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 Disorder’ in Current Biology, 22 April, 2013

‘Somatic Symptom Disorder’ in Current Biology

Post #238 Shortlink: http://wp.me/pKrrB-2NG

The April 22 edition of Current Biology publishes a feature article on DSM-5 by science writer, Michael Gross, Ph.D.

The article includes quotes from Suzy Chapman and Allen Frances on the implications for diverse patient groups for the introduction of the new Somatic Symptom Disorder into the next edition of the DSM, scheduled for release in May.

The article also mentions the influence of Somatic Symptom Disorder on proposals for a new ICD category – Bodily Distress Disorder – being field tested for ICD-11 and ICD-11-PHC [1].

…Chapman and Frances are concerned that the new definition of SSD will also be reflected in ICD-11. ICD-11 is field testing a new category Bodily Distress Disorder proposed to replace six or seven existing ICD-10 somatoform disorders, which, according to working group reports on emerging proposals, mirrors the DSM-5 somatic symptom disorder definition, says Chapman.

The article can be read in full at:

Current Biology 22 April, 2013 Volume 23, Issue 8

Copyright 2013 All rights reserved. Current Biology, Volume  23, Issue  8, R295-R298, 22 April 2013
doi:10.1016/j.cub.2013.04.009

Feature

Has the manual gone mental?

Michael Gross

Full text: http://www.cell.com/current-biology/fulltext/S0960-9822(13)00417-X

PDF: http://download.cell.com/current-biology/pdf/PIIS096098221300417X.pdf

1 ICD-11 Beta drafting platform: Chapter 5: Bodily Distress Disorder: Mild; Moderate; Severe

Three BMJ letters published in response to Somatic Symptom Disorder commentary

Three letters are published this week in response to Allen Frances’ BMJ commentary on ‘Somatic Symptom Disorder’

Post #237 Shortlink: http://wp.me/pKrrB-2No

On March 19, BMJ published a commentary by Allen Frances, MD, with contribution from Suzy Chapman, in both the print and online editions, strongly opposing the inclusion of ‘Somatic Symptom Disorder’ in the forthcoming DSM-5:

PERSONAL VIEW
The new somatic symptom disorder in DSM-5 risks mislabeling many people as mentally ill
This new condition suggested in the bible of mental health diagnoses lacks specificity, says Allen Frances

The opinion piece was also featured as US Editor’s Choice:

DSM-5 and the rough ride from approval to publication
Edward Davies, US news and features editor, BMJ

BMJ press released the commentary which was picked up by a number of international media sites including UK Times and Deborah Brauser for Medscape Medical News. To date, 31 Rapid Responses have been received.

Three letters (all US respondents) are printed in this week’s BMJ print edition (20 April 2013 Vol 346, Issue 7904). The letters are behind a paywall so I am giving links to the original BMJ Rapid Responses, with the caveat that responses may have been edited for the print edition:

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LETTERS
New somatic symptom disorder in DSM-5

Helping to find the most accurate diagnosis

BMJ 2013; 346 doi: http://dx.doi.org/10.1136/bmj.f2228 (Published 16 April 2013) BMJ 2013;346:f2228
Joel E Dimsdale, professor of psychiatry emeritus, Michael Sharpe, professor of psychiatry, Francis Creed, professor of psychiatry, DSM-5 Somatic Symptom Disorders work group  BMJ Rapid Response 20 March 2013

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Guilty of diagnostic expansion

BMJ 2013; 346 doi: http://dx.doi.org/10.1136/bmj.f2254 (Published 16 April 2013) BMJ 2013;346:f2254
James Phillips, psychiatrist, USA  BMJ Rapid Response 25 March 2013

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A step in the wrong direction

BMJ 2013; 346 doi: http://dx.doi.org/10.1136/bmj.f2233 (Published 16 April 2013) BMJ 2013;346:f2233
Steven A King, chair, DSM-IV and DSM-IV-TR pain disorders committees; Pain Management and Psychiatry, New York  BMJ Rapid Response 28 March 2013

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Further reading:

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]

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American Psychiatric Association justifications for SSD:

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

‘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]

Rapid Responses to BMJ DSM-5 ‘Somatic Symptom Disorder’ opposition piece

Rapid Responses to Allen Frances’ BMJ opposition piece on DSM-5‘s ‘Somatic Symptom Disorder’

Post #230 Shortlink: http://wp.me/pKrrB-2HN

Update March 28: Currently 27 BMJ Rapid Responses have been published. BMJ has also launched a Poll asking readers to vote on: “Will the new DSM-5 lead to patients being mislabelled as mentally ill?” Vote on this page

Update March 26: a tautology that serves no useful purpose… 1 Boring Old man on SSD

On March 20, BMJ published a commentary on the DSM-5 ‘Somatic Symptom Disorder’ by Allen Frances, MD, with contribution from Dx Revision Watch, strongly opposing the inclusion of this new, poorly tested disorder in the forthcoming DSM-5, scheduled for publication on May 22.

