Translations for Update 2: Human Rights denied: Something rotten in the state of Denmark: Karina Hansen’s story

Post #269 Shortlink: http://wp.me/pKrrB-3hQ

Translations of June 19, 2013 report by Rebecca Hansen, chairman, ME Foreningen, Danmark (ME Association, Denmark).

KHBW2

Karina Hansen has now been detained in Hammel Neurocenter against her will for 6 months

If there is a Norwegian translation or other languages other than those below, I’d be pleased to have links to add to this page. You can contact me via the Contact form.


English: http://wp.me/pKrrB-390 Update 2: Human Rights denied: Something rotten in the state of Denmark: Karina Hansen’s story

You are killing me.” Experimental treatment forced on a severely ill ME patient


Dansk: http://wp.me/pKrrB-3gj Opdater 2: Menneskerettighederne nægtet: Noget råddent i staten Danmark: Karina Hansen

”I slår mig ihjel.” Svært ME syg patient tvinges til eksperimentel behandling


Deutsch  | UFOCOMES-blog

Ihr bringt mich um.” Schwer an ME erkrankte Patientin wird zu experimenteller Behandlung gezwungen


Nederlandse  |  ME|cvs Vereniging   |  PDF Nederlandse vertaling

“Jullie vermoorden mij.” Ernstig zieke ME-patiënte gedwongen tot een experimentele behandeling


For earlier posts:

May 11, 2013: Something rotten in the state of Denmark: Karina Hansen’s story: http://wp.me/pKrrB-2Xc

May 25, 2013: Human Rights denied: Something rotten in the state of Denmark: Karina Hansen’s story: Update 1: http://wp.me/pKrrB-35o

May 25, 2013: Menneskerettighederne nægtet: Noget råddent i staten Danmark: Karina Hansen: Opdater 1: http://wp.me/pKrrB-36e

Information on ME Foreningen postcard campaign and petition on Facebook or here: www.me-foreningen.dk

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

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Opdater 2: Menneskerettighederne nægtet: Noget råddent i staten Danmark: Karina Hansen

Post #267 Shortlink: http://wp.me/pKrrB-3gj

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”I slår mig ihjel.”

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KH5

Rebecca Hansen, lay advocate to the Hansen family, has issued a further update on Karina’s situation.

Dansk udgave

Svært ME syg patient tvinges til eksperimentel behandling

Af Rebecca Hansen, formand for ME Foreningen

”I slår mig ihjel” gentager svært ME-syge Karina Hansen til sygeplejerskerne, når hun tvinges til kontroversiel og udokumenteret behandling, som kaldes GET (gradvist øget træning).

Karina, 24 år, har Myalgisk Encephalomyelitis (ME), en neuro-immun sygdom, som siden 1969 har haft World Health Organization koden G93.3.

ME-eksperterne savner stadig svar på mange aspekter af sygdommen, men der er bred enighed om, at ME-patienter lider af en dysfunktion i evnen til at producere energi og genvinde kræfter efter motion og enhver form for anstrengelse. Dette kaldes post-exertional malaise – eller PEM. Forskning har vist, at GET forværrer tilstanden hos størstedelen af let ramte ME-patienter [1] [2] [3].

I Belgien behandlede statsfinancierede referencecentre let angrebne ME-patienter med GET, men en evaluering af disse centre viste, at GET ikke var effektiv, og at patienterne faktisk kunne arbejde MINDRE efter de havde fået behandlingen [4] [5].

Read more of this post

Update 2: Human Rights denied: Something rotten in the state of Denmark: Karina Hansen’s story

Post #266 Shortlink: http://wp.me/pKrrB-390

Update: Mental Health Act and related documents added at end of report.

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She tells the nurses, “You are killing me.” 

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KH6

Rebecca Hansen, lay advocate to the Hansen family, has issued a further update on Karina’s situation.

Experimental treatment forced on a severely ill ME patient

By Rebecca Hansen, chairman ME Association, Denmark

“You are killing me” is what severely ill Danish ME patient, Karina Hansen, has repeatedly said to her nurses while she is being forced to receive a controversial and unproven treatment known as Graded Exercise Therapy.

Karina, 24, has Myalgic Encephalomyelitis (ME) which is a neuro-immune illness and has had a World Health Organisation code of G93.3 since 1969.

