Something rotten in the state of Denmark: Karina Hansen’s story

Clarification notice
Reports and updates on Dx Revision Watch site on the Hansen family’s situation are being published as provided by, and in consultation with, Rebecca Hansen, Chairman, ME Foreningen, Danmark (ME Association, Denmark), or edited from reports as provided by Ms Hansen.
Dx Revision Watch site has no connection with any petitions or initiatives, or with any social media platforms or other platforms set up to promote petitions or initiatives, or to otherwise raise awareness of the Hansen family’s situation. The use of any links to content on Dx Revision Watch does not imply endorsement of, or association with any initiatives other than the ME Foreningen, Danmark (ME Association, Denmark) Postcard to Karina Campaign.
All enquiries in relation to petitions or other initiatives, social media platforms, or any other platforms associated with them should be addressed directly to the organizers, sponsors or owners responsible for them.

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For update to this post see:

Human Rights denied: Something rotten in the state of Denmark: Karina Hansen’s story: Update 1: http://wp.me/pKrrB-35o

Menneskerettighederne nægtet: Noget råddent i staten Danmark: Karina Hansen: Opdater 1: http://wp.me/pKrrB-36e  (Update reports in English and Danish)
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“How can I get out of here? I can’t take this.”

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KH5

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Something rotten in the state of Denmark:

Karina Hansen’s story

Karina Hansen is 24. She has been completely bedridden since 2009.

In February, this year, Karina was forcibly removed from her home and committed to a hospital. The family is still waiting for a legal explanation for why she was removed.

Karina suffers from severe ME and her family believes she is getting worse.

Karina removed from home

On February 12, 2013, five policemen from Holstebro county, Denmark, arrived at Karina’s house and forcibly removed her from her bedroom.

Two doctors, a locksmith and two social workers were also present.

Karina called for her mother’s help, but her mother was blocked by the police from aiding her. Karina used her mobile phone for the first time in years to call her mother, her father, her cousin and her sister, Janni. Karina is so ill that she can usually only speak in one or two word sentences, but during her removal she managed to call her father and say: Help Dad, in my room, and to her sister: Help, Janni I don’t know where they are taking me.

Karina’s mother could not answer her phone because she was surrounded by policemen.

Karina was driven off to a hospital in an ambulance. Her parents were not told where she was being taken or why they were taking her away. They were given no paperwork.

Later that day, her parents received a phone call. They were told that Karina was at Hammel Neurocenter and that someone would call them every day at 10am to tell them how Karina was doing and that no one would be allowed to visit their daughter for 14 days.

On the morning of February 13, Karina managed to call her mother from her mobile phone. She said: How can I get out of here? I can’t take this. (Hvordan kan jeg komme væk herfra? Jeg kan ikke klare det.) Then the connection was cut.

A few days later, Karina’s parents received a letter from a psychiatrist, Nils Balle Christensen, which said that he would be in charge of Karina’s treatment at Hammel Neurocenter. He also wrote that because “of her condition,” Karina was not allowed visitors for two weeks. That ban on visitors was later extended to three weeks because Dr Christensen was on vacation.

Nils Balle Christensen works at the Aarhus Research Clinic for Functional Disorders and Psychosomatics. He and his boss, Per Fink, believe that ME is a functional disorder. The treatments the clinic recommends are graded exercise therapy (GET), cognitive behavioural therapy (CBT), “mindfulness therapy,” and in some cases, antidepressants. In Denmark, a functional disorder is understood to be a psychosomatic illness.

The psychiatrists at this clinic are considered to have no experience with severely ill ME patients and the Hansen family and ME Foreningen, Danmark fear that if Karina is being treated incorrectly this may lead to a severe and permanent worsening of her condition.

Karina’s parents have not been permitted to see their daughter for three months

The family visited the Neurocenter on April 1 to try to visit Karina, but the parents were not allowed to see her. Karina’s sister, Janni, who is a nurse, was allowed to see Karina for a few minutes. A staff member followed Janni into the room. Janni said that Karina was extremely pale, was unable to talk, and did not show signs that she recognized her sister.

In Janni’s opinion, Karina’s condition is worse now than before she was hospitalized.

Why was Karina forcibly removed?

Karina’s parents and lawyer have yet to receive any official paperwork from any government body or clinician about the reason for her removal. They have received no treatment plan or copies of Karina’s medical reports.

No charges have been made against Karina’s parents. The case has never been heard by a court.

Karina’s parents do not know if or when they will be allowed to see their daughter or if or when she will be allowed to come home. Her parents and her lawyer have obtained power of attorney for Karina, but this is being ignored.

The regional state administrations for Mid-Jutland (Statsforvaltningen Midtjylland) are trying to appoint someone as guardian for Karina.

The only information the family receives comes from Jens Gyring, senior doctor at Hammel Neurocenter. He now calls Karina’s father twice a week and tells him how Karina is.

But the parents are finding it difficult to trust what they are told because they are being given conflicting information. Dr Christensen says Karina is improving every day, but Jens Gyring says there is no change.

Karina’s sister, Janni, thinks her sister is deteriorating.

Jens Grying says he is taking instructions about Karina’s care from Dr Christensen and that the treatment given is a rehabilitation programme.

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There are many unanswered questions

Karina’s mother was paid by the county to take care of her daughter and there was never any report of neglect. After Karina was taken away, her mother was fired from her job on the grounds that the caregiver duties were no longer needed.

Which authority gave the order to remove Karina and by whom was it authorized?
What legislation was used to remove and detain her as an involuntary patient in a hospital?
Why are the parents and their lawyer not permitted to see paperwork about the case?
Why have the parents not been allowed to visit?
Are there any charges levelled against the parents?
What is the treatment plan for Karina? The hospital requires that a treatment plan be made on admission.
Why all the secrecy?

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Meeting with Liselott Blixt

On April 4, Karina’s parents and two representatives from ME Foreningen, Danmark met with parliament member, Liselott Blixt, who agreed to help to get answers to the many questions in this case.

ME Foreningen, Danmark had been waiting to publish information about Karina’s case until her parents and lawyer had received the official documents. But it is now obvious that these documents will not be released unless pressure is placed on the officials.

