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

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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.

Not in a position to comment; I took one look and fell to the floor with cross eyes. BDD? What? How? Going to rock in a corner for a while will be back when I have tried to understand why any medical person would be putting this idea forward.
 

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Suzy Chapman Owner of Dx Revision Watch
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Because the responses provided by WHO/ICD Revision to inform the Minister's Written Response (March 7) lacked clarity - a second Parliamentary Written Question:

A second Parliamentary Written Question was tabled, yesterday, by the Countess of Mar:


http://www.parliament.uk/business/p...nts/written-question/Lords/2017-03-16/HL6136/

Department of Health

HL6136

To ask Her Majesty’s Government, further to the Written Answer by Lord O’Shaughnessy on 7 March (HL5683), whether the proposal submitted for chronic fatigue, for which there is no current classification, includes the current classification for G93.3 – post-viral fatigue syndrome and benign myalgic encephalomyelitis; and whether it is intended that those definitions will be included in ICD 11 under neurological conditions.​
 
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Suzy Chapman Owner of Dx Revision Watch
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Not in a position to comment; I took one look and fell to the floor with cross eyes. BDD? What? How? Going to rock in a corner for a while will be back when I have tried to understand why any medical person would be putting this idea forward.

I don't have a lot of time, at the moment, due to ICD-11 related work, but briefly:

The disorder concept "Bodily distress disorder" is the recommendation of an external ICD Revision sub working group that reports to the Joint Task Force. The group is chaired by Prof Oye Gureje and was assembled several years ago.

The full membership isn't known, but the majority of the members will likely have been drawn from the field of psychosomatics and liaison psychiatry. Prof Francis Creed is a key member of the group.

The group is called the "Somatic Distress and Dissociative Disorders Working Group (S3DWG)" and they were charged with making recommendations for the revision of a number of ICD-10 Mental or behavioural disorders chapter categories.

The BDD disorder concept was proposed back in 2012.

It subsumes and replaces all the ICD-10 somatoform disorders and F48.0 Neurasthenia (apart from F45.2 Hypochondriasis which retains a discrete category).

The first paper setting out the group's emerging proposals was published in late 2012 [1]. Another paper was published in 2016 [2].

Despite the name, it is an adaptation - not of Fink et al. (2010) Bodily distress syndrome - but of the DSM-5's Somatic symptom disorder (SSD).

Like DSM-5's Somatic symptom disorder, the patient sets it is designed to capture are these:

a) the old somatoform disorders (apart from Hypochondriasis)
b) neurasthenia
c) a percentage of those with one of the so-called, functional somatic syndromes or with persistent, distressing bodily symptoms that may be associated with any general medical disorder, if the clinician considers the patient also meets the criteria for an additional diagnosis of "BDD."

In the SSD field trials,

Somatic symptom disorder captured 15% of the patients with cancer or cardiovascular disease study group*
26% with irritable bowel syndrome or fibromyalgia*
7% of the "healthy" study group*

*Unpublished data extracted from Joel E Dimsdale's presentation slides.


1 Creed F, Gureje O. Emerging themes in the revision of the classification of somatoform disorders. Int Rev Psychiatry 2012;24:556-67.

2 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]
 
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Suzy Chapman Owner of Dx Revision Watch
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Caveat: The text for this 2nd Written Question, as submitted to the Table Office, yesterday, had read:

"To ask Her Majesty’s Government, further to the Written Answer by Lord O’Shaughnessy on 7 March (HL5683), whether the proposal submitted for 'chronic fatigue', for which there is no current classification..."

The quotes have been omitted by the clerk. The reason for the quotes is because Dr Robert Jakob keeps using the term "chronic fatigue" in emails to me and this term was also used in the text of the Written Response which was received to the first Written Question.

As I have said to Dr Jakob (on March 11 via the Beta Proposal Mechanism):

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

"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..."​


 
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I'm a republican and I don't know how you feel about aristocratic honours, but if anyone in Britain deserves a knighthood it is you, Suzy Chapman. Thanks for all the work you've put into this. When I think about people like Wessely receiving all sorts of high honours and awards, it makes me sick when there are so many other deserving people who have actually been helping, not hindering.
 