Much is still unknown about ME, but ME experts agree that ME patients have a dysfunction in their ability to produce energy and to recover from exercise or any type of exertion.

This is called post-exertional malaise or PEM. Studies have shown that GET makes the vast majority of mildly affected ME patients worse [1] [2] [3].

In Belgium, state-funded Reference Centers treated mildly affected ME-patients with GET, but an evaluation of these centers showed that GET was not effective and patients could actually work LESS after getting the treatment [4] [5]. The Belgian Minister of Health officially declared that GET should not be regarded as a curative therapy for ME [6].

Karina has severe ME and no studies of GET have been done on this patient group. Therefore treating severely ill ME patients with GET can only be seen as experimental.

It is illegal to force experimental treatment on patients in Denmark.

The doctors who have ordered this treatment are psychiatrists Nils Balle Christensen and Per Fink from The Research Clinic for Functional Disorders and Psychosomatics (RFD). It is completely unacceptable that Danish authorities are allowing the psychiatrists to treat Karina in this way.

Karina has been held against her will since February 12, 2013, and is forced to undergo GET every day. In 2011, Karina made it clear to the Medical Officer that she did not want GET. She cried when she told him that she wanted to get better, and had tried GET before, but it always made her worse.

The Medical Officer accepted that Karina was mentally healthy and capable of making her own decisions about her treatment. It was agreed she would not be forced to have any unwanted treatment. But this agreement has been broken when Karina was committed. She is now forced to endure GET every day.

Karina is so ill that she usually only has the energy to speak one word at a time. She does best with yes/no questions and questions that do not require complex thought. When her nurses push her too much, she gets angry and cries. Sometimes she summons the energy to say “You are killing me.” But the treatment goes on. If she says nothing, they assume she is cooperating.

I received this information on May 31, 2013, when I attended a meeting with Karina’s parents, her sister, an occupational therapist who treats Karina and a doctor from Hammel Neurocenter, where Karina is being held. The goal of the meeting was to discuss the list of restrictions about visits that Nils Balle Christensen (NBC) had sent to Karina’s parents. NBC is in charge of Karina’s care and Per Fink (PF) is his boss.

Karina’s parents were told they had to have this meeting is they wanted to see Karina. They had not been allowed to see her since she was committed.

Below are the major points from that meeting.

• Karina’s mother (parents) followed the recommendations of ME experts when caring for Karina at home. NBC and PF are ignoring those recommendations.

• At home Karina was allowed to decide her own treatment, but NBC and PF do not allow her to choose her treatment.

• When Karina was committed, all medication was stopped. The staff did not know what medicine she had been taking before she has committed. At home she took cortisol and supplements that were recommended by a doctor.

• Karina refuses to take any supplements or medicine of any kind at the hospital.

• Nils Balle Christensen and Per Fink do not believe that Karina has ME. The doctor we met on May 31 receives his information about Karina and ME from NBC and PF. This doctor said that ME is a “figment of the imagination” and doctors who believe in ME are “imbeciles.” (NBC and PF are officially in charge of all ME patients in Denmark.)

• Karina has been diagnosed with ME four times: twice by ME specialists, once by a rheumatology hospital and once by a psychiatrist.

• NBC and PF are not interested in working with ME specialists or anyone from outside their facility. I offered to have an ME expert come and examine Karina, but that was turned down.

• NBC and PF believe that Karina has a mental illness and probably had it for some time before she became bedbound. The doctor we spoke with said that treating Karina after the recommendations of ME specialists was malpractice and had made her worse. He would not tell the family the name of the illness they think Karina has, or what they think started it, but they were sure that the treatment for this mysterious mental illness was GET. Remember, there is NO evidence that Karina is or ever was mentally ill, as she was always declared mentally healthy.

• The written restrictions about visitations stated that Karina’s parents would only be allowed to see her if they would appear to support the treatment (GET) that Karina is being forced to have. They had not been allowed to visit before, because there was a suspicion that they would say something negative about the treatment. A nurse must be with them at all times to make sure Karina was not “affected in an inappropriate direction.”