Dr Frances is professor emeritus, Duke, and had chaired of the Task Force for DSM-IV.

Article here:

PERSONAL VIEW

The new somatic symptom disorder in DSM-5 risks mislabeling many people as mentally ill

This new condition suggested in the bible of mental health diagnoses lacks specificity, says Allen Frances

The opinion piece is also featured in this week’s “Editor’s Choice”:

Editor’s Choice
US Editor’s Choice

DSM-5 and the rough ride from approval to publication

Edward Davies, US news and features editor, BMJ

Rapid Responses to the BMJ article can be read here:

http://www.bmj.com/content/346/bmj.f1580?tab=responses

24 Rapid Responses have been published. I am publishing both my submissions, below:

Suzy Chapman
Patient advocate

27 March 2013

What evidence for safety of application of SSD in children?

Extracts from Somatic Symptom Disorders Work Group ‘Disorders Description’ document, published May 2011, for the second DSM-5 stakeholder review [1]:

“The presentation of these symptoms may vary across the lifespan. A corroborative historian with a life course perspective may provide important information for both the elderly and for children.”

“PFAMC [Psychological Factors Affecting Medical Condition]* can occur across the lifespan. Particularly with young children, corroborative history from parents or school can assist the diagnostic evaluation.”

“In the elderly somatic symptoms and comorbid medical illnesses are more common, and thus a focus on criteria B becomes more important. In the young child, the ‘B criteria’ may be principally expressed by the parent.”

It appears, then, that the ‘B type’ Somatic Symptom Disorder (SSD) criteria are intended for application where the parent(s) of a child with chronic somatic symptoms are perceived to be expressing ‘excessive thoughts, feelings, and behaviors,’ or ‘disproportionate and persistent concerns,’ or ‘maladaptive’ coping strategies; or considered to be devoting ‘excessive time and energy’ to [a child’s] symptoms or health concerns or demonstrating ‘dysfunctional and maladaptive beliefs’ about symptoms or disease.

There is no evidence that SSD or PFAMC have been field tested by APA or by any other group for safety and reliability of application in children and young people.

If the finalized criteria sets and texts for this section allow for the application of a diagnosis of Somatic Symptom Disorder where a parent is considered to be excessively concerned with a child’s symptoms, families caring for children with any chronic disease or condition may be placed at risk of wrongful accusation of ‘over-involvement’ with a child’s symptomatology.

Where a parent is perceived as enabling ‘maintenance of sick role behaviour’ in a child or young person this can provoke a devastating cascade of intervention: placement or threat of placement on the ‘at risk register’; social services and child protection investigation; in some cases, court intervention for removal of a sick child out of the home environment and into foster care or for enforced in-patient rehabilitation against the wishes of the family.

This is already happening in the UK, USA and currently in Denmark, in families with a child or young person with chronic illness or disability, notably with Chronic Fatigue Syndrome or ME. It may happen more frequently in families where a diagnosis of chronic childhood illness + SSD has been applied.

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 urgent scrutiny and investigation.

*Note: In DSM-IV-TR, PFAMC is located in the Appendix under ‘Other Conditions That May Be a Focus of Clinical Attention.’ For DSM-5, PFAMC is being relocated to the mental disorders classifications and coded under the new section ‘Somatic Symptoms and Related Disorders’ that replaces DSM-IV-TR’s ‘Somatoform Disorders.’

References:

1 Somatic Symptom Disorders Work Group ‘Disorders Description’ document, second stakeholder review, May 2011
Competing interests: I reviewed and provided comment and suggestions for this BMJ commentary by Allen Frances, MD. I run a website that archives and reports on DSM-5 and ICD-11 activities.

+++
Suzy Chapman
Patient advocate

26 March 2013

Dichotomy

I am puzzled by the disconnect between the cautiousness expressed within this 2011 article by Dr Dimsdale [1] and his work group’s barrelling through with a new construct, which James Phillips notes [2] lacks a high level of empirical support.