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ME Foreningen, Danmark campaign

A campaign was launched by ME Foreningen, Danmark for May 12th ME Awareness Week for sending postcards to Karina and also signing a petition in support of the Hansen family’s situation:

http://www.ipetitions.com/petition/postcardtokarina/

For information on where to send your postcard go to ME Foreningen, Danmark on Facebook

If you have a blog or a website, please link to this post or contact ME Foreningen, Danmark for a copy of the account and publish your own blog post. Post a link to this post on Facebook, Twitter, Listservs and forums.

Timeline

Karina Hansen was born in November 1988. She is now 24.

2004/5: Karina contracts mononucleosis, after which she succumbs to countless infections, including sinus infections, as well as severe gastritis. She received many courses of antibiotics. Her activity became very limited because of post exertional malaise. In 2006, Karina had a serious sinus infection and never fully recovered.

2008: Karina receives a diagnosis of Myalgic Encephalomyelitis/ME (ICD-10 G93.3) while at a Danish arthritis hospital, where she was admitted for rehabilitation: exercise and cognitive behavioural therapy (CBT). She was there for 17 days and could never do more than one hour of activity a day.

During the course of her illness, Karina was examined several times by psychiatrists who found no evidence of mental illness. One psychiatrist wrote that her symptoms were most likely caused by the mononucleosis.

Autumn 2009: Karina has an influenza vaccine after which she becomes completely bedridden. In March 2010, Karina’s mother took leave from work to take care of her daughter.

May 2010: Karina’s GP pressured her parents into admitting her to hospital for rehabilitation. By this time, Karina was so ill that she cried from the headaches when they talked to her. There appears to have been an attempt to detain her at the hospital by declaring her mentally unfit. But the medical officer wrote that the “psychiatry law enforcement provisions cannot be used.” She was allowed to go home after three days. Karina’s condition deteriorated after this hospitalization.

May 2010: Karina is seen for the first time by Dr Isager, who confirms the diagnosis of ME. Dr Isager is a Danish doctor who has seen hundreds of ME patients in his long career and has made home visits to many severely ill patients. In 2001, the Danish Ministry of Health wrote that Dr Isager was the Danish doctor with the most experience of ME and had about 250 patients at that time.

March 2011: Karina is seen by another doctor with experience in severe ME. This doctor reconfirmed the ME diagnosis. Karina’s parents worked with her new GP, with Dr Isager, and a nutritionist to try to give Karina the best treatment possible at home. Gut function tests were sent to the USA to try to find a treatment for Karina. There is no hospital in Denmark equipped to take care of severely ill ME patients.

A request was made to have a saline IV started in the home but the county did not cooperate. Karina received a special protein powder and a high iron diet to ensure her nutritional needs were met. Many ME patients do not tolerate iron supplements in pill form.

June 2011: Karina’s mother is hired by the county to be Karina’s caregiver.

May 2012: Sundhedssytrelsen (Danish National Board of Health) contacts two psychiatrists, Per Fink and Jens Nørbæk, about Karina. Karina’s case was presented to them over the phone and Jens Nørbæk stated that Karina must be in an insane-like state: “sindsyglignende tilstand.” These two psychiatrists are considered to have no knowledge of severe ME.

Based on these conversations, the Danish Board of Health put pressure on Karina’s GP to declare Karina psychologically ill and to sign commitment papers. Karina’s GP refused because Karina was not mentally ill. Karina’s GP then resigned as her doctor.

The Danish National Board of Health contacted Per Fink, lead clinician at The Research Clinic for Functional Disorders and Psychosomatics, and asked him to take charge of Karina’s case. The case was then given to another psychiatrist from the clinic, Nils Balle Christensen.

Karina and her parents did not want Dr Christensen as Karina’s doctor. They knew about the research clinic and did not feel the doctors had sufficient knowledge about ME to undertake Karina’s medical care. Karina and her parents said many times they did not want the psychiatric treatment that Dr Christensen was offering. They hired a private doctor to assist Dr Isager in Karina’s care. (Dr Isager is retired.)

February 12, 2013: Karina is forcibly removed from her home and put in the hospital under Dr Christensen’s care. She is now forced to receive the “treatment” she does not want.

May 12, 2013: For three months, Karina’s parents have been denied visits to see their daughter; denied documentation; denied answers to their questions.

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The Research Clinic for Functional Disorders and Psychosomatics, Aarhus, Denmark

According to a report by ME Foreningen, Danmark:

The Danish government has put this clinic in charge of taking care of all ME patients in Denmark. The doctors employed here are primarily psychiatrists or psychologists. The centre has spent millions of dollars working to create a new diagnosis, Bodily Distress Syndrome (BDS).

For information on Bodily Distress Syndrome see Part Two of Dx Revision Watch Post:
ICD-11 Beta draft and BDD, Per Fink and Bodily Distress Syndrome

They want to place ME and other illnesses like Fibromyalgia, IBS, chronic pelvic pains and PMS under their new diagnosis. Read about BDS, here, in English:

http://funktionellelidelser.dk/en/for-specialists-researchers/doctors/

Per Fink and his colleagues have been lobbying for their BDS concept to be included in revisions of classification systems.

According to ME Foreningen, Danmark, all treatment at this clinic is on a research basis and all patients receive the same treatment: cognitive behavioural therapy (CBT), graded exercise therapy (GET) and antidepressants. ME Foreningen, Danmark says it has contact with many patients who have ME, Fibromyalgia, IBS, etc but when they are referred to this clinic by their GP, their previous diagnosis is ignored and they are given a psychiatric diagnosis.

ME Foreningen, Danmark states it has many examples of patients who have been pressured by their doctors and case workers to go to this clinic. Patients have reported that their doctors or caseworkers believe this clinic has a proven treatment for ME, Fibromyalgia, IBS etc, so benefits will be denied unless this research treatment is tried. In the 14 years for which the clinic has been open, they only have documentation that they have seen 74 patients with chronic fatigue syndrome. Karina is the first severely ill ME patient that the clinic has had contact with.