• Karina was extremely ill the first week or so after she was committed to Hammel Neurocenter. Stress and overexertion make ME worse and Karina used a lot of energy trying to get help when they committed her. She repeatedly told them she did not want to be there and she made 26 phones calls for help, including one to the police, before her phone died. She has improved in comparison to that first week, but there is no significant improvement from when she was at home. She still cannot walk and she is still very anemic.

• When asked if Karina could speak in complete sentences, the doctor told us: She says and has always said, “You are killing me.” That is a whole sentence.

• They had recently put her on suicide watch because she had been crying a lot. This was never a concern when she was at home.

• The State Administration for Central Jutland (Statsforvaltningen Midtjylland) has appointed a legal guardian for Karina so it is now it is up to him to decide what is best for Karina.

After the meeting, I wrote to Karina’s guardian, telling him about ME and some of Karina’s history. I hope he will take his job seriously by reading all the material in the case and do what is best for Karina. I don’t know if I will receive information about Karina in the future.

Nils Balle Christensen, Per Fink and The Research Clinic for Functional Disorders and Psychosomatics are ordering the forced, experimental treatment of GET on Karina Hansen.

Their unfounded theory that ME can be cured by GET is behind this misguided “research.” And their actions are supported by the Danish government. These are the parties that should be held responsible for the actions taken against Karina and her family.

But the staff at Hammel Neurocenter are not completely innocent. They are blindly following the orders given by NBC and PF. When I first heard Karina would be at Hammel Neurocenter I had hope, because I thought they might be open to learning about ME and that maybe they could help her. I had hoped that they would do the testing that is recommended in the International Consensus Criteria for ME [7]. I thought they might find some things they could treat her for – such as hormone imbalances, immune dysfunction, low blood volume, chronic infections, etc.

Many imbalances are found in ME patients and when those things are treated, quality of life can improve. I had hoped that the staff would be open to learning about the disease that Karina has and do some critical thinking into what ME is. But after my visit to the hospital on May 31, 2013, these hopes are completely crushed.

All orders about Karina’s care come from NBC and PF and the staff is uncritically following them. I hope the staff at Hammel will think hard about what is being done to Karina and decide if they want to be a part of it.

Karina needs is to be in a place that understands ME and respects the special needs of severely ill ME patients. The Research Clinic for Functional Disorders and Psychosomatics clearly has no understanding of ME and is not interesting in learning anything that goes against their theory that ME is “a figment of the imagination.” They should not be in charge of ANY ME patient. And as long Nils Balle Christensen and Per Fink are giving the orders, Hammel Neurocenter is an unfit place for Karina.

Karina’s lawyer, the ME Association, Denmark, and thousands of people who are aware of Karina’s situation continue to fight for her rights.

1 http://www.me-foreningen.dk/filer/Forskning_viser_CBT_og_GET_ikke_helbreder_ME.pdf
2 http://www.iacfsme.org/LinkClick.aspx?fileticket=Rd2tIJ0oHqk%3D&tabid=501
3 http://www.pugilator.com/awareness/is-this-the-end-for-the-belgian-cfs-reference-centers/
4 http://www.me-foreningen.dk/images/stories/me-cfs/pdf/cbt-%20get%20reivew%20twisk-maes.pdf
5 http://me-foreningen.com/meforeningen/innhold/div/2012/09/CFS-la-b%C3%AAte-noire-of-the-Belgian-Health-Care-System-Maes-Twisk.pdf
6 http://www.biomedcentral.com/1741-7015/8/35
7 http://www.me-foreningen.dk/images/stories/me-cfs/pdf/ic%20primer%20-denne%20anbef.%20kopi%203.pdf

Rebecca Hansen, chairman, ME Association, Denmark

Related documents

With the caveat that this document relates to English Law:
http://www.pbs.plymouth.ac.uk/PLR/vol3/Perrin.pdf
Plymouth Law Review (2010)
CHALLENGING COMPULSORY ADMISSION TO HOSPITAL UNDER THE MENTAL HEALTH ACT 1983:
DOES THE LAW ADEQUATELY PROTECT THE RIGHT TO LIBERTY?
Harry Perrin
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Danish Mental Health Act
http://www.netpsykiater.dk/htmsgd/psykiatriloven.htm
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Mental health law in Denmark (From Page 86)
Mette Brandt-Christensen MD PhD
http://www.rcpsych.ac.uk/pdf/IPv9n4.pdf
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Compulsory Admission and Involuntary Treatment of Mentally Ill Patients – Legislation and Practice in EU-Member States
Final Report, Mannheim, Germany, May 15, 2002, Hans Joachim
http://ec.europa.eu/health/ph_projects/2000/promotion/fp_promotion_2000_frep_08_en.pdf
Denmark: From Page 60
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CommDH/IssuePaper (2012) 2
WHO GETS TO DECIDE?
Right to legal capacity for persons with intellectual and psychosocial disabilities, Strasbourg, 20 February 2012
https://wcd.coe.int/ViewDoc.jsp?id=1908555
(Information on guardianship)

