Category Archives: MUS

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

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Report edited from an account provided by the ME Association, Denmark, with permission of the Hansen family.

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How can I get out of here? I can’t take this.

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 bed.

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

The psychiatrists at this clinic have no experience with severely ill ME patients and the Hansen family and the ME Association of Denmark fear that Karina is being treated incorrectly which will 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 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 the ME Association of Denmark met with parliament member, Liselott Blixt, who agreed to help to get answers to the many questions in this case.

The ME Association of Denmark 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.

Note: Suzy Chapman, owner of Dx Revision Watch, has no connection with any petitions or any other initiatives in response to the Hansen family’s situation. All enquiries in relation to petitions or other initiatives should be addressed directly to the organisers.

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What can you do?

The ME Association of Denmark initiative

The ME Association of Denmark hopes that pressure from many sources might encourage the authorities to release these documents and that you may be able to help by writing to the Danish Ministry of Health, Holstebro County or Region Midtjylland or to the Danish embassy in your country, and letting them know you are aware of Karina’s case. The ME Association of Denmark suggests that you ask for documentation that the treatment Karina is receiving is the correct treatment for severely ill ME patients. Communications should be polite and professional.

Danish State authorities:

Danish Health and Medicines Authority (Sundhedsstyrelsen):
Axel Heides Gade 1
2300 Copenhagen S
Denmark
Email: sst@sst.dk
Telephone: +45 7222 7400 Monday to Friday, 9:30 – 15:00.

Danish regional Office:
Statsforvalningsen Midtjylland
St. Blichers Vej 6
Postbox: 151
6950 Ringkobing
midtjylland@statsforvaltning.dk
Tele: +45 7256 8300

County Office:
Holstebro County – Mayor’s Office
Rådhuset
Kirkestræde 11
7500 Holstebro
Tlf. 9611 7500
kommunen@holstebro.dk

If you receive any answers to your communication, please send them the ME Association of Denmark at icerebel62@hotmail.com.

What else can you do?

There is a May 12th (ME Awareness Week) campaign, here, for sending postcards 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 and the campaign the ME Association of Denmark is running go here on Facebook

If you have a blog or a website, please link to this post or contact the ME Association of Denmark for a copy of the account and write your own blog post. Post a link to this post (or to any of several other blogs about Karina) 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

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/

The clinic is working hard to get their new diagnosis, Bodily Distress Syndrome, into the next version of the WHO’s ICD codes, ICD-11, under Mental and behavioural disorders. See: ICD-11 Beta drafting platform: Chapter 5: Bodily Distress Disorder: Mild; Moderate; Severe

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. The ME Association 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.

The ME Association 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 the ME Association, Denmark, 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

DSM-5 Round up: April #1

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DSM-5 Round up: April #1

Post #231 Shortlink: http://wp.me/pKrrB-2In

New York Post

A disease called ‘childhood’

Do 1 in 5 NYC preteens really suffer a mental woe? A psychiatry expert argues we’re overdiagnosing —and overmedicating — our kids

Allen Frances MD | March 30, 2013

Last week, The Post reported that more than 145,000 city children struggle with mental illness or other emotional problems. That estimate, courtesy of New York’s Health Department, equals an amazing 1 in 5 kids. Could that possibly be true?

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BBC Radio 4

http://www.bbc.co.uk/programmes/b01rl1q8

Medicalising Grief

Will the book that classifies mental illness lead to the medicalisation of grief?

Presented by Matthew Hill. Featuring Drs Jerome Wakefield, Lisa Cosgrove, Allen Frances (Chaired the Task Force for DSM-IV), Joanne Cacciatore and Gary Greenberg.

Available to listen again for the next 7 days online.

Counseling Today ACA podcasts help counselors prepare for DSM-5

Heather Rudow | March 27, 2013

Rebecca Daniel-Burke, ACA’s [American Counseling Association]director of professional projects and staff liaison to ACA’s DSM-5 Task Force, hosts the podcast series, which offers counselors a way to prepare for and understand potential changes. Daniel-Burke spoke with K. Dayle Jones for the first, 38-minute podcast, and Jason King for the second, which is 52 minutes long and available for CE credit…

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The New York Times invited readers to respond for a dialogue about psychiatric diagnoses and the forthcoming DSM-5. The dialogue was initiated by a letter from Ronald Pies, which concludes “‘Diagnosis’ means knowing the difference between one condition and another. For many patients, learning the name of their disorder may relieve years of anxious uncertainty. So long as diagnosis is carried out carefully and respectfully, it may be eminently humanizing. Indeed, diagnosis remains the gateway to psychiatry’s pre-eminent goal of relieving the patient’s suffering.”

http://www.nytimes.com/2013/03/20/opinion/invitation-to-a-dialogue-psychiatric-diagnoses.html

Ronald Pies

Controversy surrounding the soon-to-be-released fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, or DSM-5 — often called “psychiatry’s bible” — has cast a harsh light on psychiatric diagnosis. For psychiatry’s more radical critics, psychiatric diagnoses are merely “myths” or “socially constructed labels.” But even many who accept the reality of, say, major depression argue that current psychiatric diagnoses often “stigmatize” or “dehumanize” people struggling with ordinary grief, stress or anxiety…

Published responses:

http://www.nytimes.com/2013/03/24/opinion/sunday/sunday-dialogue-defining-mental-illness.html

Letters
Sunday Dialogue: Defining Mental Illness

Response to Letters from Ronald Pies via Psychiatric Times

http://www.psychiatrictimes.com/blog/pies/content/article/10168/2135248

Diagnosis and its Discontents: The DSM Debate Continues

Ronald W. Pies, MD | 29 March 2013

Dr Pies is Editor-in-Chief Emeritus of Psychiatric Times, and a professor in the psychiatry departments of SUNY Upstate Medical University and Tufts University School of Medicine. He is the author of The Judaic Foundations of Cognitive Behavioral Therapy; a collection of short stories, Ziprin’s Ghost; and, most recently, a poetry chapbook, The Heart Broken Open. His most recent book is The Three-Petalled Rose: How the Synthesis of Judaism, Buddhism, and Stoicism Can Create a Healthy, Fulfilled and Flourishing Life (iUniverse: 2013).

“As to diseases, make a habit of two things—to help, or at least to do no harm.”
–Hippocrates, Epidemics, in Hippocrates, trans. W. H. S. Jones (1923), Vol. I, 165 [italics added]

“An agnostic is someone who doesn’t know, and di- is a Greek prefix meaning “two.” So “diagnostic” means someone who doesn’t know twice as much as an agnostic doesn’t know.”
–Walt Kelly, Pogo

A funny thing happened to me on the way to the New York Times “Sunday Dialogue” —I made myself unclear.¹ This is not supposed to happen to careful writers, or to those of us who flatter ourselves with that honorific. So what went wrong?