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Report edited from an account provided by ME Foreningen, Danmark, with permission of the Hansen family.
For more information on the ME Association of Denmark’s postcard campaign go here on Facebook
For information on Bodily Distress Syndrome see Part Two of Dx Revision Watch Post:
ICD-11 Beta draft and BDD, Per Fink and Bodily Distress Syndrome
Something rotten in the state of Denmark: Karina Hansen’s story: http://wp.me/pKrrB-2Xc
Noget råddent i staten Danmark: Karina Hansen: http://wp.me/pKrrB-2Xc
Etwas ist faul in Dänemark: Karina Hansens Geschichte: http://wp.me/pKrrB-2Xc
Il y a quelque chose de pourri au royaume du Danemark: l’histoire de Karina Hansen: http://wp.me/pKrrB-2Xc

Somatic Symptom Disorder paper in Australian & New Zealand Journal of Psychiatry

Somatic Symptom Disorder paper (Frances and Chapman) published in May edition of Australian & New Zealand Journal of Psychiatry

Post #244 Shortlink: http://wp.me/pKrrB-2Wi

ANZJP is a subscription journal.

Commentary by Frances and Chapman discussing the over-inclusive DSM-5 Somatic Symptom Disorder criteria and potential implications for diverse patient groups. The paper concludes by advising clinicians not to use the new SSD diagnosis.

http://anp.sagepub.com/content/current

Commentaries

DSM-5 somatic symptom disorder mislabels medical illness as mental disorder

Aust N Z J Psychiatry May 2013 47: 483-484, doi:10.1177/0004867413484525

Allen Frances¹, Suzy Chapman²

1 Department of Psychiatry, Duke University
2 DxRevisionWatch.com

http://anp.sagepub.com/content/47/5/483.full
http://anp.sagepub.com/content/47/5/483.full.pdf+html

A further commentary on the Somatic Symptom Disorder criteria by Allen Frances, MD, who had chaired the Task Force for DSM-IV, is in press for the June 2013 edition of The Journal of Nervous and Mental Disease.

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A second paper, Catatonia from Kahlbaum to DSM-5, by David Healy, is also published in this month’s edition of ANZJP:

May 2013; 47 (5)

Perspectives

Viewpoint

David Healy

Catatonia from Kahlbaum to DSM-5

Aust N Z J Psychiatry May 2013 47: 412-416, doi:10.1177/0004867413486584

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Further reading

APA Somatic Symptom Disorder Fact Sheet

Somatic Chapter Drops Centrality Of Unexplained Medical Symptoms Psychiatric News, Mark Moran, March 1, 2013

Somatic Symptoms Criteria in DSM-5 Improve Diagnosis, Care David J Kupfer, MD, Chair, DSM-5 Task Force, defends the SSD construct, Huffington Post, February 8, 2013

The new somatic symptom disorder in DSM-5 risks mislabeling many people as mentally ill Allen Frances, MD, BMJ 2013;346:f1580 BMJ Press Release

Somatic Symptom Disorder could capture millions more under mental health diagnosis Suzy Chapman, May 26, 2012

Mislabeling Medical Illness As Mental Disorder Allen Frances, MD, Psychology Today, DSM 5 in Distress, December 8, 2012

Why Did DSM 5 Botch Somatic Symptom Disorder? Allen Frances, MD, Psychology Today, Saving Normal, February 6, 2013

New Psych Disorder Could Mislabel Sick as Mentally Ill Susan Donaldson James, ABC News, February 27, 2013

Dimsdale JE. Medically unexplained symptoms: a treacherous foundation for somatoform disorders? Psychiatr Clin North Am 2011;34:511-3. [PMID: 21889675]

‘Somatic Symptom Disorders in DSM-5: A step forward or a fall back?’ Eleanor Stein MD FRCP(C)

‘Somatic Symptom Disorders in DSM-5: A step forward or a fall back?’ Eleanor Stein MD FRCP(C) slide presentation

Post #233 Shortlink: http://wp.me/pKrrB-2Jt

Eleanor Stein MD FRCP(C) is a psychiatrist in private practice and a Clinical Assistant Professor in the Department of Psychiatry, University of Calgary, Canada.

In March, Dr Stein gave a presentation on the new Somatic Symptom Disorder category (as it had stood at the third draft) to the Alberta Psychiatric Association and has very kindly made her presentation slides available. These are in PDF format so no PowerPoint viewer is required.

Somatic Symptom Disorders in DSM-5 A step forward or a fall back?

Alberta Psychiatric Association March 23, 2013

 Click link for PDF document   SSD Stein Presentation March 2013

The American Psychiatric Association is not affiliated with nor endorses this presentation.

The next edition of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders unwraps next month; finalized criteria sets are embargoed until May 22.

Until then, you will have to make do with the DSM-5 Table of Contents and Highlights of Changes from DSM-IV-TR to DSM-5 and the fact sheets and justifications on this APA webpage.

Erasing the interface between psychiatry and general medicine?

It’s four years, now, since I first started reporting on the deliberations of the Somatic Symptom Disorders Work Group.

The Somatoform Disorders section of DSM-IV has been dismantled and four rarely used disorders replaced for DSM-5 by a single new diagnosis, ‘Somatic Symptom Disorder’ (SSD).

From May, everyone with chronic medical illness or long-term pain becomes a potential candidate for this new mental disorder label.

Out go DSM-IV’s rigorous criteria sets and the requirement for multiple symptoms to be medically unexplained; in comes a far looser definition that doesn’t distinguish between ‘medically unexplained’ somatic symptoms or symptoms in association with diagnosed medical disease.

You can read APA’s rationale for the change here and here and Task Force Chair, David J Kupfer, defending the SSD work group’s decisions here, on Huffington Post.

For DSM-5, the SSD criteria set focuses on the psychological impact of persistent, distressing bodily symptoms on the patient’s thoughts, feelings and behaviours and the degree to which their response is perceived to be ‘disproportionate’ or ‘excessive’ – irrespective of symptom etiology.

Patients with common diseases like cancer, angina, diabetes, CVD, or multiple sclerosis; with long-term pain; with chronic illnesses and conditions like irritable bowel syndrome, fibromyalgia, CFS, interstitial cystitis, chronic Lyme disease, or persistent, somatic symptoms of unclear etiology may qualify for an additional mental disorder diagnosis if the clinician considers the patient also meets the criteria for ‘Somatic Symptom Disorder’ and may benefit from treatment  – psychotropic drugs, CBT or other therapies to modify ‘faulty illness beliefs’ and ‘maladaptive’ coping strategies.