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Clarification

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.
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.
All enquiries in relation to any petitions or other initiatives, or 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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Previous posts

Something rotten in the state of Denmark: Karina Hansen’s story: http://wp.me/pKrrB-2Xc

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 in English and Danish)

Karina Hansen initiatives: A clarification: http://wp.me/pKrrB-38n

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Links

Website for the ME Association, Denmark, ME Foreningen, Danmark www.me-foreningen.dk

Official petition launched and sponsored by the ME Association of Denmark, and approved by the Hansen family: http://www.ipetitions.com/petition/postcardtokarina/
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
Opdater 2: Menneskerettighederne nægtet: Noget råddent i staten Danmark: Karina Hansen: http://wp.me/pKrrB-390
Update 2: Human Rights denied: Something rotten in the state of Denmark: Karina Hansen’s story: http://wp.me/pKrrB-390
Update 2: Ontkenning van mensenrechten: Iets verrot in de staat van Denemarken: Het verhaal van Karina Hansen: http://wp.me/pKrrB-390
Update 2: Menschenrechtsverstoß: Etwas ist faul in Dänemark: Karina Hansens Geschichte: http://wp.me/pKrrB-390
Update 2: Droits de l’Homme: Il y a quelque chose de pourri au royaume du Danemark: l’histoire de Karina Hansen: http://wp.me/pKrrB-390

Karina Hansen initiatives: A clarification

Post #260 Shortlink: http://wp.me/pKrrB-38n

Karina Hansen initiatives: Clarification notice

I have now published three posts on my site in relation to the Hansen family’s situation:

Something rotten in the state of Denmark: Karina Hansen’s story: http://wp.me/pKrrB-2Xc

(In English)

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

(Update in English)

Menneskerettighederne nægtet: Noget råddent i staten Danmark: Karina Hansen: Opdater 1: http://wp.me/pKrrB-36e

(Update in English and Danish)

Clarification

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.

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.

All enquiries in relation to any petitions or other initiatives, or 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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The official petition launched and sponsored by ME Foreningen, Danmark and approved by the Hansen family can be found here: http://www.ipetitions.com/petition/postcardtokarina/

For more information on the ME Foreningen, Danmark petition go here on Facebook

Website:

ME Foreningen, Danmark
www.me-foreningen.dk

For first report (in English) see: Something rotten in the state of Denmark: Karina Hansen’s story: http://wp.me/pKrrB-2Xc

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
Menneskerettighederne nægtet: Noget råddent i staten Danmark: Karina Hansen: Opdater 1: http://wp.me/pKrrB-36e
Human Rights denied: Something rotten in the state of Denmark: Karina Hansen’s story: Update 1: http://wp.me/pKrrB-35o
Ontkenning van mensenrechten: Iets verrot in de staat van Denemarken: Het verhaal van Karina Hansen: Update 1: http://wp.me/pKrrB-35o
Menschenrechtsverstoß: Etwas ist faul in Dänemark: Karina Hansens Geschichte: Update 1: http://wp.me/pKrrB-35o
Droits de l’Homme: Il y a quelque chose de pourri au royaume du Danemark: l’histoire de Karina Hansen: Update 1: http://wp.me/pKrrB-35o

New Danish and German guidelines for “Bodily distress” and functional disorders published

Post #259 Shortlink: http://wp.me/pKrrB-36F

New Danish and German guidelines for “Bodily distress” and “functional disorders”

Update:

Slide presentation [23 slides in PDF format]

http://www.regionsyddanmark.dk/dwn225587

Or open on Dx Revision Watch site:

