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

Wow, this is just brilliant, @Dx Revision Watch! Thank you so much for the many years of hard work you’ve put in on this front.

 

Fantastic! You've done so much hard work on this and kept at it. Simply cannot thank you enough.

 

Amazing work @Dx Revision Watch!! Thank you infinitely for this much needed addition to ICD-11. Patients now have a tool to defend themselves against misdiagnosis by the whole biopsychosocial / functional disorder crew, especially in countries like Norway, UK, and many others where such approaches have harmed ME/CFS patients for years.

 

I find the whole ICD-11 and the subject of classification such a huge mind boggling confusion BUT I know that @Dx Revision Watch (Suzy) and Mary have worked solidly on this subject for years.

Thank You Both for all your hard work and for constantly ‘keeping an eye out’ for those sneaky revisions.




Edited: to clarify names

 

https://twitter.com/user/status/1218902742481039360

 

FANTASTIC achievement, thanks SO much for all your hard work over SO many years!

 

Thanks so much for all your work, and updating us on this. A timely reminder that sometimes persistently making strong arguments does pay off. This level of persistence is a marvel to me!

 

Thank you for your amazing perseverance. From the parent of an adolescent this is priceless and will mean so much to so many.

 

The asymmetry of bullshit in action. It shouldn't take this much effort to keep blatant nonsense at bay but at least reason prevailed. Frantastic work and thank you for all your efforts, both of you.

Even the very concepts in the acronym community will inevitably be deprecated as they serve no purpose whatsoever. I have no idea how serious medical professionals even accept them, they are likely the most vague, most non-specific concepts in the whole of medical science. And as an alternative to what are misrepresented as vague and non-specific symptoms this looks awful. Self-consistency isn't just expected, it's required.

 

I love this

 

@Dx Revision Watch

 

Great news! Gratitude for all your efforts in making this happen.

One curiosity which may have been covered. My reading ability is limited. Isn't hypochondriasis essentially synonymous with Bodily Distress Syndrome? I was surprised to see it too listed as an exclusion.

 

For ICD-11, Hypochondriasis is classified under

Obsessive-compulsive or related disorders

https://icd.who.int/dev11/f/en#/http://id.who.int/icd/entity/675329566

and secondary parented under Anxiety or fear-related disorders.


It is described thus:

"Hypochondriasis is characterized by persistent preoccupation with or fear about the possibility of having one or more serious, progressive or life-threatening diseases. The preoccupation is associated with catastrophic misinterpretation of bodily signs or symptoms, including normal or commonplace sensations, and is manifest either in repetitive and excessive health-related behaviours or in maladaptive avoidance behaviours related to health. The preoccupation or fear is not simply a reasonable concern related to a specific context of the patient, and persists or reoccurs despite appropriate medical evaluation and reassurance. The symptoms result in significant distress or significant impairment in personal, family, social, educational, occupational or other important areas of functioning."​

Bodily distress disorder has a reciprocal exclusion under Hypochondriasis.


For DSM-5, published May 2013, the DSM-IV term "Hypochondriasis" was revised to "Illness Anxiety Disorder" (comparison table between DSM-IV and DSM-5) and again, it is defined separately from "Somatic Symptom Disorder", has a discrete criteria set but is listed under the Somatic Symptom and Related Disorders class.

Somatic Symptom Disorder (SSD) is listed in the DSM-5 Illness Anxiety Disorder guidance text under "Differential Diagnosis" (with the guidance that SSD is diagnosed when significant somatic symptoms are present. In contract, individuals with illness anxiety disorder have minimal somatic symptoms and are primarily concerned with the idea they are ill).

DSM-5:

Somatic Symptom and Related Disorders

Somatic Symptom Disorder
Illness Anxiety Disorder
Conversion Disorder (Functional Neurological Symptom Disorder)
Psychological Factors Affecting Other Medical Conditions
Factitious Disorder
Other Specified Somatic Symptom and Related Disorder
Unspecified Somatic Symptom and Related Disorder​

You can compare criteria for DSM-5's Illness Anxiety Disorder and Somatic Symptom Disorder on this site: http://www.workingfit.co.uk/medical...s/dsm-5-somatic-symptom-and-related-disorders


Both Bodily distress disorder and DSM-5's SSD are focused on "excessive" psychobehavioural responses to chronic, distressing somatic (physical) symptoms - but expand the potential populations captured, since they can be applied in association with diagnosed general medical conditions - ie, there is no longer the requirement for the physical symptoms to be "medically unexplained".