In brief, I greatly underestimated the public’s strong identification of psychiatric diagnosis with the categorical approach of the recent DSMs. But whereas my letter to the Times was indeed occasioned by DSM-5’s release in May, my argument in defense of psychiatric diagnosis was not a testimonial in favor of any one type of diagnostic scheme—categorical, dimensional, prototypical² or otherwise…

http://www.meactionuk.org.uk/The-Achilles-Heel.htm

Stephen Ralph | March 30, 2013

In recent years I have been considering the reliability of the whole “CFS/ME” diagnostic process.

From personal experience I have encountered numerous doctors who failed to possess the detailed specialist knowledge they needed to make a diagnosis of Behçet’s disease at both GP and specialist level.

From personal experience I have learned that standard blood tests or even CT/MRI scans or indeed other diagnostic tests such as endoscopy can and do fail to detect a complex clinical disease present in a patient.

I have no doubt that there is a diagnostic black hole between the insufficient knowledge of the doctor and pathologies that are not detectable by the basic tests they choose to request which produce negative results they then choose to rely on.

The diagnoses of “CFS/ME” and now Somatic Symptom Disorder have in my view been deployed by liaison psychiatry to exploit that black hole.

Continue reading →

ICD-11 Beta draft and Bodily Distress Disorders; Per Fink and Bodily Distress Syndrome: Parts One and Two

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ICD-11 Beta draft and Bodily Distress Disorders; Per Fink and Bodily Distress Syndrome Parts One and Two

Post #222 Shortlink: http://wp.me/pKrrB-2Dz

Part One

On January 6, I posted a brief update on proposals for the revision of ICD-10′s Somatoform Disorders based on what can be seen in the public version of the ICD-11 Beta drafting platform and on a book chapter by Professor, Sir David Goldberg. [1]

Professor Goldberg chairs the working group for revision of the mental health chapter of ICD-1o-PHC, the abridged, primary care version of ICD-10.

For the revision of ICD-10′s Somatoform Disorders sections for ICD-11, a WHO Expert Working Group on Somatic Distress and Dissociative Disorders has been assembled.

Professor Francis Creed (also a member of the DSM-5 Somatic Symptom and Related Disorders Work Group) is a member of this WHO working group, which is chaired by Professor Oye Gureje.

An April 2011 announcement by Stony Brook Medical Center states that Dr Joan E. Broderick, PhD had been appointed to the WHO Expert Working Group on Somatic Distress and Dissociative Disorders and that the first meeting of the group (said to consist of 17 international behavioral health professionals) was expected to be held in June 2011, in Madrid.

WHO has not published a list of  members of this working group or any progress reports and the names and affiliations of the 14 other members are unknown, so I am unable to confirm whether Professor Per Fink is a member of the group, which reports to the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders.

ICD-11 and Bodily Distress Disorders

ICD-11 is currently scheduled for completion in 2015/16. When viewing the public version of the Beta drafting platform please bear in mind the ICD-11 Revision Caveats: that the Beta draft is a work in progress, updated daily, is incomplete, may contain errors and is subject to change; not all proposals may be approved by the ICD-11 Revision Steering Committee or WHO classification experts, or retained following analysis of ICD-11 and ICD-11-PHC field trials.

The Bodily Distress Disorders section of 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

As the ICD-11 Beta drafting platform stands at the time of compiling this report, the existing ICD-10 Somatoform Disorders are proposed to be subsumed under or replaced by Bodily Distress Disorders, and Psychological and behavioural factors associated with disorders or diseases classified elsewhere.

The following proposed ICD-11 categories are listed as child categories under parent term, 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

No Definition or any other Content Model parameters have been populated for the proposed categories EC5, EC6 and EC7, which are new entities to ICD. (EC8 is a legacy category from ICD-10.)

From the information currently displaying in the Beta draft, it is not possible to determine:

• how ICD-11 proposes to define Bodily Distress Disorders;

• what diagnostic criteria are being proposed;

• whether diagnostic criteria would be based on a requirement for excessive or disproportionate psychological and behavioral characteristics in response to distressing somatic symptoms, such as illness anxiety, symptom focusing, catastrophising, maladaptive coping strategies, avoidance behavior or misattribution; or based on somatic symptom counts, or specific symptom clusters, or number of bodily systems affected, or a combination of these;

• how the three Severity Specifiers: Mild, Moderate and Severe would be categorized;

• how the three Severities would be assessed for within primary and secondary care;

• whether ICD-11′s proposed Bodily Distress Disorder construct is intended to mirror or incorporate DSM-5′s Somatic Symptom Disorder (SSD) construct, in line with ICD-11/DSM-5 harmonization, or

• whether it is intended to mirror or incorporate Per Fink’s Bodily Distress Syndrome (BDS) construct, or to combine elements from both;

• whether the Bodily Distress Disorder construct is proposed only to be applied to patients with distressing ‘medically unexplained somatic symptoms’ (MUS), or the so-called ‘Functional somatic syndromes’ (FSS), if the patient is considered to also meet the BDD criteria, or

• whether it is proposed to be inclusive of patients with distressing somatic symptoms in the presence of diagnosed illness and general medical conditions, if the patient is considered to also meet the criteria;

• whether the Bodily Distress Disorder construct is proposed to be inclusive of parents or caregivers perceived as encouraging maintenance of sick role behavior or over-involved.

• whether the Bodily Distress Disorder construct is proposed to be inclusive of children;

• whether it is proposed that all or selected of the following: Neurasthenia and Fatigue syndrome (F48.0), Chronic fatigue syndrome (indexed to G93.3 in ICD-10; classified in ICD-11 Beta draft as an ICD Title term in Chapter 6: Diseases of the nervous system), IBS (K58), and Fibromyalgia (M79.7) should be reclassified under Bodily Distress Disorders;

• whether the Bodily Distress Disorder construct is proposed to subsume ICD-10′s Hypochondriacal disorder with somatic symptoms or incorporate this entity under Illness Anxiety Disorder for ICD-11.

(For ICD-11, ICD-10′s Hypochondriacal disorder [F45.2] is currently proposed to be renamed to Illness Anxiety Disorder and located under ANXIETY AND FEAR-RELATED DISORDERS.)

 • what ICD-11 proposes to do with ICD-10′s Neurasthenia;

(ICD-10′s Chapter V Neurasthenia [F48.0] is no longer listed in the public version of the ICD-11 Beta draft. For ICD-11-PHC, the primary care version of ICD-11, the proposal is for the term Neurasthenia to be eliminated. Since terms used in ICD-11-PHC require corresponding terms in the main classification, the intention may be to eliminate Neurasthenia from the main version, or subsume under another term.) [2]

All that can be determined from the Beta draft is that these earlier ICD-11 Beta draft Somatoform Disorders categories appear proposed to be subsumed under or replaced with the new BDD categories, EC5, EC6 and EC7, set out 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]

I have previously reported that for ICD-11-PHC, the proposal, last year, was for a new disorder section called Bodily distress disorders, under which would sit new category Bodily stress [sic] syndrome.

