Bodily distress disorder [Already added to SNOMED CT as exact match for ICD-11's proposed BDD construct by Mapping Project Team]


Bodily distress syndrome [Fink et al (2010), in use in Denmark and some other countries in research and clinical settings]*
Bodily distress disorder [the term that ICD-11 proposes for its SSD adaptation is already in use interchangeably for the divergent Fink BDS construct]

Bodily stress syndrome [proposed for ICD-11 PHC, the abridged primary care edition for 28 mental disorders, no ETA for completion]


The ICD-11 work group for BDD does not like the SSD term (or at least Frances Creed does not like the term). Also, there would be intellectual property issues for WHO if ICD-11 were to use the same term and identical criteria to SSD. APA Publishing owns the intellectual property rights to the textual descriptions for SSD and it also derives income from sale of the DSM-5 criteria sets.


The issue that the term that the ICD-11 S3DWG workgroup proposes for its SSD adaptation is already in use interchangeably for the divergent Fink BDS construct has been raised many times, by me, with ICD Revision. Also via my proposal:


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

MARCH 8, 2017

https://dxrevisionwatch.com/2017/03...oposed-new-category-bodily-distress-disorder/




"It would appear that the term “bodily distress disorder” can mean anything
anyone chooses it to mean – which might be admissible for Humpty Dumpty
but unsound classificatory practice for ICD-11."


*I would need to check, but I think it is the case that the Danish country extension for ICPC-2 that is used in many EU countries for primary care, has already added "Bodily distress syndrome" to its extension.

 

Originally, the PCCG primary care workgroup had proposed the term "Bodily distress syndrome" for its proposed construct. But unless Fink et al were agreeable to an adaptation of his BDS criteria set, which is already in use, it would be iffy for WHO to be applying the term to a criteria set that was an adaptation.

Fink pushed hard to get a BDS category into the core ICD-11, but this was rejected:

"To include the BDS/BSD diagnosis and all the relevant functional
somatic syndromes in a separate chapter in the ICD-11 would have been
optimal, but the WHO has rejected this option." [1]

1 Short communication. Per Fink. Syndromes of bodily distress or functional somatic syndromes - Where are we heading. Lecture on the occasion of receiving the Alison Creed award 2017. The Research Clinic for Functional Disorders and Psychosomatics, Aarhus University Hospital, Denmark. April 2017 http://dx.doi.org/10.1016/j.jpsychores.2017.04.012

 

ICD Revision Beta Comment and Proposal Mechanism:

January 2015

http://apps.who.int/classifications...lGroupId=c3a5ea34-6995-452e-9dde-dfda54ca930a

Personal comment (not on behalf of Mental Health TAG):

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

At the same time, there are reasons that the Working Group in this area was not happy with the term 'Somatic symptom disorder' and did not adopt it from DSM-5 proposals. Problems with this term include the fact that in the context of ICD it could describe a large majority of health conditions whose symptoms are, by definition, somatic. This was not an issue for DSM-5, as DSM-5 is only a classification of mental disorders.

However, it should be possible to arrive at some satisfactory terminology and I will discuss further with the Working Group.

Geoffrey Reed 2015-Jan-11 - 09:37 UTC

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

However, ICD Revision continues to propose to use the name "Bodily distress disorder" for the core version and as I say, this proposed ICD-11 term has already been added to the SNOMED CT terminology system and its country extensions in preparation for the release of an initial version of ICD-11 MMS in June.

Which means that although there is no BDD in ICD-10 which will continue to be used for a number of years, there is a BDD in SNOMED CT, where it is currently mapped to ICD-10's F45.9 Somatoform disorder, unspecified.

Not once, in any of its papers and progress reports has the S3DWG acknowledged the issue of the potential for confusion and conflation between its BDD and Fink's BDS/BDD.

 

In 2010, three years prior to the finalization and publication of DSM-5, Creed et al. had advanced:

"...Somatic symptom disorder is not a term that is likely to be embraced enthusiastically by doctors or patients; it has an uncertain core concept, dubious wide acceptability across cultures and does not promote multidisciplinary treatment. In our discussion, the terms which fit most closely the criteria we have set out above were the following: bodily distress (or stress) syndrome/disorder, psychosomatic or psychophysical disorder, functional (somatic) syndrome or disorder." [1]

1 Creed F, Guthrie E, Fink P, Henningsen P, Rief W, Sharpe M, White P. Is there a better term than “medically unexplained symptoms”? J Psychosom Res. 2010 Jan;68(1):5-8. doi:10.1016/j.jpsychores.2009.09.004. [PMID: 20004295]


Somatic symptom disorder went forward for DSM-5, but Creed got his preferred term "bodily distress (or stress) syndrome/disorder" into the ICD-11 core version, albeit applied to an SSD-like construct and criteria.

While the Goldberg led, primary care group, proposes, "bodily distress (or stress) syndrome/disorder" for its divergent construct.