Session 4 – Medicinsk uforklarede symptomer – Marianne Rosendal

Medicinsk uforklarede symptomer og funktionelle lidelser

“Medically unexplained symptoms and functional disorders”

Marianne Rosendal, Research Unit for General Practice, Institute of Public Health, Aarhus University

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Related information:

Trygfonden invites applications for funding for research on functional disorders
http://www.kronisktraethedssyndrom.dk/Diverse/Trygfonden.pdf
Trygfonden has allocated 48 million for research on functional disorders. The application deadline for the last 28 million kroner is 6 April 2010.
Lene Toscano får 3,3 mio. kr. til formidling af viden om funktionelle lidelser
Lene Toscano gets 3.3 million kr. for dissemination of knowledge about functional disorders
Specialist in General Medicine Lene Toscano, Aarhus University Hospital, has received 3,336,458 kr. from TrygFonden to examine how best to communicate and share knowledge about functional disorders.

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As previously posted:

In February, I published information on the status of current proposals for revision of ICD-10 “Somatoform Disorders” for the ICD-11 core version, as displayed in the ICD-11 Beta drafting platform, and on proposals for ICD-11-PHC, the abridged primary care version of ICD.

In Part Two of that post, I compiled information on “Bodily Distress Syndrome,” a disorder construct developed by Per Fink and colleagues initially for research studies, now used in clinical practice at The Research Clinic for Functional Disorders and Psychosomatics, Aarhus.

See post #222 ICD-11 Beta draft and Bodily Distress Disorders; Per Fink and Bodily Distress Syndrome Parts One and Two

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Today, I have three new “Bodily Distress Disorders” related items to bring to your attention:

1. The World Psychiatric Association (WPA) is holding its 2013 International Congress in October, in Vienna. Four topics relating to “Bodily Distress Disorders” are being presented:

Bodily Distress Disorders and the new classifications

Bodily Distress Disorders at the work place: prevention and treatment

A stepped care approach for bodily distress disorders: the new interdisciplinary German guideline

Raising the awareness for the health political relevance of Bodily Distress Disorders – a European agenda

Symposia presenters include:

Francis Creed (member of the DSM-5 Somatic Symptom Disorders Work; member of the WHO Working Group on Somatic Distress and Dissociative Disorders, reporting to the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders; co-author book [1], paper [2]).

Per Fink (The Research Clinic for Functional Disorders and Psychosomatics, Aarhus, Denmark, co-author book [1], paper [3]).

Peter Henningsen (Co-author book [1]).


2] A new German guideline has been published, with summary texts in German and English language:

Neue Leitlinien zu funktionellen und somatoformen Störungen

CLINICAL PRACTICE GUIDELINE Non-Specific, Functional, and Somatoform Bodily Complaints

Rainer Schaefert, Constanze Hausteiner-Wiehle, Winfried Häuser, Joram Ronel, Markus Herrmann, Peter Henningsen. Dtsch Arztebl Int 2012; 109(47): 803−13 [PMID 23341111]

Abstract [in English] here:

New guidelines on functional and somatoform disorders

The S3 guideline “Dealing with patients with non-specific, functional and somatoform bodily symptoms” emphasizes the similarities in the management of the manifold manifestations of so called “medically unexplained symptoms” and gives recommendations for a stepped and collaborative diagnostic and therapeutic approach in all subspecialties and all levels of health care. It has a special focus on recommendations regarding attitude, physician-patient-relationship, communication, the parallelization of somatic and psychosocial diagnostics and a stepped therapeutic approach. The “Evidence-based guideline psychotherapy in somatoform disorders and associated syndromes” provides a differentiated analysis of the current evidence regarding the effectiveness of various psychotherapeutic interventions for the most relevant manifestations of functional and somatoform disorders. In combination, both guidelines pose important advances for treatment quality in Germany, but also illustrate remarkable structural and research deficits.