This category is proposed for the 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.” [2]

In a future post (Part Three of this report), I shall be discussing emerging proposals for the ICD-11 construct, Bodily Distress Disorders, which may serve to fill in some of the gaps.

In the meantime, since it is unclear whether and to what extent the ICD-11 Bodily Distress Disorders category is proposed to mirror or incorporate the Bodily Distress Syndrome construct developed by Per Fink et al, Aarhus, Denmark, I am providing some material on Bodily Distress Syndrome in Part Two

Pages: 1 2

Slide presentation: Per Fink: Somatoform disorders – functional somatic syndromes – Bodily distress syndrome (EACLPP lecture, June 2012)

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Slide presentation: Per Fink: Somatoform disorders – functional somatic syndromes – Bodily distress syndrome (EACLPP lecture, June 2012)

Post #197 Shortlink: http://wp.me/pKrrB-2pN 

Slide presentation: Per Fink: Somatoform disorders – functional somatic syndromes – Bodily distress syndrome (EACLPP lecture, June 2012)

23 slides in PDF format (i.e. no PowerPoint viewer required)

       EACLPP Per Fink Somatoform Disorders

Aarhus University Hospital

The Research Clinic for Functional Disorders and Psychosomatics

Somatoform disorders – functional somatic syndromes – Bodily distress syndrome.

Need for care and organisation of care in an international perspective – EACLPP Lecture

Prof. Per Fink

MD, Ph.D, Dr.Med.Sc.

www.functionaldisorders.dk

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June 2012 EACLPP Annual Conference*

*The European Association of Consultation-Liaison Psychiatry and Psychosomatics (EACLPP) and the European Network of Psychosomatic Medicine (ECPR) have recently merged the two associations to create a new society – the European Association of Psychosomatic Medicine (EAPM).

The Annual Scientific Meeting of the European Association for Consultation-Liaison Psychiatry and Psychosomatics (EACLPP) and the European Conference on Psychosomatic Research (ECPR) was entitled

“Towards a New Agenda: Cross-disciplinary Approach to Psychosomatic Medicine”

The conference was held in the city of Aarhus, Denmark, on 27 – 30 June 2012.

For last year’s conference, a report was published. I will post any report coming out of this year’s conference.

A Conference Abstract document be accessed here:

http://www.eaclpp-ecpr2012.dk/Home/DownloadOral

Selected Extracts:

Page 61 Nagel A

Department of Psychosomatic Medicine and Psychotherapy, University Medical Center Hamburg-Eppendorf & Schön Klinik Hamburg-Eilbek, Germany, Voigt K Department of Psychosomatic Medicine and Psychotherapy, University Medical Center Hamburg- Eppendorf & Schön Klinik Hamburg-Eilbek, Germany

Diagnostic validity of Complex Somatic Symptom Disorder: Which combination of psychological criteria is best suited for DSM-5?

Page 17 Budtz-Lilly A

The Research Unit for General Practice, School of Public Health, Aarhus University, Denmark

Bodily Distress Syndrome: A new diagnosis for functional disorders in primary care

Page 19 Escobar J

Robert Wood Johnson Medical School, New Brunswick, NJ, USA

An Update on DSM-5

Page 32 Fjorback L

Aarhus University Hospital, Research Clinic for Functional Disorders and Psychosomatics

Mindfulness Therapy for Bodily Distress Syndrome – randomized trial, one-year follow-up, active control

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Notes on Fink et al and Bodily Distress Syndrome (BDS)

According to Fink and colleagues, Bodily Distress Syndrome is a unifying diagnosis that encompasses somatization disorder, so-called “medically unexplained symptoms” (MUS), fibromyalgia, irritable bowel syndrome and chronic fatigue syndrome and some other conditions which they consider to be closely related, with a likely shared underlying aetiology.

See paper: Fink P, Schröder A. One single diagnosis, bodily distress syndrome, succeeded to capture 10 diagnostic categories of functional somatic syndromes and somatoform disorders J Psychosom Res. 2010 May;68(5):415-26.

See article: Per Fink,a Marianne Rosendal b Understanding and Management of Functional Somatic Symptoms in Primary Care: The Concept of Functional Somatic Symptoms

aResearch Clinic for Functional Disorders and Psychosomatics, Aarhus University Hospital, Denmark
bResearch Unit for General Practice, University of Aarhus, Denmark

See Per Fink’s clinical trial for BDS: http://clinicaltrials.gov/ct2/show/NCT01518647

See BDS clinician/patient manual: Specialised Treatment for Severe Bodily Distress Syndromes (STreSS)

According to a June 2012 EACLPP Conference Abstract, the concept of Bodily Distress Syndrome (BDS) “is expected to be integrated into the upcoming versions of classification systems.”

The potential for inclusion of Bodily Distress Disorder/Syndrome within ICD-11 could have significant implications for patients, globally, who are diagnosed with one of the so-called “functional somatic syndromes.” These proposals require very close monitoring by patient organizations in those countries that will be implementing ICD-11, post 2015.

Research and clinical professionals, patient organizations and their professional advisors can register now with ICD Revision for input into the ongoing drafting process and urge organizations and professionals to engage in this process.

Abstracts, oral presentations, EACLPP Conference: 27 – 30 June 2012, Aarhus University Campus, Aarhus – Denmark

http://www.eaclpp-ecpr2012.dk/Home/DownloadOral

Extracts

Page 17 Budtz-Lilly A

The Research Unit for General Practice, School of Public Health, Aarhus University, Denmark

Bodily Distress Syndrome: A new diagnosis for functional disorders in primary care

Aim: Medically unexplained or functional symptoms and disorders are common in primary care. Empirical research has proposed specific criteria for a new unifying diagnosis for functional disorders and syndromes: Bodily Distress Syndrome (BDS). This new concept is expected to be integrated into the upcoming versions of classification systems.