So a diagnosis of SSD or ICD-11's BDD can be applied in association with diagnosed cancer, angina, diabetes, cardiovascular disease etc and the so-called "functional somatic syndromes."

(In the DSM-5 field trials, around 15% of the diagnosed cancer and cardiovascular disease study group met the criteria for an additional diagnosis of SSD. For the "functional somatic" group comprising people with "irritable bowel" and "chronic widespread pain" - a term used synonymously with fibromyalgia - about 26% met the criteria for an additional diagnosis of SSD.)


ICD-11's (brief) description of BDD:

"Bodily distress disorder is characterized by the presence of bodily symptoms that are distressing to the individual and excessive attention directed toward the symptoms, which may be manifest by repeated contact with health care providers. 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. Excessive attention is not alleviated by appropriate clinical examination and investigations and appropriate reassurance. Bodily symptoms are persistent, being present on most days for at least several months. 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."​

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Edited above to correct an omission and insert additional content re the DSM-5 field trial findings:

For ICD-11, Hypochondriasis is classified under the

Obsessive-compulsive or related disorders

block:

https://icd.who.int/dev11/f/en#/http://id.who.int/icd/entity/675329566

and secondary parented under the Anxiety or fear-related disorders block.

 

You made my day! Thank you so much for all your hard work and incredible persistence.

 

A little more on ICD-11 and Hypochondriasis that I did not have time for late last night:

For ICD-10, the concept term was "Hypochondriacal disorder" and is it classified under the F45 Somatoform disorders category block (at F45.2).

For ICD-11, the concept term was revised to "Hypochondriasis (Health anxiety disorder)".

Subsequently, "(Health anxiety disorder)" was dropped from the title concept term and instead, the terms "Health anxiety disorder", "Illness anxiety disorder", "hypochondria", and "hypochondriacal disorder" were listed under Synonyms under "Hypochondriacal disorder".


Back in 2012, the S3DWG working group that had responsibility for making recommendations for the revision of the ICD-10 Somatoform disorders block and F48.0 Neurasthenia had discussed the possibility of including Hypochondriasis under Mild Bodily distress disorder based on the group's perceived similarities between their essential features [1].

1 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]

However, Hypochondriasis was retained under the Obsessive-compulsive or related disorders block (with secondary parenting under Anxiety or fear-related disorders block) and is a Differential diagnosis to Bodily distress disorder - though you are correct in identifying a degree of conceptual overlap between these two disorder constructs.


For ICD-11, the WHO Department of Mental Health and Substance Abuse has been drafting the "Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD‐11 Mental, Behavioural and Neurodevelopmental Disorders" (ICD-11's equivalent publication to the ICD-10 "Blue Book").

The CDDG will provide 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.

WHO has said it planned to release the CDDG "as soon as possible" after WHA's adoption of ICD-11 (which took place in May 2019). But it remains unclear whether the CDDG has been finalized yet. (I am given to understand that some field trial results were still in the process of being evaluated late last year. But I am anticipating that the CDDG will be publicly released and free to download at some point later this year.)

The draft texts for the CDDG aren't public domain but I have a copy of the draft for the expanded disorder descriptions, as the draft texts had stood in 2016. Two brief extracts below, with the caveat that the texts may have undergone some revision since their 2016 iterations:


For Hypochondriasis:

Boundary with Other Disorders and Normality

Boundaries with Normality (Threshold):​

• The preoccupation or fear is not simply a reasonable concern related to a circumscribed situation (e.g., awaiting results of testing for a serious illness) and persists or reoccurs despite appropriate medical evaluation and reassurance.

• If a chronic or acute medical condition is present, or the individual is at high risk for developing a medical condition (e.g., due to high genetic risk, a recent exposure to a communicable disease), preoccupations related to such conditions are common and a high threshold should be used for a diagnosis of Hypochondriasis. The diagnosis of Hypochondriasis should only be made if the degree of preoccupation and repetitive health-related behaviours or avoidance are clearly excessive and disproportionate.