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Suzy Chapman Owner of Dx Revision Watch
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I'm a republican and I don't know how you feel about aristocratic honours, but if anyone in Britain deserves a knighthood it is you, Suzy Chapman. Thanks for all the work you've put into this. When I think about people like Wessely receiving all sorts of high honours and awards, it makes me sick when there are so many other deserving people who have actually been helping, not hindering.

Gosh, thank you, dyfalbarhau.

I must admit I quite fancy the sound of "Dame Suzy Chapman" - though that does not sound anything like as interesting as "Dame Suzi Leather."
 

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Suzy Chapman Owner of Dx Revision Watch
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Email in from Dr Jakob, this afternoon, in response to an email on March 7, requesting clarifications following the Written Response to the first Parliamentary Question:


My response:

Dear Dr Jakob,

Thank you for your clarification.

I note that you have not addressed the following:

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?

Kind regards,

Suzy Chapman

I've had specialist endodontic work that was more fun than is....
 
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Suzy Chapman Owner of Dx Revision Watch
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In 2010, ICD Revision published an internal discussion document proposing the concept of a potential new chapter in ICD-11 for Multisystem disorders. This concept was later rejected and there are no plans that I am aware of for an additional chapter for Multisystem disorders.

Diseases that span more than one chapter, for example, skin cancers are both Neoplasms and Diseases of the skin, can be primary parented under one chapter and secondary parented under another chapter.

In some cases, a disease or disorder may be secondary parented under another parent within the same chapter. An example of this is Hypochondriasis which is parented under two parent classes:

2010 Multisystem disorders Discussion document:

https://dxrevisionwatch.files.wordp...tions20on20multisystem_diseases_201008181.doc
 

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Suzy Chapman Owner of Dx Revision Watch
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Dr Jakob wasn't asked to clarify whether chronic fatigue syndrome would be "lumped under" the Symptoms, signs chapter.

What he was asked to clarify, is what he had meant by

"the proposal submitted for chronic fatigue"


since there is no "chronic fatigue" in the Beta draft and no proposal for "chronic fatigue" in the Proposals Mechanism and the only proposal I have submitted for the Fatigue category was for Exclusions, back in December 2014.

ICD Revision would have found it difficult to justify classification of one or more of the legacy terms under Symptoms, signs chapter.

This is the current text which accompanies the Symptoms, signs chapter:

Symptoms, signs or clinical findings, not elsewhere classified

Definition

Clinical findings include those found using physical, laboratory and imaging techniques.

Diseases can manifest in many ways and in different body systems. Such specific manifestations may be a reason for treatment or encounter, with or without identifying or addressing the underlying condition.

Categories in this chapter include the less well-defined conditions and symptoms that, without the necessary study of the case to establish a final diagnosis, could be designated 'not otherwise specified', 'unknown aetiology' or 'transient'.

The conditions and signs or symptoms included in this chapter consist of:

- cases for which no more specific diagnosis can be made even after all the facts bearing on the case have been investigated;

- signs or symptoms existing at the time of initial encounter that proved to be transient and whose causes could not be determined;

- provisional diagnoses in a patient who failed to return for further investigation or care;

- cases referred elsewhere for investigation or treatment before the diagnosis was made;

- cases in which a more precise diagnosis was not available for any other reason;

- certain symptoms, for which supplementary information is provided, that represent important problems in medical care in their own right.

These categories should be used in conjunction with a code from another chapter that identifies the underlying condition.

-----------

And as for "extensive communications" well, little communication would have been necessary over the past 4 years, if TAG Neurology had not elected to obscure its deliberations from the public version of the Beta draft.
 

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Suzy Chapman Owner of Dx Revision Watch
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If anyone is thinking of "opening a book":

Under Diseases of the nervous system:

1) Chronic fatigue syndrome as Concept Title; BME under Inclusions; PVFS under Synonyms.

2) Chronic fatigue syndrome as Concept Title; BME under Inclusions; PVFS in Index only.

3) Chronic fatigue syndrome as Concept Ttle; BME and PVFS in Index only.