“[The SSD Work Group’s] framework will allow a diagnosis of somatic symptom disorder in addition to a general medical condition*, whether the latter is a well-recognized organic disease or a functional somatic syndrome such as irritable bowel syndrome or chronic fatigue syndrome” [1]

“These disorders typically present first in non-psychiatric settings and somatic symptom disorders can accompany diverse general medical as well as psychiatric diagnoses. Having somatic symptoms of unclear etiology is not in itself sufficient to make this diagnosis. Some patients, for instance with irritable bowel syndrome or fibromyalgia would not necessarily qualify for a somatic symptom disorder diagnosis. Conversely, having somatic symptoms of an established disorder (e.g. diabetes) does not exclude these diagnoses if the criteria are otherwise met.

“The symptoms may or may not be associated with a known medical condition. Symptoms may be specific (such as localized pain) or relatively non-specific (e.g. fatigue). The symptoms sometimes represent normal bodily sensations (e.g., orthostatic dizziness), or discomfort that does not generally signify serious disease.” [2]

*According to page 1 of APA document Highlights of Changes from DSM-IV-TR to DSM-5, under the heading “Terminology,” the document states: ‘The phrase “general medical condition” is replaced in DSM-5 with “another medical condition” where relevant across all disorders.’ Without better context for this change of terminology, it’s not clear what the implications might be or whether this might represent evidence of intent to blur the boundary between psychiatric and general medical conditions, or the colonization of general medicine. (If any readers are aware of earlier references to this change of terminology for DSM-5 and/or APA’s rationale, I should be pleased to receive information, as I can find no reference prior to January 21.)

Psychiatric creep

This new category will potentially result in a ‘bolt-on’ mental disorder diagnosis being applied to all chronic illnesses and medical conditions if the clinician decides the patient’s response to distressing bodily symptoms is ‘excessive’ or their coping strategies are ‘maladaptive,’ or that the patient is ‘catastrophising,’ or displaying ‘fear avoidance’ or is overly preoccupied with their symptoms (or in the case of a parent, a child’s symptoms).

If the practitioner feels the patient is spending too much time on the internet researching data, symptoms and treatments, or that their lives have become dominated by ‘illness worries,’ they may be vulnerable to dual-diagnosis with a mental disorder.

Patients with chronic, multiple bodily symptoms due to rare conditions or multi-system diseases like Behçet’s syndrome or Systemic lupus, which may take several years to diagnose, may be vulnerable to misdiagnosis with a mental disorder and premature case closure.

Families caring for children with chronic illness may be placed at risk of wrongful accusation of ‘over-involvement’ or of being ‘excessively concerned’ with a child’s symptoms or of colluding in the maintenance of ‘sick role behaviour.’

Just one distressing symptom for at least six months duration plus one of the three ‘B type’ criteria is all that is required to tick the box for a diagnosis of a mental health disorder – cancer + SSD; angina + SSD; asthma + SSD; COPD + SSD; diabetes + SSD; IBS + SSD; CFS + SSD…

15% of the ‘diagnosed illness’ study group (cancer and coronary disease) met the criteria for an additional diagnosis of SSD in the DSM-5 field trials.

In the ‘functional somatic’ study group (irritable bowel syndrome or chronic widespread pain), 26% were coded with SSD.

The criteria, as they stood at the third draft, caught 7% of the ‘healthy’ field trial control group.

The Somatic Symptom Disorder construct represents a significant change to the current DSM-IV-TR categories.

There is no substantial body of evidence to support the validity, reliability and safety of the application of SSD in adults or children nor any published data on projected prevalence rates across the entire disease spectrum or on the potential clinical and economic burdens for providers and payers – yet the SSD Work Group, Task Force and APA Board of Trustees have barrelled this through.

In February, SSD Work Group Chair, Joel E Dimsdale, MD, told journalist, Susan Donaldson James, for ABC News:

 “…If it doesn’t work, we’ll fix it in the DSM-5.1 or DSM-6.”

APA says there will be opportunities to reassess and revise DSM-5′s new disorders, post publication, and that it intends to start work on a DSM-5.1 release. Advocates and patient groups are not reassured by APA’s ‘publish first – patch later’ approach: is this science or Windows 7?

This section of DSM-5, seemingly overlooked by clinicians in the field, both within and outside psychiatry and psychosomatics, and by medico-legal and disability specialists demands scrutiny and investigation.

The SSD construct is now influencing emerging proposals and field testing for three severities of a new category for ICD-11, Bodily Distress Disorder, proposed to replace half a dozen existing ICD-10 Somatoform Disorders [3] [4].

As Dr James Brennan wrote in a recent BMJ Rapid Response:

“…All human distress occurs within the context of complicated factors (biological, psychological, emotional, interpersonal, social etc) and it is this context that demands our assessment and understanding, not reducing it all to a subjective judgment by a clinician as to whether a particular emotion is ‘excessive’ or ‘disproportionate’. How much distress ought a cancer patient to have? What democratic authority gives any of us the right to say what is excessive or proportionate about another person’s thoughts, emotions and behaviour? The SSD criteria in this regard are dangerously loose and over-inclusive.”

References

1 Dimsdale J, Creed F. DSM-V Workgroup on Somatic Symptom Disorders: the proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report. J Psychosom Res 2009;66:473-6.
2 DSM-5 Somatic Symptom Disorders Work Group Disorder Descriptions PDF document, published May 4, 2011 for the second stakeholder review.
3 Creed F, Gureje O. Emerging themes in the revision of the classification of somatoform disorders. Int Rev Psychiatry 2012;24:556-67.
4 Goldberg DP. Comparison between ICD and DSM diagnostic systems for mental disorders. In: Sorel E, ed. 21st century global mental health. Jones & Bartlett Learning, 2012:37-53.