And from Page 31 of the Conference Abstracts:

Fjorback L

Aarhus University Hospital, Research Clinic for Functional Disorders and Psychosomatics

Mindfulness Therapy for Bodily Distress Syndrome – randomized trial, one-year follow-up, active control

Objective: To conduct a feasibility and efficacy trial of mindfulness therapy in somatization disorder and functional somatic syndromes such as fibromyalgia, irritable bowel syndrome, and chronic fatigue syndrome, defined as bodily distress syndrome (BDS)…

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References and related material:

1] Patients with medically unexplained symptoms and somatisation - a challenge for European health care systems: A white paper of the EACLPP Medically Unexplained Symptoms study group by Peter Henningsen and Francis Creed: http://www.eaclpp.org/working_groups.html
http://www.eaclpp.org/documents/Patientswithmedicallyunexplainedsymptomsandsomatisation_000.doc

2] Creed F, Guthrie E, Fink P, Henningsen P, Rief W, Sharpe M and White. Is there a better term than “Medically unexplained symptoms”? J Psychosom Res: Volume 68, Issue 1, Pages 5-8 January 2010) discusses the deliberations of the EACLPP MUS study group. Editorial also includes references to the DSM and ICD revision processes: http://www.ncbi.nlm.nih.gov/pubmed/20004295

3] Fink P, Schröder A. One single diagnosis, bodily distress syndrome, succeeded to capture 10 diagnostic categories of functional somatic syndromes and somatoform disorders. J Psychosom Res. 2010 May;68(5):415-26. The Research Clinic for Functional Disorders and Psychosomatics, Aarhus University Hospital, 8000 Aarhus, Denmark:
http://www.ncbi.nlm.nih.gov/pubmed/20403500

Fink P, Toft T, Hansen MS, Ørnbøl E, Olesen F. Symptoms and syndromes of bodily distress: an exploratory study of 978 internal medical, neurological, and primary care patients. Psychosom Med. 2007 Jan;69(1):30-9.
http://www.ncbi.nlm.nih.gov/pubmed/17244846
Full text: http://www.psychosomaticmedicine.org/content/69/1/30.full

Fink P, Rosendal, M. Recent developments in the understanding and management of functional somatic symptoms in primary care. Current Opinion in Psychiatry 2008, 21:182–188

Rosendal M, Fink P, Falkoe E, Schou Hansen H, Olesen F. Improving the Classification of Medically Unexplained Symptoms in Primary Care. Eur. J. Psychiat. v.21 n.1 Zaragoza ene.-mar. 2007
Text: http://scielo.isciii.es/scielo.php?script=sci_arttext&pid=S0213-61632007000100004
PDF: http://scielo.isciii.es/pdf/ejpen/v21n1/improv3.pdf

4] EURASMUS  http://eurasmus.net/
The multidisciplinary European Research Association for Somatisation and Medically Unexplained Symptoms(EURASMUS) was formed to study the genetic, psychological and physiological mechanisms underlying bodily distress. Co-convenors: Francis Creed, Peter Henningsen

5] Notes from EACLPP Workgroup meeting in Budapest July 2011

http://www.eaclpp.org/working-groups.html

Report from Working group meeting on MUS/somatisation/bodily distress, Budapest July 1st 2011

“…We should find out whether the WHO group for classification of somatic distress and dissociative disorders will provide a better diagnostic system for these disorders.”

6] Article: ‘Heartsinks’ and weird symptoms by Tony Dowell, June 15, 2011.

Article Table: Functional somatic syndromes according to medical speciality:
http://www.nzdoctor.co.nz/media/671495/heartsinks.pdf

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

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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 categories for the forthcoming Primary Care version of ICD-11, “anxious depression” and “bodily stress syndrome (BSS)”.

“Bodily stress syndrome (BSS)” is currently proposed to replace ICD10-PHC’s “F45 Unexplained somatic complaints” which is the equivalent to ICD-10′s “F45 Somatoform Disorders” section.

For ICD11-PHC, it is proposed not to include the discrete category “Neurasthenia,” which would be subsumed under another category.

+++
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:

ICD10-PHC (the Primary Care version of ICD-10, which is sometimes written as ICD-10 PHC or ICD-10-PHC or ICD-10 PC), is a simplified version of the WHO’s ICD-10 for use in general practice and primary health care settings. This condensed classification system has rough but not exact equivalence to the main ICD-10 classifications.

For example, the ICD10-PHC mental and behavioural disorders chapter lists and describes 25 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 ICD10-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 section of ICD11-PHC.

Other members of the ICD11-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. ICD10-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 ICD11-PHC

Further information on ICD10-PHC and proposals for the mental health disorders section of ICD11-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

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

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

Post #190 Shortlink: http://wp.me/pKrrB-2jB


+++

This four page post is a revised version of content first published on July 2, 2012.

Information in this report relates to proposals for the World Health Organization’s forthcoming ICD-11, currently scheduled for pilot dissemination in 2015+; it does not relate to the existing ICD-10 or to the forthcoming US specific “clinical modification” of ICD-10, known as ICD-10-CM.

Caveat: The ICD-11 Beta drafting process is a work in progress over the next two to three years. The Beta draft is updated on a daily basis. Parent terms, category terms and sorting codes assigned to categories are subject to change as work on chapter reorganization progresses. Images and text in this posting may not reflect the most recently assigned categories and codes. This post reflects the Beta draft as it stood at July 24, 2012. Please also read the ICD-11 Beta Draft Caveats.

This report updates on recent changes to the Somatoform Disorders section of the ICD-11 Beta drafting platform. The Beta drafting platform can be accessed here:

Beta draft Foundation view:

http://apps.who.int/classifications/icd11/browse/f/en

Beta draft Linearization view:

http://apps.who.int/classifications/icd11/browse/l-m/en
+++

How do the Somatoform Disorders categories currently stand in ICD-10?

ICD-10 Tabular List Version: 2010 can be accessed here: http://apps.who.int/classifications/icd10/browse/2010/en

ICD-10 Chapter V “Somatoform Disorders”

This is the section of ICD-10 that corresponds with the Somatoform Disorders section in DSM-IV. There is a degree of correspondence between current categories for this section of ICD-10 and for DSM-IV, as set out in the (simplified) table, below.

For clinical descriptions and diagnostic guidelines for ICD-10 Somatoform Disorders see Page 129 of the “Blue book”:

ICD-10 Classification of Mental and Behavioural Disorders: Clinical descriptions and diagnostic guidelines: http://www.who.int/classifications/icd/en/bluebook.pdf

Current DSM-IV Codes and Categories for Somatoform Disorders and ICD-10 Chapter V Equivalents

[Ed: Neurasthenia is not categorized within DSM-IV.]

Source: Mayou R, Kirmayer LJ, Simon G, Kroenke K, Sharpe M: Somatoform disorders: time for a new approach in DSM-V. Am J Psychiat. 2005;162:847–855.
+++
+++
This screenshot shows how the ICD-11 Beta draft had stood at June 24, 2012:

ICD-11 Beta Draft: Morbidity Linearization view


+++

For ICD-11 Beta draft, the proposal in June 2012 had been to rename ICD-10′s F45 Somatoform Disorders parent category to Bodily Distress Disorders.

Three new proposed terms: 9R0 Mild bodily distress disorder; 9R1 Moderate bodily distress disorder; 9R2 Severe bodily distress disorder were inserted above the 9R3 thru 9R8 legacy categories imported from ICD-10.