4) Consideration of SEID as new Concept Title; Chronic fatigue syndrome under Inclusions; BME and PVFS under Synonyms.

5) Consideration of SEID as new Concept Title; Chronic fatigue syndrome under Inclusions; BME and PVFS in Index only.

6) Consideration of SEID as new Concept Title; Chronic fatigue syndrome and BME and PVFS all under Synonyms.

7) Consideration of creating a new Parent class under Other disorders of the nervous system to replace Parent class, Other disorders of brain which is retired for ICD-11; place Chronic fatigue syndrome as Concept Title; BME and PVFS in Index only, under new Parent class.

I don't think there is much likelihood of TAG Neurology suggesting secondary parenting under the new chapter: Disease of the immune system.

I don't see there is any other chapter, at the moment, where the terms might comfortably be parked while we wait for the science to catch up.

Nothing is set in stone: the opinions of the Joint Task Force and WHO classification staff can and sometimes do override the recommendations of Topic Advisory Groups.

Once an early (and incomplete) version of ICD-11 has been released at some point after May 2018 (assuming no further postponement is under discussion), ICD-11 will be subject to an annual update and revision schedule. My understanding is that WHO intends to keep the platform open for submission of requests for additions, corrections, revisions in response to new scientific findings once a version has been released.
 

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Suzy Chapman Owner of Dx Revision Watch
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What have we learned in four years:

Recap of information out of Geneva for those coming new to the thread:

February 12, 2014: WHO: public statement "Fibromyalgia and ME/CFS are not included as Mental & Behavioural Disorders in ICD-10, there is no proposal to do so for ICD-11."

February, 14, 2014: Gregory Hartl, Head of PR/Social Media, WHO: "there is and never was any intention to [reclassify Fibromyalgia and ME/CFS as a Mental and Behavioural Disorder]."

July 24, 2014:
ICD Revision's Dr Geoffrey Reed: "There has been no proposal and no intention to include ME or other conditions such as fibromyalgia or chronic fatigue syndrome in the classification of mental disorders."

June 19, 2015: WHO, Dr Robert Jakob: "I can be crystal clear that there is no proposal to classify the terms under the Mental or behavioural disorders chapter."

June 19, 2015: WHO, Dr Robert Jakob, Proposal Mechanism, Fatigue category: "work on this topic is ongoing" [in response to my December 2014 request for exclusions for the G93.3 legacy terms]

February 22, 2017
: Dr C Chute, ICD-11 MM Joint Task Force member; chair of Revision Steering Group: This was discussed today in Köln. Evidently, there are plans to include these terms as [redacted as unconfirmed and may be incomplete; JTF will neither confirm nor deny].

February 27, 2017:
Via Parliamentary WR to WQ: "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." [Unclear what this statement means; clarification requested but none provided.]

March 10, 2017: WHO, Dr Robert Jakob via Proposal Mechanism: "work is still progressing to identify the correct place in the new structures of ICD-11"

March 17, 2017: "Chronic fatigue syndrome will not be lumped into the chapter ‘signs and symptoms’. We certainly will share the rationale for any decision."

Queries concerning ETA for release of proposals and the deadline for receipt of stakeholder comments on any proposals that may be released prior to March 30 or released on April 4, in the frozen version, remain unanswered.
 
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Suzy Chapman Owner of Dx Revision Watch
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Another Written Question from the Countess of Mar

http://www.parliament.uk/business/p...nts/written-question/Lords/2017-03-20/HL6204/

Written question HL6204: The Countess of Mar 20-03-2017
Q
Asked by The Countess of Mar
Asked on: 20 March 2017
Department of Health

HL6204


To ask Her Majesty’s Government upon what scientific basis the Expert Reference Group for the Joint Commissioning Panel for Mental Health (JCPMH), in publishing their guide on Commissioning for Medically Unexplained Symptoms (MUS), based their decision that myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) should be categorised as a functional somatic disorder, given that the World Health Organisation’s mandatory International Classification of Diseases categorises the illness as neurological under ICD 10-G93.3, and that the National Institute for Health and Care Excellence (NICE) has not listed ME/CFS as a functional somatic disorder; and whether they will withdraw the recommendation for cognitive behaviour therapy and graded exercise to be commissioned for patients with ME/CFS until NICE Guideline CG53 is reviewed.