 

Further reading

APA Somatic Symptom Disorder Fact Sheet

Somatic Chapter Drops Centrality Of Unexplained Medical Symptoms Psychiatric News, Mark Moran, March 1, 2013

Somatic Symptoms Criteria in DSM-5 Improve Diagnosis, Care David J Kupfer, MD, Chair, DSM-5 Task Force, defends the SSD construct, Huffington Post, February 8, 2013

The new somatic symptom disorder in DSM-5 risks mislabeling many people as mentally ill Allen Frances, MD, BMJ 2013;346:f1580 BMJ Press Release

Somatic Symptom Disorder could capture millions more under mental health diagnosis Suzy Chapman, May 26, 2012

Mislabeling Medical Illness As Mental Disorder Allen Frances, MD, Psychology Today, DSM 5 in Distress, December 8, 2012

Why Did DSM 5 Botch Somatic Symptom Disorder? Allen Frances, MD, Psychology Today, Saving Normal, February 6, 2013

New Psych Disorder Could Mislabel Sick as Mentally Ill Susan Donaldson James, ABC News, February 27, 2013

Dimsdale JE. Medically unexplained symptoms: a treacherous foundation for somatoform disorders? Psychiatr Clin North Am 2011;34:511-3. [PMID: 21889675]

Brief update on DSM-5 ‘Somatic Symptom Disorder’

Brief update on DSM-5 ‘Somatic Symptom Disorder’

Post #221 Shortlink: http://wp.me/pKrrB-2Dd

As previously reported, all draft proposals for categories and criteria for DSM-5 were frozen on the DSM-5 Development website on June 15, 2012, immediately following the closure of the third and final stakeholder review and comment period.

Changes made to the draft after June 15, 2012 are embargoed and final disorder descriptions and criteria sets won’t be evident until DSM-5 is released, in May, this year, unless APA elects to release selected information.

The manual texts that expand on the various disorder sections and the categories that sit within them have not been made public at any stage in the development process. It is understood that for the ‘Somatic Symptom Disorders’ group, for example, the manual text that accompanies these new categories and criteria sets will run to five or six pages.

On November 15, 2012, APA removed the entire third draft from the DSM-5 Development website.

According to this APA Permissions, Licensing & Reprints page, because the most recently posted draft [the third draft that was released on May 2, 2012] has undergone revisions and is no longer current, the criteria texts have been removed from the website in order to avoid confusion or use of outdated categories and definitions. [1]

The page also states that although APA Board of Trustees approved all the proposed diagnoses [in December, 2012] there continue to be minor editorial and content changes as APA moves towards the final stages of the publication process.

Although the DSM-5 Development Timeline has “Final Revisions by the APA Task Force; Final Approval by APA Board of Trustees; Submission to American Psychiatric Publishing, Inc” scheduled for December 2012, according to my sources, the manual texts were now expected to be finalized for the publishers by end of January.

 

DSM-5 Table of Contents

As also previously reported, APA has created new pages for information and resources for DSM-5, where a number of new articles and documents are available to download. [2][3]

http://www.psychiatry.org/dsm5

Documents include a DSM-5 Table of Contents which lists the disorder sections and the category terms that sit within them.

The DSM-5 Table of Contents reveals that changes to the overall section name for  the ‘Somatic Symptom Disorders’ categories and to the category names that sit within this section have been made since closure of the third and final draft.

For the overall disorder section name, DSM-5 will now be using

‘Somatic Symptom and Related Disorders’

rather than

‘Somatic Symptom Disorders’ as per the first, second and third drafts.

For the third draft, the 6 disorders proposed to sit under this disorder section were:

Somatic Symptom Disorders (SSD)

J 00 Somatic Symptom Disorder
J 01 Illness Anxiety Disorder
J 02 Conversion Disorder (Functional Neurological Symptom Disorder)
J 03 Psychological Factors Affecting Medical Condition
J 04 Factitious Disorder
J 05 Somatic Symptom Disorder Not Elsewhere Classified

7 categories are now listed (on Page 3) of the DSM-5 Table of Contents as follows:

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

Other than these revisions to the SSD disorder section name and category names, there are no other texts disclosed within the DSM-5 Table of Contents. So whatever text is included for the latter two categories, ‘Other Specified Somatic Symptom and Related Disorder’ and ‘Unspecified Somatic Symptom and Related Disorder,’ isn’t known.

Whether any revisions have been made to the disorder descriptions and criteria for the five other disorders since the third draft proposals were posted is also unknown because of the embargo on disclosure of changes to categories and criteria beyond June 15, last year.

 

SSD Work Group asked to reconsider

In December, Allen Frances, MD, who had chaired the Task Force that had oversight of the development of DSM-IV, asked the SSD Work Group, key APA Board of Trustees members and Task Force Chairs to reconsider the proposals for specifically the ‘Somatic Symptom Disorder’ category. [4]

These representations were made in response to Dr Frances’ own considerable concerns, and those of lay and professional stakeholders, for the looseness of the SSD definition and criteria set, as it had stood at the third draft, and the absence of a body of robust evidence for the validity and safety of ‘SSD’ as a construct, and data on likely prevalence rates.

Dr Frances also proffered suggestions for revisions that he considered would tighten up the criteria and reduce the potential for misapplication.

The response on behalf of the work group was that although Dr Frances’ suggestions were discussed, the work group would not be revising their recommendations. [5]

It is not known whether the concerns raised by Dr Frances in December were discussed beyond the SSD Work Group with the DSM-5 Task Force or with the APA Board of Trustees, who are responsible for approving proposals and therefore accountable for the content of the forthcoming manual.

 

ICD-11 and DSM-5

In a January 18 article for Psychiatric News, organ of the APA, Mark Moran reports:

“Kupfer [DSM-5 Task Force Chair] said the classification of disorders is largely harmonized with the World Health Organization’s International Classification of Diseases (ICD) so that the DSM criteria sets are more parallel with the proposed ICD-11. In DSM-5 both the current ICD-9-CM and the future standard ICD-10-CM codes (scheduled for 2014) are attached to the relevant disorders in the classification.” [6]

As reported in my Dx Revision Watch post of January 6, at the time of writing, current proposals in the ICD-11 Beta draft have ICD-10’s ‘Somatoform Disorders’ replaced with ‘Bodily Distress Disorders, and Psychological and behavioural factors associated with disorders or diseases classified elsewhere,’ with three, as yet undefined, Severities of ‘Bodily Distress Disorder.’ [7]

It remains to be clarified whether ICD-11’s Beta draft proposals for three Severities of ‘Bodily Distress Disorder’ to replace six ICD-10 ‘Somatoform Disorders’ proposes to mirror Per Fink’s definition and criteria for ‘Bodily Distress Syndrome’ or are more closely aligned with DSM-5‘s ‘Somatic Symptom Disorder,’ in keeping with the APA and WHO’s joint commitment to strive, where possible, for harmonization between the category names, glossary descriptions and criteria across the two systems. [8]

(I shall be addressing this issue in a future post.)