Abstract [in German] here:

Neue Leitlinien zu funktionellen und somatoformen Störungen

Official summary version texts:

English language version:
S3 Clinical Practice Guideline: Non-specific, Functional, and Somatoform Bodily Complaints” (NFS)
or open PDF on Dx Revision Watch:
S3 Non-specific, Functional and Somatoform Bodily Complaints 2013-01

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German language version:

http://www.aerzteblatt.de/archiv/132847
MEDIZIN: Klinische Leitlinie Nicht-spezifische, funktionelle und somatoforme Körperbeschwerden
Clinical Practice Guideline: Non-specific, functional and somatoform bodily complaints
Dtsch Arztebl Int 2012; 109(47): 803-13; DOI: 10.3238/arztebl.2012.0803
or open PDF on Dx Revision Watch:
Nicht-spezifische, funktionelle und somatoforme Körperbeschwerden

Correspondence in response to summary version:

Letter: Iatrogenic Chronification as a Result of Pseudo Diagnosis
Dr. med. Rainer Hakimi, Stuttgart
In Reply:
Dr. med. Rainer Schaefert
Klinik für Allgemeine Innere Medizin und Psychosomatik, Universitätsklinikum Heidelberg

3] New Danish Association for General Practitioners (DSMA) guide for general practice on functional disorders:

Funktionelle lidelser for Almen Praksis

Ny vejledning sætter fokus på funktionelle lidelser Practicus | April 2013

“New guide focuses on functional disorders”

[Article in Danish]

This article introduces the new Danish Association for General Practitioners (DSMA) guide for general practitioners, published this May. The Working Group for the guide, which included Per Fink, was chaired by Marianne Rosendal.

Access document here in PDF [in Danish]:

Funktionelle lidelser Dansk Selskab for Almen Medicin 2013

or open PDF on Dx Revision Watch: Funktionelle lidelser 2013

Related information:
Lene Toscano får 3,3 mio. kr. til formidling af viden om funktionelle lidelser
Lene Toscano gets 3.3 million kr. for dissemination of knowledge about functional disorders
Specialist in General Medicine Lene Toscano, Aarhus University Hospital, has received 3,336,458 kr. from TrygFonden to examine how best to communicate and share knowledge about functional disorders.

Notes:

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

“Bodily distress disorder” (BDD) is being proposed as a new category for ICD-11 to replace a number of existing ICD-10 “Somatoform Disorders.”

An alternative construct, called Bodily stress syndrome (BSS), has been put out for international primary care focus group evaluation by the working group for the revision of ICD-10-PHC (the abridged primary care version of ICD-10), and will be undergoing ICD-11 field testing and analysis. There is no public domain information available on where BSS will be field tested or on field trial study design, patient selection, criteria etc.

Although ICD-11 is at the Beta drafting stage and scheduled for WHA approval in 2015, the public version of the Beta drafting platform has yet to define this proposed new BDD category, characterize its three, proposed severities: Mild; Moderate; Severe, or populate any of its “Content Model” parameters.

It has sat there since February 2012, a tabula rasa.

At the time of writing, it remains unspecified which disorders BDD is proposed to capture.

It isn’t clear whether its criteria are proposed to be based on unspecified somatic symptoms, symptom counts or specific constellations of symptoms (eg gastrointestinal, musculoskeletal); whether psychological or behavioural responses are central to its definition; whether it is intended to be inclusive of selected of the so-called “functional somatic syndromes”; whether, like DSM-5’s SSD, its reach would be extended to include patients with somatic symptoms in association with diagnosed diseases, such as cancer or diabetes.

It is not possible to determine from what little information displays in the public version of the drafting platform whether ICD-11 proposes that BDD would mirror or incorporate Per Fink’s construct of “Bodily Distress Syndrome” for definition, criteria, severity specifiers, inclusions, exclusions etc; or whether it intends BDD to also incorporate DSM-5’s “Somatic Symptom Disorder” (and if so, how might this be achieved, since BDS and SSD lack congruency); or whether a unique definition for BDD is being developed and tested specifically for ICD-11.

Until ICD-11 defines BDD, it presents barriers to professional and lay stakeholders inputting meaningful comment on this proposal, which has remained undefined for over a year.

If the working groups advising ICD-11 Revision are putting forward a Per Fink “BDS” model for BDD, or an adaptation of Per Fink’s model, it is not known how WHO classification experts view any proposal that might seek to shift several, discrete, ICD-10 categories with long-standing classification locations outside the Mental and behavioural disorders chapter of ICD, into Chapter 5, and subsume them under a new disorder construct, for which there is no body of evidence for its validity as a construct and safety of application outside research settings.