 
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Suzy Chapman Owner of Dx Revision Watch
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A very good example here of how ICD-11 BDD is already being confused and conflated with Fink's BDS:

http://www.dailymail.co.uk/health/article-4332866/Why-doctors-t-dismiss-symptoms-mind.html

Why doctors can no longer dismiss symptoms as 'all in the mind': Experts reveal medically unexplained conditions can still have a physical cause
  • In as many one fifth of cases, doctors find no explanation for patients' symptoms
  • Though the symptoms are real, they often end up being told it's all in their mind
  • Now, experts reveal these are signs of a new condition, bodily distress syndrome
By Roger Dobson for the Daily Mail

Published: 22:08, 20 March 2017 | Updated: 22:08, 20 March 2017

For patients who have no obvious physical cause for their symptoms, trying to get a diagnosis or effective treatment can be a nightmare.

It's a common problem: in as many as one in five cases, doctors find no explanation for a patient's symptoms or for their severity.

Though the symptoms are real, patients can end up being told it's all in their mind.

This will ring all too true for many with conditions such as chronic fatigue, fibro-myalgia (characterised by widespread pain and fatigue), irritable bowel syndrome, unexplained chest pain or interstitial cystitis (not caused by infection).

Not only do these problems, known as functional disorders, cause misery, but they cost the NHS a fortune.

Treating medically unexplained symptoms cost £3.1 billion a year, more than stroke or heart disease.

But research suggests these different diagnoses are all types of a single illness, bodily distress syndrome (BDS) — a new condition that's just been included in the draft of the next World Health Organisation's International Classification of Diseases, the diagnostic bible for doctors.

(No, it has not. It is Bodily distress disorder, in ICD-11, which, as defined by ICD-11, is a virtual clone of DSM-5's SSD - different definition; different criteria and captures different patient population.)

A study in the British Journal of General Practice last year, based on 1,400 patients, found around 17 per cent would meet the criteria for BDS.

The term is used to describe medically unexplained symptoms, and recognises illness has roots in the body and mind, paving the way for new treatments for many patients who may have been told symptoms were 'in their heads'.

'There is increasing awareness that we have to treat the whole person and BDS is a recognition of that,' says Dr Alastair Santhouse, a consultant psychiatrist at the South London and Maudsley NHS Foundation Trust.

'The fact is disorders do not have to be either physical or psychological: just because we have physical symptoms doesn't necessarily mean the cause is physical.

'With tension headache, the pain is reduced with paracetamol, but we also know it's reduced if we treat the underlying stress.

'Many patients with bodily symptoms don't get a physical explanation and, therefore, often feel it is seen as being 'in the mind' and perhaps is taken less seriously.

Recognising we need to look at conditions holistically will move us away from the fallacy that if there is no obvious cause, symptoms must be imagined.'

One theory is that people with BDS have an increased sensitivity to bodily signals, and the brain's filtering system, which screens out unimportant messages, stops working properly: it's these signals that become the symptoms.


Anxiety may partially trigger this. Patients then pay extra attention to the signals, becoming more anxious; this anxiety leads to more severe physical symptoms, which add to the worry in a vicious cycle.

The symptoms, which are real but have no measurable physical basis, become the problem.

Dr Lene Toscano, from Aarhus University Hospital in Denmark, which carries out pioneering work on BDS, says: 'In effect, the symptoms are the disease, yet patients can be told they are imaginary or it's a mental problem.

'Treating the condition as though it were 100 per cent physical or 100 per cent psychological will not help them get better.'

The Aarhus team found there is an overlap in symptoms between different disorders: a patient with fibromyalgia, who experiences widespread pains, may suffer fatigue, while someone with chronic fatigue syndrome can have muscle aches.

Professor Per Fink, who leads the research clinic for functional disorders and psycho-somatics at Aarhus, says: 'Grouping such patients under BDS would help them understand the symptoms and treat them.'

Cognitive behavioural therapy, which aims to change a patient's behaviour by altering the way they think, can help.