I have previously reported that for ICD-11-PHC, the abridged, Primary Health Care version of ICD-11, the proposal, last year, was for a disorder section called ‘Bodily distress disorders,’ under which would sit ‘Bodily stress [sic] syndrome.’ [9]

According to Professor, Sir David Goldberg, this category is proposed for ICD-11 Primary Health Care version to include “milder somatic symptom disorders” as well as “DSM-5′s Complex somatic symptom disorder” and would replace “medically unexplained somatic symptoms.” These proposals are subject to rejection or modification following ICD-11 Field Trials. [10]

DSM-5 is scheduled for release at the APA’s 166th Annual Meeting (San Francisco, May 18-22).

 

References and related reports

1] American Psychiatric Publishing Permissions, Licensing & Reprints

2] New DSM-5 webpages

3] DSM-5 Table of Contents

4] Mislabeling Medical Illness As Mental Disorder: The Eleventh DSM-5 Mistake, Psychology Today, DSM5 in Distress, Allen Frances, MD, December 8, 2012

5] Bad News: DSM 5 Refuses to Correct Somatic Symptom Disorder, Psychology Today, DSM5 in Distress, Allen Frances, MD, January 16, 2012

6] Continuity and Changes Mark New Text of DSM-5, Psychiatric News, Volume 48, Number 2, January 18, 2013: pp. 1-6 

7] ICD-11 Beta Draft Public Version: Bodily Distress Disorders
http://apps.who.int/classifications/icd11/browse/l-m/en#/http%3a%2f%2fwho.int%2ficd%23F45

8] Fink P, Schröder A. One single diagnosis, bodily distress syndrome, succeeded to capture ten diagnostic categories of functional somatic syndromes and somatoform disorders. J Psychosom Res 2010;68:415-26
http://www.ncbi.nlm.nih.gov/pubmed/20403500

9] Lam TP, Goldberg DP, Dowell AC, Fortes S, Mbatia JK, Minhas FA, Klinkman MS. Proposed new diagnoses of anxious depression and bodily stress syndrome in ICD-11-PHC: an international focus group study. Fam Pract 2012
http://www.ncbi.nlm.nih.gov/pubmed/22843638

10] Goldberg DP. Comparison Between ICD and DSM Diagnostic Systems for Mental Disorders. In: Sorel E, (Ed.) 21st Century Global Mental Health. Jones & Bartlett Learning, 2012: 37-53 [Free PDF Sample Chapter 2]

11] Somatic Symptom Disorder could capture millions more under mental health diagnosis, Suzy Chapman for Dx Revision Watch, May 26, 2012

Update on ICD-11 Beta draft: Bodily Distress Disorder

Updates on ICD-11 Beta draft: Bodily Distress Disorder (proposed for ICD-11 Chapter 5: Mental and behavioural disorders); Chronic fatigue syndrome; Postviral fatigue syndrome; Benign myalgic encephalomyelitis (Chapter 6: Diseases of the nervous system)

Post #218 Shortlink: http://wp.me/pKrrB-2Bg

Dr Elena Garralda presentation slides:

http://www.rcpsych.ac.uk/pdf/Garralda%20E.pdf

or open here: Click link for PDF document    Garralda presentation Somatization in Childhood

Slide 1

Somatization in childhood

The child psychiatrist’s concern?

Elena Garralda

CAP Faculty Meeting, RCPsych Manchester, September 2012

Slide 11

New ICD-11 and DSM-V classifications

. Somatoform disorders >>>
– Bodily distress syndrome (ICD-11)
– Complex Somatic symptom disorder (DSM-V)

[Preceded by downward pointing arrow]

“Unexplained” or “functional” medical symptoms (CFS, fibromyalgia, irritable bowel syndrome)

[Preceded by upward pointing arrow]

Physical complaint (s)
with subjective distress/preoccupation ++,
illness beliefs impairment
health help seeking

+++

Notes on ICD-11 Beta drafting platform and DSM-5 draft by Suzy Chapman for Dx Revision Watch:

These notes may be reposted, if reposted in full, source credited, link provided, and date of publication included.

January 6, 2013

1] The publicly viewable version of the ICD-11 Beta drafting platform can be accessed here:
Foundation view: http://apps.who.int/classifications/icd11/browse/f/en
Linearization view: http://apps.who.int/classifications/icd11/browse/l-m/en

2] The various ICD-11 Revision Topic Advisory Groups are developing the Beta draft on a separate, more complex platform accessible only to ICD-11 Revision.

3] The ICD-11 Beta draft is a work in progress and not scheduled for completion until 2015/16. When viewing the public version of the Beta draft please note the ICD-11 Revision Caveats. Note also that not all proposals may be retained following analysis of the field trials for ICD-11 and ICD-11-PCH, the abridged Primary Care version of ICD-11:
http://apps.who.int/classifications/icd11/browse/Help/Get/caveat/en

4] The Bodily Distress Disorders section of the ICD-11 Beta draft Chapter 5 can be found here:
http://apps.who.int/classifications/icd11/browse/f/en#/http%3a%2f%2fwho.int%2ficd%23F45
http://apps.who.int/classifications/icd11/browse/l-m/en#/http%3a%2f%2fwho.int%2ficd%23F45

According to the public version of the ICD-11 Beta drafting platform, the existing ICD-10 Somatoform Disorders are currently proposed to be replaced with Bodily Distress Disorders, and Psychological and behavioural factors associated with disorders or diseases classified elsewhere, not with Bodily distress syndrome as Dr Garralda has in her slide presentation.

The following proposed ICD-11 categories are listed as child categories under parent, Bodily Distress Disorders, and Psychological and behavioural factors associated with disorders or diseases classified elsewhere:

EC5 Mild bodily distress disorder
EC6 Moderate bodily distress disorder
EC7 Severe bodily distress disorder
EC8 Psychological and behavioural factors associated with disorders or diseases classified elsewhere

There are no Definitions nor any other descriptors populated for the proposed, new ICD categories EC5 thru EC7.

EC8 is a legacy category from ICD-10 and has some populated content imported from ICD-10.