Boundaries with Other Disorders and Conditions (Differential Diagnosis):

Boundary with Bodily Distress Disorder: Bodily Distress Disorder is characterized by the presence of bodily symptoms that are distressing to the individual and to which excessive attention is directed, such as dwelling on the severity of the symptoms and repeatedly visiting health care providers. While some individuals with Hypochondriasis may experience bodily symptoms that cause distress and for which they may seek medical attention, their main concern in doing so is the fear that the symptoms are indicative of having a serious, progressive or life-threatening illness. In contrast, individuals with Bodily Distress Disorder are typically preoccupied with the bodily symptoms themselves and the impact they have on their lives, and while they may seek out health care providers who can determine the cause of their symptoms, they do so in order to get relief from the symptoms, not to disconfirm the belief that they have a serious medical illness.​

For Bodily distress disorder:

Boundary with Other Disorders and Normality​

Boundaries with Normality (Threshold):

• The experience of bodily symptoms and occasional concern about them is normal. However, persons with Bodily Distress Disorder report greater distress about their bodily symptoms than would generally be regarded as proportional to the nature of the symptoms, and their excessive attention to their symptoms is not alleviated by appropriate clinical examination and investigations and reassurance by health care providers.

• Persons with Bodily Distress Disorder who also have a medical condition that may be causing or contributing to the symptoms exhibit greater preoccupation with symptoms and greater functional impairment than those who have a medical condition that is similar in nature and severity without concurrent Bodily Distress Disorder. Furthermore, the number of bodily symptoms reported often exceeds that usually associated with the medical condition.

Boundaries with Other Disorders and Conditions (Differential Diagnosis):

Boundary with Hypochondriasis (Health Anxiety Disorder): Unlike individuals with Hypochondriasis who are preoccupied with the possibility of having one or more serious, progressive, or life-threatening illnesses, individuals with Bodily Distress Disorder are typically preoccupied by the symptoms themselves and the impact of the symptoms on their lives. Individuals with Hypochondriasis may also seek medical attention, but their primary purpose is to obtain reassurance that they do not have the feared serious medical condition. Individuals with Bodily Distress Disorder typically seek medical attention in order to get relief from their symptoms, not to disconfirm the belief that they have a serious medical illness.​

 

I’d like to add my thanks and congratulations + DX. This is an incredible achievement especially since some people at WHO clearly wanted ME/CFS to be included under bodily distress syndrome, which surely would’ve been very bad news for patients.

I realised early on that I would never master the detail necessary to properly engage with this and have always been incredibly grateful for the fact that you were taking this on. I assume it was hard, tedious work and your patience and perseverance have been remarkable.

Thanks so much

 

Report, today, from Action for M.E.


https://www.actionforme.org.uk/news/update-on-me-in-who-latest-disease-classification

Update on M.E. in WHO's latest disease classification

January 20, 2020

After years of hard work by M.E. advocates Suzy Chapman and Mary Dimmock, the World Health Organisation (WHO) has doubled back on plans which would have made it even harder for people with M.E./CFS to get the medical care and support they need.

The WHO lists all known diseases in its International Classification of Diseases (ICD), using a system of diagnostic codes. Recent proposed changes to the ICD would have resulted in a new diagnosis of Bodily Distress Disorder replacing that of Medically Unexplained Symptoms, with additional criteria that would capture people with M.E./CFS and direct them through psychiatric care.

Thanks to Suzy and Mary's determined and tenacious challenges to this, setting out clear evidence, the WHO has now agreed to include M.E. and CFS in the "exclusions" criteria for the Bodily Distress Disorder classification. This means that health professionals must rule out M.E./CFS before they can diagnose Bodily Distress Disorder. You can read more about the huge amount of work that has gone into this by on Suzy's Dx Revision Watch blog.

Without this work, people with M.E. would have experienced even more misdiagnosis and misunderstanding, and we join the M.E. community in sharing our huge gratitude with Mary and Suzy.

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Edit: AfME subsequently revised their report. The revised version is here:

https://www.actionforme.org.uk/news/update-on-me-in-who-latest-disease-classification