He says BDS can also be treated with exercise and antidepressants (which is thought to change the way in which the symptoms are experienced in the brain so they are less bothersome).

Professor Peter Whorwell, a gastroenterologist at the University Hospital of South Manchester, says: 'I'm sure there's a strong interaction between mind and body in functional disorders, but that applies to most diseases.

'We do need new approaches to managing functional disorders.

'However, including the word 'distress' in the title is a backward step, as it implies a strong psychological component, and these patients are sick of being told it is all in their head.'
 
Messages
18
I don't have a lot of time, at the moment, due to ICD-11 related work, but briefly:

The disorder concept "Bodily distress disorder" is the recommendation of an external ICD Revision sub working group that reports to the Joint Task Force. The group is chaired by Prof Oye Gureje and was assembled several years ago.

The full membership isn't known, but the majority of the members will likely have been drawn from the field of psychosomatics and liaison psychiatry. Prof Francis Creed is a key member of the group.

The group is called the "Somatic Distress and Dissociative Disorders Working Group (S3DWG)" and they were charged with making recommendations for the revision of a number of ICD-10 Mental or behavioural disorders chapter categories.

The BDD disorder concept was proposed back in 2012.

It subsumes and replaces all the ICD-10 somatoform disorders and F48.0 Neurasthenia (apart from F45.2 Hypochondriasis which retains a discrete category).

The first paper setting out the group's emerging proposals was published in late 2012 [1]. Another paper was published in 2016 [2].

Despite the name, it is an adaptation - not of Fink et al. (2010) Bodily distress syndrome - but of the DSM-5's Somatic symptom disorder (SSD).

Like DSM-5's Somatic symptom disorder, the patient sets it is designed to capture are these:

a) the old somatoform disorders (apart from Hypochondriasis)
b) neurasthenia
c) a percentage of those with one of the so-called, functional somatic syndromes or with persistent, distressing bodily symptoms that may be associated with any general medical disorder, if the clinician considers the patient also meets the criteria for an additional diagnosis of "BDD."

In the SSD field trials,

Somatic symptom disorder captured 15% of the patients with cancer or cardiovascular disease study group*
26% with irritable bowel syndrome or fibromyalgia*
7% of the "healthy" study group*

*Unpublished data extracted from Joel E Dimsdale's presentation slides.


1 Creed F, Gureje O. Emerging themes in the revision of the classification of somatoform disorders. Int Rev Psychiatry 2012;24:556-67.

2 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]
Nope couldn't get my head around the sillyness gone back to corner to rock in corner, dropped to the floor at: Somatic symptom disorder captured 15% of the patients with cancer or cardiovascular disease study group* When I have stopped rocking will have a look... will try to have a look
 

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Suzy Chapman Owner of Dx Revision Watch
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There is a comment facility under Proposals in the Beta Proposals Mechanism.

I am adding more examples of claims that ICD-11 is including Fink's BDS under my submission for the Deletion of Bodily distress disorder:

You will need to be registered for the Beta to see Proposals and Comments to Proposals:

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

but my submission can be read on my website here:

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


Comments:


A good example, here, of a Netherlands company that provides psychobehavioural therapies to clients with long-term physical and/or psychological symptoms who are working towards a return to employment asserting that "Bodily Distress Syndrome" is included in ICD-11:

https://condite.nl/artikelen_post/bodily-distress-syndrome-een-nieuwe-diagnose/

"BDS in international statistical classification of diseases and related health problems (ICD)

BDS is already included in the draft version of the ICD-11..."


Suzy Chapman 2017-Mar-09 - 21:50 UTC

_____________________________________

Another very good example here of how ICD-11's BDD is already being confused and conflated with Fink's BDS, this example in UK mainstream media (Daily Mail):

http://www.dailymail.co.uk/health/article-4332866/Why-doctors-t-dismiss-symptoms-mind.html

March 21, 2017

"But research suggests these different diagnoses are all types of a single illness, bodily distress syndrome (BDS) — a new condition that's just been included in the draft of the next World Health Organisation's International Classification of Diseases, the diagnostic bible for doctors."

Suzy Chapman 2017-Mar-21 - 14:39 UTC

 
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