+++
These earlier ICD-11 Beta draft Somatoform Disorders categories appear proposed to be eliminated and replaced with the four new categories EC5 thru EC8, listed above:

Somatization disorder [F45.0 in ICD-10]
Undifferentiated somatoform disorder [F45.1 in ICD-10]
Somatoform autonomic dysfunction [F45.3 in ICD-10]
Persistent somatoform pain disorder [F45.4 in ICD-10]
    > Persistent somatoform pain disorder
    > Chronic pain disorder with somatic and psychological factors [Not in ICD-10]
Other somatoform disorders [F45.8 in ICD-10]
Somatoform disorder, unspecified [F45.9 in ICD-10]

5] The existing ICD-10 Chapter V category Neurasthenia [ICD-10: F48.0] is no longer accounted for in the public version of the ICD-11 Beta draft. I have previously reported that for ICD-11-PHC, the Primary Care version of ICD-11, the proposal is to eliminate the term Neurasthenia.

(I cannot confirm whether the currently omission of Neurasthenia from the Beta draft is due to oversight or because ICD-11 Revision’s intention is that Neurasthenia is also eliminated from the main ICD-11 classification.)

+++
6] I have previously reported that for ICD-11-PHC, the abridged, Primary Care version of ICD-11, the proposal, last year, was for a disorder section called Bodily distress disorders, under which would sit Bodily stress syndrome [sic].

This category is proposed for ICD-11 Primary Care version to include “milder somatic symptom disorders” as well as “DSM-5’s Complex somatic symptom disorder” and would replace “medically unexplained somatic symptoms.”

7] Dr Garralda lists Complex Somatic symptom disorder (DSM-V) on Slide 11 of her presentation.

The manual texts for the next edition of DSM are in the process of being finalized for a projected release date of May 2013. The next edition of DSM will be published under the title DSM-5 not DSM-V . The intention is that once published, updates and revisions to DSM-5 will be styled: DSM-5.1, DSM-5.2 etc.

When the third draft of DSM-5 was released in May 2012, the proposal was to merge Complex Somatic Symptom Disorder with Simple Somatic Symptom Disorder and to call this hybrid category Somatic Symptom Disorder.

This would mean that this new disorder has the same name as the overall disorder section it sits under, which replaces DSM-IV’s Somatoform Disorders.

As any subsequent changes to draft criteria sets following closure of the third stakeholder review are embargoed, I cannot confirm whether the SSD Work Group has decided to rename this category to Somatic symptom Disorder or retain the original term, Complex Somatic Symptom Disorder, the term used by Dr Garralda in her presentation.

+++
8] Turning from ICD-11 Beta draft Chapter 5 Mental and behavioural disorders to Chapter 6 Diseases of the nervous system:

As previously reported, Chronic fatigue syndrome is listed under Diseases of the nervous system in the Foundation View. There is no listing for Chronic fatigue syndrome in the Linearization View nor is the term listed in the PDF for Chapter 6, that is available to those who are registered with ICD-11 Beta draft for access to additional content:

http://apps.who.int/classifications/icd11/browse/f/en#http%3a%2f%2fwho.int%2ficd%23G93.3

Documentation from the ICD-11 iCAT Alpha draft dating from May 2010, implies that the intention for ICD-11 is a change of hierarchy for the existing ICD-10 Title term Postviral fatigue syndrome.

In the ICD-11 Beta draft, Chronic fatigue syndrome (which was listed only within the Index volume of ICD-10 and not listed in Volume 2: The Tabular List) appears to be elevated to ICD Title term status, with potentially up to 12 descriptive parameters yet to be completed and populated in accordance with the ICD-11 “Content Model”.

But the current proposed hierarchical relationship between PVFS and CFS for ICD-11 remains unconfirmed.

See image for documentation from the iCAT Alpha drafting platform, from May 2010:

https://dxrevisionwatch.com/wp-content/uploads/2010/06/change-history-gj92-cfs.png

There is no discrete ICD Title term displaying for Postviral fatigue syndrome in either the ICD-11 Beta Foundation View or Linearization View.

Neither is there any discrete ICD Title term displaying for Benign myalgic encephalomyelitis in either the Foundation View or Linearization View.

Benign myalgic encephalomyelitis appears at the top of a list of terms under “Synonyms” in the CFS description. [The hover text over the asterisk at the end of “Benign myalgic encephalomyelitis” reads, “This term is an inclusion term in the linearizations.”]

Postviral fatigue syndrome is also listed under “Synonyms” along with a number of other terms imported from other classification systems.

Included in this list under “Synonyms” are “chronic fatigue syndrome nos” and “chronic fatigue, unspecified,” both of which appear to have been sourced from the as yet to be implemented, US specific, ICD-10-CM.

+++
At some recent, unspecified date, a Definition has been inserted for ICD-11 Title term Chronic fatigue syndrome into the previously empty Definition field. An earlier Definition was removed when the Alpha draft was replaced with the Beta draft but can be seen in this screenshot, here, from June 2010:

https://dxrevisionwatch.com/wp-content/uploads/2010/05/2icatgj92cfsdef.png

The current Definition reads (and be mindful of the ICD-11 Caveats):

“Chronic fatigue syndrome is characterized by extreme chronic fatigue of an indeterminate cause, which is disabling andt [sic] does not improve with rest and that is exacerbated by physical or mental activity.”

There are no Definition fields for Benign myalgic encephalomyelitis or Postviral fatigue syndrome as these terms are listed under “Synonyms” to ICD-11 Title term, Chronic fatigue syndrome.

+++
Since one needs to be mindful of the ICD-11 Caveats and as the Chair of Topic Advisory Group for Neurology has failed to respond to a request for clarification of the intention for these three terms and the proposed ICD relationships between them, I am not prepared to draw any conclusions from what can currently be seen in the Beta drafting platform.

I shall continue to monitor the Beta draft and report on any significant changes.