ID : http://who.int/icd#F45

05 Mental and behavioural disorders [Chapter V in ICD-10]

[...]

BODILY DISTRESS DISORDERS  [F45 Somatoform Disorders > F40-F48 Neurotic, stress-related and somatoform disorders in ICD-10]

9R0 Mild bodily distress disorder  [New term to ICD]
9R1 Moderate bodily distress disorder   [New term to ICD]
9R2 Severe bodily distress disorder  [New term to ICD]
9R3 Somatization disorder  [F45.0 in ICD-10]
9R4 Undifferentiated somatoform disorder  [F45.1 in ICD-10]
9R5 Somatoform autonomic dysfunction   [F45.3 in ICD-10]
9R6 Persistent somatoform pain disorder  [F45.4 in ICD-10] 
    ›  9R6.1 Persistent somatoform pain disorder
    ›  9R6.2 Chronic pain disorder with somatic and psychological factors  [Not in ICD-10]
9R7 Other somatoform disorders  [F45.8 in ICD-10]
9R8 Somatoform disorder, unspecified  [F45.9 in ICD-10]

+++

Hypochondriacal disorder, coded at F45.2 in ICD-10, is currently renamed to Illness Anxiety Disorder for ICD-11 Beta draft and relocated under ANXIETY AND FEAR-RELATED DISORDERS:

http://apps.who.int/classifications/icd11/browse/l-m/en#/http%3a%2f%2fwho.int%2ficd%23F45.2

ID : http://who.int/icd#F45.2

9C5  ANXIETY AND FEAR-RELATED DISORDERS

      ›  9C5.6 Illness Anxiety Disorder

Continued on Page Two

Pages: 1 2 3 4

Final day: Submissions to third DSM-5 stakeholder review

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Final day: Submissions to third DSM-5 stakeholder review

Post #183 Shortlink: http://wp.me/pKrrB-2fn

The third and final stakeholder review is scheduled to close today, Friday, June 15.

I am collating copies of submissions on these pages.

A copy of my own comment is published below in text and PDF format. If you are unable to submit your own letter or short of time, please consider endorsing Mary Dimmock’s submission or one of the other submissions or one from last year with a note to say that although the criteria have been revised since last year, the underlying concerns remain.

 

Submission from UK advocate Suzy Chapman

Full text in PDF:     Chapman DSM-5 submission 2012

For the attention of the Somatic Symptom Disorders Work Group: Chair Joel E. Dimsdale, M.D.

Submitted by Suzy Chapman, advocate and parent/carer of young adult with chronic illness.
Website owner of http://dxrevisionwatch.wordpress.com formerly http://dsm5watch.wordpress.com

Submission in response to J 00 Somatic Symptom Disorder

I note that at June 14, APA has published no report on the results of the DSM-5 field trials. The majority of stakeholders wishing to provide feedback on this third release of draft proposals have no information on the make-up of the SSD study groups, the numbers studied within each of the three arms or the resulting data.

  • Stakeholders have been obliged to submit comment without the benefit of scrutiny of field trial results to inform their submissions. This is not acceptable.

For the first and second release of draft proposals, a 7 page “Disorders Description” document and a 14 page “Rationale/Validity Propositions/Justification of Criteria” document accompanied proposals and expanded on the website Proposals, Criteria, Rationale and Severity content for this category section. In the case of the latter, this included five pages of references to published and unpublished papers, including a number of papers authored or co-authored by members of the SSD Work Group. With the release of this third and final draft, no updated versions of these two documents were published that reflect significant revisions to SSD criteria between the second and third draft. The unrevised versions have been removed from the website.

  • Stakeholders have been denied access to the more expansive rationales and validity propositions set out within these two documents, the research papers that have been relied on and more detailed explanations for the revisions made to criteria between the second and third iterations in response to field trial results and internal/external input. If the Work Group considered these documents essential background information for the first and second drafts it is unreasonable not to have provided stakeholders with updated versions for this third draft.

The “Rationale/Validity Propositions/Justification of Criteria” document (as published May 4, 2011, for the second public review) states:

“…It is unclear how these changes would affect the base rate of disorders now recognized as somatoform disorders. One might conclude that the rate of diagnosis of CSSD would fall, particularly if some disorders previously diagnosed as somatoform were now diagnosed elsewhere (such as adjustment disorder). On the other hand, there are also considerable data to suggest that physicians actively avoid using the older 6 diagnoses because they find them confusing or pejorative. So, with the CSSD classification, there may be an increase in diagnosis.”

Continued on Page 2

Pages: 1 2 3 4 5 6

Patient submissions to third and final DSM-5 stakeholder review

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Patient submissions to third and final DSM-5 stakeholder review

Post #182 Shortlink: http://wp.me/pKrrB-2f5

This third and final stakeholder review is scheduled to close on Friday. If an extension is announced I will update.

As with the two previous draft reviews, in 2010 and 2011, I am collating copies of submissions on these pages.

If you have submitted to the Somatic Symptom Disorder proposals or are a professional, professional body or advocacy organization that has submitted a general response which includes reference to the  Somatic Symptom Disorder proposals I would be pleased to receive a copy for publication on this site. Submissions will be published subject to review and posted in PDF format if more than a few pages long.

The most recent submission received is from “US patient 1″. This is a detailed response which I am publishing in both text and PDF format. (Note that as far as I can see submissions can only be uploaded to the DSM-5 Development site using the RT or html text editor and not as file attachments.)

Submission from US patient 1 to J 00 SSD and J 02 Conversion Disorder (FNSD)

Full text in PDF:    DSM-5 submission

To: DSM-5 Task Force, Somatic Symptom Disorders Work Group
From: _______
Re: Response on the Proposals for Somatic Symptom Disorder and Conversion Disorder
Date: June 12, 2012

The DSM-5 Task Force has thus far failed to address the conceptual and practical problems inherent in DSM-IV somatoform disease constructs. Specifically, its proposals for Somatic Symptom Disorder and Conversion Disorder are actually more flawed than their equivalents in DSM-IV. The criteria for these two diagnoses rely excessively upon purely subjective judgments by clinicians and on the extent of a clinician’s awareness of known diseases, and lack the specificity required of valid diagnostic constructs.

To understand just how strongly subjectivity of clinical interpretation can impact diagnostic outcome when using somatoform disorder criteria on a disease with unknown etiology, it is instructive to consider in some detail Johnson et al’s “Assessing Somatization Disorder in Chronic Fatigue Syndrome”1, a study on the reliability of DSM-III-R somatization disorder (SD) criteria and related instruments when applied to patients with chronic fatigue syndrome (CFS). As the DSM-III-R SD diagnostic construct was less subjective and had greater specificity in terms of symptom presentation than the proposed SSD criteria, a careful examination of its flaws, as demonstrated by this study, offers a sobering perspective on real world application of SSD criteria.