Dr Dimsdale is evidently aware of the perils of over diagnosing mental illness and identifies inter alia that a number of factors influence the accuracy of diagnoses: that one must consider how thorough was the physician’s evaluation; how adequate the physician’s knowledge base in synthesizing the information obtained from the history and physical examination; that time pressures in primary care make it difficult to comprehensively evaluate patients and thus contribute to delays and slips in diagnosis; that physicians can wear blinders or have tunnel vision in evaluating patients – that just because a patient has previously had MUS [Medically Unexplained Symptoms] that there is no guarantee that the patient has yet another MUS; that diagnoses are shaped by the state of medical knowledge at the time when the patient is evaluated; that new diseases are constantly arising; that aetiologies are eventually established for diseases that have previously not been well understood.

Yet the group is proposing to operationalize an entirely new disorder of its own devising, using highly subjective criteria for which no significant body of research into reliability, validity and safety has been published, that will capture adults, children, adolescents and elderly people with diverse illnesses.

Whilst it was welcomed that for the third iteration, the chronicity criteria of “greater than one month” was removed with the merging of SSSD [Simple Somatic Symptom Disorder] with CSSD  [Complex Somatic Symptom Disorder], it is of considerable concern that in order to accommodate SSSD within the CSSD criteria, the “B type” threshold has been reduced from “at least two” to “at least one,” thereby potentially increasing prevalence.

It is also of considerable concern that no data on prevalence estimates were available for the second and third draft review and no data on impact of different thresholds for the “B type” criteria.

In light of the field trial findings, it is also of concern that the SSD work group has yet to publish any projections for prevalence estimates and the potential increase in mental health diagnoses across the entire disease landscape, nor on the projected clinical and economic burden of providing CBT and similar therapies for patients for whom an additional diagnosis of Somatic Symptom Disorder is assigned.

Given the majority of mental health disorders are diagnosed and treated within primary care and non-psychiatric settings, it is remarkable that the Task Force failed to recruit any general practitioners or clinicians outside the field of psychiatry and psychosomatics to serve on this work group, nor a medico-legal specialist.

In a counterpoint response to Allen Frances’ May 2012 New York Times Op-Ed piece, the American Psychiatric Association (APA) stated:

“…There are actually relatively few substantial changes to draft disorder criteria. Those that have been recommended are based on the scientific and clinical evidence amassed over the past 20 years and then are subject to multiple review processes within the APA.”

The Somatic Symptom and Related Disorders chapter is one section for which substantial changes to existing definitions and criteria are being introduced but with no body of rigorous evidence to support the SSD construct – a construct already influencing proposals for a new ICD classification, “Bodily Distress Disorder” for the World Health Organization’s ICD-11 and ICD-11-PHC (primary care) version, to replace several of ICD-10’s existing Somatoform Disorder categories.

During the second public review of draft criteria for DSM-5, the ‘Somatic Symptom Disorder’ section received more submissions from advocacy organizations, patients, and professionals than almost any other disorder category. But rather than tighten up the criteria or subject the entire disorder section to independent scientific review, the SSD Work Group’s response was to lower the threshold even further – potentially pulling even more patients under a mental disorder label.

In February, Dr Dimsdale 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.” [3]

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. Patient groups, advocates and professionals are not reassured by APA’s ‘publish first – patch later’ approach to science.

Dr Dimsdale has described his group’s revision as “a step in the right direction.” But DSM-5 appears hell bent on stumbling blindly from the “treacherous foundation” of ‘medically unexplained’ into the quicksands of loose, unvalidated constructs.

The appropriate response would be for APA to pull this disorder out of the main diagnostic section, now, before its new manual rolls off the presses and relocate under the “V codes.”

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

2 BMJ Rapid Response: http://www.bmj.com/content/346/bmj.f1580/rr/637773

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

Competing interests: I reviewed and provided comment and suggestions for this BMJ commentary by Allen Frances, MD. I run a website that archives and reports on DSM-5 and ICD-11 activities.

Related content

The President’s Message in the Spring edition of The National Forum, newsletter of the National CFIDS Foundation Inc. (Vol. 18, No. 4 Spring 2013) is devoted to the DSM-5 SSD issue and can also be read here on their website.

Allen Frances, MD, blogs at DSM 5 in Distress, and Saving Normal at Psychology Today.

Mislabeling Medical Illness As Mental Disorder December 8, 2012

Bad News DSM-5 Refuses To Correct Somatic Symptom Disorder January 16, 2013

For additional commentary on ‘Somatic Symptom Disorder’:

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