For definitions of “Synonyms,” “Inclusions,” “Exclusions” and other ICD-11 terminology see the iCAT Glossary:
http://apps.who.int/classifications/apps/icd/icatfiles/iCAT_Glossary.html

+++
Related material:

http://www.rcpsych.ac.uk/pdf/8%20Ash%20IC2012.pdf

Presentation slides: Medically Unexplained Symptoms pages

Dr Graham Ash, Lancashire Care NHS Foundation Trust

Website pages featured in the slide presentation:

Medically Unexplained Symptoms

http://www.rcpsych.ac.uk/expertadvice/improvingphysicalandmh/aboutthissite.aspx

Dx Revision Watch Post, June 26, 2012: ICD-11 Beta drafting platform: Update (2): Neurasthenia, Postviral fatigue syndrome (PVFS), Benign myalgic encephalomyelitis (ME), Chronic fatigue syndrome (CFS), Fibromyalgia (FM), Irritable bowel syndrome (IBS): http://wp.me/pKrrB-2mC

Proposed new diagnoses of anxious depression and bodily stress syndrome in ICD-11-PHC: an international focus group study

Proposed new diagnoses of anxious depression and bodily stress syndrome in ICD-11-PHC: an international focus group study. [JOURNAL ARTICLE]

Post #196 Shortlink: http://wp.me/pKrrB-2pp

This paper, published on July 28, discusses field testing of two proposed new categories for the forthcoming ICD-11 PHC, “anxious depression” and “bodily stress syndrome (BSS)”.

“Bodily stress syndrome (BSS)” is currently proposed to replace ICD-10 PHC’s “F45 Unexplained somatic complaints” which is the equivalent to ICD-10’s “F45 Somatoform Disorders” section.

For ICD-11 PHC, it is proposed not to include the discrete category “Neurasthenia.”

+++
Full text, subscription required:

Family Practice (2012) doi: 10.1093/fampra/cms037

First published online: July 28, 2012

http://fampra.oxfordjournals.org/content/early/2012/07/20/fampra.cms037.long

http://fampra.oxfordjournals.org/content/early/2012/07/20/fampra.cms037.full.pdf+html

Abstract

http://www.ncbi.nlm.nih.gov/pubmed/22843638

Lam TP, Goldberg DP, Dowell AC, Fortes S, Mbatia JK, Minhas FA, Klinkman MS

Proposed new diagnoses of anxious depression and bodily stress syndrome in ICD-11-PHC: an international focus group study. [JOURNAL ARTICLE]

Fam Pract 2012 Jul 28.

BACKGROUND: The World Health Organization is revising the primary care classification of mental and behavioural disorders for the International Classification of Diseases (ICD-11-Primary Health Care (PHC)) aiming to reduce the disease burden associated with mental disorders among member countries.

OBJECTIVE: To explore the opinions of primary care professionals on proposed new diagnostic entities in draft ICD-11-PHC, namely anxious depression and bodily stress syndrome (BSS).

METHODS: Qualitative study with focus groups of primary health-care workers, using standard interview schedule after draft ICD-11-PHC criteria for each proposed entity was introduced to the participants.

RESULTS: Nine focus groups with 4-15 participants each were held at seven locations: Austria, Brazil, Hong Kong, New Zealand, Pakistan, Tanzania and United Kingdom. There was overwhelming support for the inclusion of anxious depression, which was considered to be very common in primary care settings. However, there were concerns about the 2-week duration of symptoms being too short to make a reliable diagnosis. BSS was considered to be a better term than medically unexplained symptoms but there were disagreements about the diagnostic criteria in the number of symptoms required.

CONCLUSION: Anxious depression is well received by primary care professionals, but BSS requires further modification. International field trials will be held to further test these new diagnoses in draft ICD-11-PHC.

+++

Notes and related posts:

ICD-10 PHC (sometimes written as ICD-10-PHC or ICD10-PHC or ICD-10 PC), is a simplified version of the WHO’s ICD-10 chapter for mental and behavioural disorders for use in general practice and primary health care settings. This system has rough but not exact equivalence to selected of the mental disorders in the core ICD-10 classification.

The ICD-10 PHC includes and describes 26 disorders commonly managed within primary care as opposed to circa 450 classified within Chapter V of ICD-10.

Click here for a chart showing the grouping of categories adapted from the full ICD-10 version for the existing ICD-10 PHC mental health categories

Professor, Sir David Goldberg, M.D., Emeritus Professor, Institute of Psychiatry, King’s College, London, is a member of the DSM-5 Mood Disorders Work Group. Prof Goldberg also chairs the Consultation Group for Classification in Primary Care that is making recommendations for the mental and behavioural disorders for ICD-11 PHC.

Other members of the ICD-11 PHC Consultation Group include Michael Klinkman (GP, United States; Vice Chairman); Sally Chan (nurse, Singapore), Tony Dowell (GP, New Zealand) Sandra Fortes (psychiatrist, Brazil), Linda Gask (psychiatrist, UK), KS Jacob (psychiatrist, India), Tai-Pong Lam (GP, Hong Kong), Joseph Mbatia (psychiatrist, Tanzania), Fareed Minhas (psychiatrist, Pakistan), Marianne Rosendal (GP, Denmark), assisted by WHO Secretariat Geoffrey Reed and Shekhar Saxena.

The majority of patients with mental health problems are diagnosed and managed by general practitioners in primary care – not by psychiatrists and mental health specialists. ICD-10 PHC is used in developed and developing countries in general medical settings and also used in the training of medical officers, nurses and multi purpose health workers.

See also Page 3 of this report:

Changes to ICD-11 Beta drafting platform: Bodily Distress Disorders (1)

Page 3, including Update at July 9: Second list of proposals for ICD-11 PHC

Further information on ICD-10 PHC and proposals for the 28 mental health disorders proposed to be included in ICD-11 PHC can be found in these two documents:

1] Goldberg, D. Guest editorial. A revised mental health classification for use in general medical settings: the ICD11–PHC 1. International Psychiatry, Page 1, February 2011.

http://www.rcpsych.ac.uk/pdf/IPv8n1.pdf

Note: The list of proposed categories in the editorial above has been superseded by the list in Chapter 2 of this book, below. (Source: Prof D Goldberg, who stresses these are draft proposals and subject to revision in the light of field trial results).

2] 21st Century Global Mental Health by Dr Eliot Sorel, Professor, George Washington University, Washington D.C.

Publication date: August, 2012: http://www.jblearning.com/catalog/9781449627874/

Page 51, Sample Chapter 2: http://samples.jbpub.com/9781449627874/Chapter2.pdf