CFS is a somatic disease of unestablished etiology; the United States Centers for Disease Control has stated that “Research shows that CFS is not a form of psychiatric illness” and that an essential criterion for its diagnosis is “severe chronic fatigue of 6 months or longer that is not explained by any medical or psychiatric diagnosis”. Nevertheless, in spite of such evidence, an opinion persists in the medical community that CFS is in some way a psychosomatic illness, an opinion which can easily influence clinicians in their diagnoses of patients who satisfy CFS criteria. Thus, as Johnson et al noted: “Whether or not symptoms of CFS are considered medically caused will strongly affect the incidence of SD within the CFS population…If the examiner recognizes that the patient’s CFS symptoms indicate a physical illness, the diagnosis of SD may not be made. Conversely, if the examiner does not consider CFS a medical illness, the patient’s symptom endorsement may lead to the diagnosis of SD.”

To begin with, Johnson et al discussed the problems with the DSM-III-R criteria for somatization disorder:

“According to DSM-III-R .. the diagnosis of somatization disorder (SD) requires a person to present with at least 13 symptoms for which no significant organic pathology can be found. The symptoms must have caused the person to take medication, to see a physician, or to have altered her/his lifestyle. The disorder begins before the age of 30 and has a chronic but fluctuating course. However, the diagnosis of SD is extremely problematic in terms of its validity because it involves a series of judgments that can be arbitrary and subjective [...] Specifically, the interviewer must decide if the symptom reported is attributable to an identifiable medical illness. Although such judgments are extremely difficult to make uniformly, the influence of bias introduced by the interviewer’s orientation on the prevalence of SD has not been adequately addressed.”

They noted the high variation between the estimates of SD prevalence in CFS patient cohorts reported by previous studies and concluded that it was “in itself indicative of the problem in defining SD”. They further pointed out that “The difficulty in distinguishing among somatic symptoms that are psychiatric vs. organic in origin can result in overdiagnosis of SD in medical illness, particularly chronic illness”, as they had observed in several studies by other authors on somatization in CFS.

Pages: 1 2 3 4 5

Final 2 days: Submissions to third DSM-5 stakeholder review

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Final 2 days for Submissions to third DSM-5 stakeholder review

Post #181 Shortlink: http://wp.me/pKrrB-2eX

There are only Thursday and Friday left before this third and final stakeholder review of proposals for DSM-5 categories and diagnostic criteria closes.

APA has failed to publish “full results” of its field trials – obliging professional, patient and public stakeholders to submit comment without the benefit of scrutinizing field trial data. That’s another APA schedule missed.

If any extension to the comment period is announced I will update.

The DSM-5 Development site has been slow to load, today, probably due to volume of traffic for both US and UK visitors and in some cases, not loading at all. If you are having problems try pulling up a page other than the Home Page and allow several minutes to load.

As with the two previous reviews, I am collating copies of submissions on these pages.

If you have submitted to the Somatic Symptom Disorder proposals or are a professional, professional body or advocacy organization that has submitted a general response which includes reference to the  Somatic Symptom Disorder proposals I would be pleased to receive a copy for publication on this site, subject to review, and posted in PDF format if more than a few pages long.

The most recent published submission is from “Joss”:

Submission from UK patient, Joss

I am writing to voice my concerns concerning the proposed category of Somatic Symptom Disorder.

Theoreticians of illness classification such as yourselves should be aware of the actual harm that could be caused to real people should this category be included in the DSM.

I would like to focus your minds with a real world example of how such a label might cause actual harm:

In 1998 I hurt my back. A scan showed a herniated disc but no further action was considered necessary. For the next three years my life was devastated by pain, I had bedsores and was pissing myself in bed from being unable to move. I believe that this was not taken seriously because I already had a pre-existing diagnosis of ME/CFS. The disbelief around my ME/CFS had already caused me problems obtaining the necessary help from medical services.

I believe that doctors thought I was ‘catastrophising’ and that had the SSD label been available to them they would have been able to categorise me as having:

‘Excessive thoughts, feelings, and behaviors related to these somatic symptoms or associated health concerns’

and, further, apply the three following highly subjective statements to me:

(1) Disproportionate and persistent thoughts about the seriousness of one’s symptoms.

(2) Persistently high level of anxiety about health or symptoms

(3) Excessive time and energy devoted to these symptoms or health concerns

I had CBT via a pain clinic but things got progressively worse. The CBT was of no help because it can not mend discs. I was, I admit, by this time feeling a tad suicidal because nobody would listen to me or believe that things were as bad as they were.

In 2001 I called an ambulance and went to the emergency department. The doctor was fine until he consulted my notes and saw I had an ME/CFS diagnosis. I was given morphine and they wanted to send me home.

It was only by refusing to leave that I gained admission to the hospital where a further scan was undertaken and it was found that a piece of disc had got in to my spinal canal and was pressing on my spinal cord. The next day I was in surgery and told that I would have been paralysed for life without it.

I would like you to reflect on how much worse the situation might have been if I had also been labelled as having SSD and on what happens when the SSD label is wrongly applied.

If someone is very ill and in pain is it not normal to feel distressed? How much distress is too much? Who decides what the right amount of distress for any given situation is?

What does ‘disproportionate’ mean in such a situation?

Is feeling anxious about such things not simply a normal and sane reaction to such circumstances?

And as for ‘excessive time and energy’ – well being bedridden and unable to move for whatever reason makes it a little hard to think of much else for much of the time.

To take such a lack of understanding of subjective experience of severe physical symptoms and construct a spurious and vague illness category from them is not only philosophically flawed it is dangerous to those who may be labelled in such a way.

This definition is far too vague and leaves far too much room for definitional ‘creep’, misinterpretation, misuse and even abuse.

It could certainly lead to possible missed diagnosis should a patient be placed in the SSD group and then continually disbelieved because of the label and left with no hope of getting to the bottom of the problem. To leave people without hope can only be called cruel

I am concerned that many illnesses such as ME/CFS, fibromyalgia and pain syndromes, and back problems which are often hard to diagnose and treat and can be a considerable burden to those who have to live with them will get drawn into the SSD basket and that, once there, patients will lose all hope of receiving any appropriate bio-medical treatment.

I am sure you are aware that medicine does move forward and that many illnesses once defined as psychiatric or psychological or simply beyond the reach of scientific clarity are now no longer considered ‘medically unexplained’. Just because there is currently no ‘medical’ explanation for a specific symptom and no understanding of how somebody might experience that symptom does not automatically render it a problem for psychology or psychiatry.

DSM-5 Somatic Symptoms Work Group submissions 2012: Last chance to tell SSD Work Group why it needs to ditch flawed, unsafe and unscientific proposals

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DSM-5 Somatic Symptoms Work Group submissions 2012: Last chance to tell SSD Work Group why it needs to ditch unsafe and scientifically flawed proposals

Post #165 Shortlink: http://wp.me/pKrrB-26q

Under the guise of “eliminating stigma” and eradicating “terminology [that] enforces a dualism between psychiatric and medical conditions” the American Psychiatric Association appears hell bent on colonising the entire medical field by licensing the application of a mental health diagnosis to all medical diseases and disorders.

 

Last chance to tell the SSD Work Group why it needs to ditch its unsafe and scientifically flawed proposals

The third DSM-5 Development public review of proposals for revisions to DSM-IV categories and criteria runs through May 2 – June 15. This will be the last opportunity for stakeholders to submit feedback.

Register on the DSM-5 Development site to submit comment or use your previous user name and log in details if you submitted during the earlier reviews. For information on registration see this post from 2011.

One again, I’m collating copies of submissions to the Somatic Symptom Disorders Work Group on a dedicated page from international patient organizations, medical, allied health and other professional stakeholders, patients, advocates and professional bodies.

Any consumer groups, medical professionals, allied health professionals, social workers, lawyers etc with concerns for the Somatic Symptom Disorders proposals are welcome to forward copies of submissions for publication here.

If you are looking for submissions for the first and second public reviews, you need these pages:

Submissions to first public review (February 10 – April 20, 2010): http://wp.me/PKrrB-AQ

Submissions to second public review (May 4 – July 15, 2011): http://wp.me/PKrrB-19a

This year’s submissions are being collated here as they come to my attention:

DSM-5 SSD Work Group submissions 2012 

Shortlink for submissions page is: http://wp.me/PKrrB-1Ol

Today I am publishing UK patient and advocate, Peter Kemp’s submission to the SSD Work Group:

Submission from Peter Kemp, UK advocate

How people with M.E. and CFS (and other illnesses) could be misdiagnosed as Somatic Symptom Disorder using DSM-5

Misdiagnosis is a common occurrence by all accounts. Therefore medical definitions or criteria should not only assist diagnosis – they should positively aim to prevent or reduce misdiagnosis.

Somatic Symptom Disorder (SSD) as proposed for DSM-5 allows too many possibilities for misdiagnosis. Misdiagnosis that could have disastrous consequences. This is so readily foreseeable that this must be addressed.

Once a physician diagnoses SSD, they have effectively judged the patient incompetent to interpret their own symptoms. If the patient has an unrecognised disease that progresses, or develops a new disease and reports the new symptoms to the doctor, what will the doctor do? The patient is untrustworthy. The doctor is busy and has ‘real’ patients to treat.

It is inevitable that even patients that are correctly diagnosed with SSD will sooner or later present with actual physical disease. The diagnosis of SSD could predictably obstruct investigation and treatment of their disease. This obstruction could be directly attributed to the use of an SSD diagnosis.

SSD should not be included in DSM-5 unless specific guidance to prevent misdiagnosis are included and these have been proven effective.

Imagine a doctor with a patient presenting in the early stages of MS. MS can be difficult to diagnose. When Professor Poser reviewed 366 MS diagnoses made by board certified neurologists, he found that only 65% had been correctly diagnosed (http://www.cfids.org/archives/2000rr/2000-rr4-article03.asp ).

It can take years before the signs, symptoms and tests are clear enough to make a diagnosis (http://ms.about.com/popular.htm ). The symptoms of ‘pre-diagnosis’ MS can be very distressing and the lack of a laboratory test or firm diagnosis may add to a patient’s worries. The patient may try all sorts of strategies to try and find out about, and improve what is happening to them. They may appear to pester their GP, they may appear neurotic and irrational.

Now imagine that in accordance with DSM-5, a doctor gives them a diagnosis of the proposed SSD. The patient has an official diagnosis in their medical records that amounts to ‘hypochondriac’. What effect will that have on the patient’s chances of getting the necessary investigations as the disease progresses? How is it going to help them to cope with their distressing physical symptoms now they have been explained as psychosomatic? The time it will take for them to get a true diagnosis may be further prolonged, and the years spent waiting could be made even more harrowing because of inaccurate psychological labelling.

Therefore sensible doctors will avoid diagnosing SSD. Foolish doctors risk spending their time at professional disciplinary hearings and in court; and this still might not adequately reflect the amount of suffering their diagnosis of SSD could cause.

The rationale for SSD also states: “The proposed classification for Somatic Symptom Disorders deemphasizes the central role of medically unexplained symptoms. Instead, it defines disorders on the basis of positive symptoms (distressing somatic symptoms + excessive thoughts, feelings, and behaviors in response to these symptoms).”

I believe it safe to say that ‘positive symptoms’ does not mean ‘good symptoms’ or ‘symptoms with the right attitude’. I imagine it means definite, definable, testable and maybe even measurable. But when terms like ‘distressing’ and ‘excessive’ are used to measure symptoms, the definition is not a definition. It is not even a convincing concept.

The idea is right, to base the definition on signs and symptoms that are actually present, as long as these sufficiently differentiate the condition from other conditions and do not lead to too many misdiagnoses. Unfortunately, they would predictably fail to achieve this because the definition proposed is significantly subjective.

The ‘DSM-5 Proposed Revision’ could certainly misdiagnose M.E. This would be a serious matter as M.E. is classified by the WHO ICD as a neurological illness. A doctor whose diagnosis of SSD was contradicted by a doctor that diagnosed M.E could find themselves in an awkward legal situation. The implications to the proper care of a patient, due to misdiagnosing a serious neurological illness as a neurotic illness hardly bear thinking about. Hindering necessary investigations and treatment might only be a small part of the problems this might create.

The latest proposal states:

“Somatic Symptom Disorder

Criteria A, B, and C must all be fulfilled to make the diagnosis:”

“A. Somatic symptoms: One or more somatic symptoms that are distressing and/or result in significant disruption in daily life.”

The Myalgic Encephalomyelitis: International Consensus Criteria – states:
(http://www.meassociation.org.uk/?p=7173)

“A patient will meet the criteria for post-exertional neuroimmune exhaustion (A), at least one symptom from three neurological impairment categories (B), at least one symptom from three immune/gastro-intestinal/genitourinary impairment categories (C), and at least one symptom from energy metabolism/transport impairments (D).”

The Canadian Expert Consensus Panel Clinical Case Definition for ME/CFS states:
(http://www.cfids-cab.org/MESA/ccpccd.pdf)

“A patient with ME/CFS will meet the criteria for fatigue, post-exertional malaise and/or fatigue, sleep dysfunction, and pain; have two or more neurological/cognitive manifestations and one or more symptoms from two of the categories of autonomic, neuroendocrine and immune manifestations; and adhere to item 7.”

Therefore every patient with M.E. or CFS or ME/CFS will present with ample distressing and disruptive symptoms to satisfy DSM-5 Somatic Symptom Disorder Part A.

“B. Excessive thoughts, feelings, and behaviors related to these somatic symptoms or associated health concerns: At least one of the following must be present.

(1) Disproportionate and persistent thoughts about the seriousness of one’s symptoms.
(2) Persistently high level of anxiety about health or symptoms
(3) Excessive time and energy devoted to these symptoms or health concerns”

The NICE Guidelines for CFS/ME state:
(http://www.nice.org.uk/nicemedia/live/11824/36191/36191.pdf )

“People with mild CFS/ME are mobile, can care for themselves and can do light domestic tasks with difficulty. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often take days off, or use the weekend to cope with the rest of the week.”

Therefore even the mildest form of CFS sees persons who have often greatly reduced or stopped socializing, hobbies, sports etc.; and spend much of the time formerly devoted to these pursuits in resting and recuperating their energy to continue working.

When this level of disruptive illness goes on for more than 6 months, people will naturally and rationally become worried. They will be fearful of what is happening and what is going to happen. They will be anxious about their responsibilities, their job, their family and friend connections – everything. They may quite naturally seek help from their GP. They may be given antidepressants, sleeping medications, pain killers, etc. All these combined with a chronic illness necessitate frequent visits to their GP. They may try alternative therapies (possibly after having found what their GP offered did not help them). They may alter their diet, take nutritional supplements, go for acupuncture, homeopathy or other type of therapy.

And here is the rub; if one does not believe they are actually physically ill, their ‘thoughts, feelings and behaviours’ will certainly appear ‘excessive’. This could apply not just to CFS, but many other high impact and distressing illnesses.

The ‘Rationale’ for SSD states: “Undifferentiated Somatoform Disorder has such a low threshold that it is applicable to a very large proportion of patients attending primary care. The same low threshold issue occurs with Somatoform Disorder NOS.”

The proposed definition does not address this problem. It might actually make it worse. If doctors believe that SSD has a valid definition they may start actually using it – then God help us.

If a person with just ‘mild’ CFS is justified in being worried, justified in resting so they can keep working, justified in searching for something that will improve their health – then anyone with the illnesses mentioned could meet the criteria to satisfy DSM-5 Somatic Symptom Disorder Part B.

The only proviso is that to some extent this could depend on interpretation of the subjective aspects of part B (there may be more detailed explanations elsewhere – this essay is based on what is included here). What is ‘excessive’, ‘persistantly’, ‘disproportionate’, ‘seriousness’?*

The same ‘Rationale’ for SSD remarks on: “The lack of positive psychological features in the definition”. Unfortunately the proposed criteria attempt to define “positive psychological features” based entirely upon a physician’s subjectivity. That is not, in any sense, a definition.

This is why I believe the circular-reasoning trap constructed with SSD makes it risible. They construct a concept for SSD. They construct criteria for the concept. Chicken-egg or egg-chicken, take your pick.

The problem with this approach is that it does not IDENTIFY the psychological condition they are trying to define. SSD cannot exist only by differentiating features, this is true. Yet differentiating is an essential step. SSD must discern from other anxiety or depressive disorders. It must be discern from normal or rational anxiety, whether that anxiety is acute, chronic or fluctuating. It must discern from anxiety or depressive disorders due to neurological illness or injury. It must discern from physical illness that has not yet been diagnosed, or from physical illness for which diagnosis is complex or often delayed. It must discern from new or emerging diseases. If SSD cannot discern from these, then misdiagnosis could be a common and predictable result.

The criteria should define the disorder but they don’t. They attempt to define the criteria. The disorder should inform the criteria, but it doesn’t. The disorder is lost in a confusion of subjective terms, ‘excessive’, ‘persistantly’, ‘disproportionate’, ‘seriousness’.

The only way it can work is if someone (and here’s another trap); someone who believes that SSD exists and is defined by the DSM, decides what ‘excessive’ and ‘disproportionate’ etc., mean. Then all they have to do, is reach exactly the same conclusion that every other physician using the DSM would reach in the same position. Bingo. A diagnosis that does not mean anything other than what the ‘diagnoser’ decides that it means. And they better hope they got it right, otherwise a good lawyer will wipe the floor with them.

“C. Chronicity: Although any one symptom may not be continuously present, the state of being symptomatic is persistent (typically >6 months).”

This is either synchronicity, or they got this direct from the NICE Guidelines for ‘CFS/ME’. The NICE Guidelines ‘Making a diagnosis’ state:

“The range of presenting symptoms is wide, and fatigue and pain may not always be the prominent disabling features at initial presentation.”

“Symptoms tend to vary in intensity and type over a period of weeks or months (and evolve into what is more clearly CFS/ME with time)”

Mild CFS will satisfy DSM-5 Somatic Symptom Disorder Part C. Therefore every person with M.E. or CFS could get a diagnosis of SSD unless they can convince any psychiatrist they encounter that they are not ‘excessive’, ‘persistent’, ‘disproportionate’, or that they don’t believe they are seriously ill.

A serious anomaly might arise with SSD in both M.E. and CFS. These illnesses can start with only fatigue or just a few symptoms. Extreme fatigue and pain might be all that a patient reports. However, if the illness continues over years, some symptoms may improve whilst new ones appear. Problems such as sensory impairments, bladder and bowel problems, immune dysfunction, and a host of neurological symptoms (to name but a few) can develop.

Will the M.E. or CFS patient then be vulnerable to having their previous diagnosis ‘cancelled-out’ by a new diagnosis of SSD, because they developed too many symptoms and are worried about them?

The SSD development group have repeated previous flaws they identified as creating the need for new definitions. They have not defined anything. Yet there may be some positive outcome from their efforts. I imagine that some medical insurance company executives must be rubbing their hands together in glee, but medical negligence lawyers should be turning cartwheels.

Peter Kemp

*Editor: Accompanying the first and second release of draft proposals for the Somatic Symptom Disorders categories, two quite lengthy PDF documents that expanded on the disorder descriptions and validity/rationales were published in conjunction with the webpage Proposed Revision, Rationale and Severity texts.

For this third draft, no PDFs have been published that reflect the Work Group’s revisons since release of the second draft, last May, or set out its rationales in detail. No draft DSM-5 textual content, more comprehensive disorder descriptions or field trial evaluations are available for public scrutiny other than brief, revised Rationale texts:

Criteria for Proposed Revision J00 Somatic Symptom Disorder

Rationale text for category J00 Somatic Symptom Disorder:

Related material:

1] DSM-5 proposals for Somatoform Disorders revised on April 27, 2012

2] DSM-5 Development site

3] Somatic Symptom Disorders proposals