Note that the ICD-11 Beta draft is a work in progress: proposals for new disorders for ICD-11 are subject to field trial evaluation and approval by Topic Advisory Group Managing Editors, the ICD-11 Revision Steering Group and WHO classification experts.

These two papers and a book chapter discuss emerging proposals for ICD-11 and ICD-11-PHC:

Lam TP, Goldberg DP, Dowell AC, Fortes S, Mbatia JK, Minhas FA, Klinkman MS. Proposed new diagnoses of anxious depression and bodily stress syndrome in ICD-11-PHC: an international focus group study. Fam Pract 2012 [PMID: 22843638]*
Creed F, Gureje O. Emerging themes in the revision of the classification of somatoform disorders. Int Rev Psychiatry 2012;24:556-67. [PMID: 23244611]
Goldberg DP. Comparison Between ICD and DSM Diagnostic Systems for Mental Disorders. In: Sorel E, (Ed.) 21st Century Global Mental Health. Jones & Bartlett Learning, 2012: 37-53 [Free PDF, Sample Chapter Two: http://samples.jbpub.com/9781449627874/Chapter2.pdf]
*SHORT REPORT Kuruvilla, A, Jacob KS. Perceptions about anxiety, depression and somatization in general medical settings: A qualitative study. National Medical Journal of India, vol. 25, no. 6, pp. 332–335, 2012

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What is “Bodily Distress Syndrome”?

The Per Fink et al construct of BDS is a unifying diagnosis that encompasses a group of what are considered to be closely related conditions such as somatization disorder, fibromyalgia, chronic pain disorder, irritable bowel syndrome, chronic fatigue syndrome and ME, multiple chemical sensitivity (MCS) and whiplash associated disorder. On some BDS presentation slides, “Stress and burn out…and many more…” are added to the list.

From the Aarhus Research Clinic website:

“…recent research suggests that the different diagnoses are all subcategories of one single illness, namely BDS…

“…BDS is a new research diagnosis and therefore unfamiliar to many doctors. Most doctors do know the different diagnoses mentioned in the above box, but they are unaware that they can be viewed as one single illness…”

In May 2010, Per Fink and Andreas Schröder, PhD, MD, Aarhus Universitetshospital, Denmark, published the paper, “One single diagnosis, bodily distress syndrome, succeeded to capture 10 diagnostic categories of functional somatic syndromes and somatoform disorders.” [Abstract: PMID: 20403500].

According to the authors of this 2012 EACLPP Conference Abstract: Bodily Distress Syndrome: A new diagnosis for functional disorders in primary care, the concept of “Bodily Distress Syndrome”

is expected to be integrated into the upcoming versions of classification systems.

This 2010 Danish journal article sets out proposals by Fink et al for a new classification:

Journal article: Fink P, Rosendal, M et al. Ny fælles diagnose for de funktionelle sygdomme. [PDF, in Danish]

Note: This proposal by Fink, Rosendal et al has three hitherto discrete ICD-10 classifications, Fibromyalgia (M79.7), IBS (K58) and Chronic Fatigue Syndrome (indexed to G93.3 in ICD-10; classified in ICD-11 Beta draft as an ICD Title term within ICD-11 Chapter 6: Diseases of the nervous system) proposed to be relocated under the ICD-11 mental and behavioural disorders chapter (Chapter 5) and subsumed under a single new disorder classification, “Bodily Distress Syndrome,” along with Neurasthenia (F48.0), Hypochondriasis and some other ICD-10/DSM-IV Somatoform Disorders.

Page 1837

Proposed new classification on left;  Current classifications on right:

Danish Journal paper Fink P

Here, the same proposal set out in English, from a Danish presentation:

(Note: MS type = Musculoskeletal)

Slide Presentation Two [PDF, in Danish; some slides in English]

Bodily Distress Syndrome (BDS), og helbredsangst  Udvikling af diagnoserne, assessment og forskning på området, Oplæg ved Sundhedspsykologisk, Årsmøde 2011

Slide #11 of 97

Fink: Proposed New Classification

For further information on proposals for “Bodily Distress Disorder” for ICD-11 and on Per Fink’s “Bodily Distress Syndrome” see Dx Revision Watch post #222: ICD-11 Beta draft and Bodily Distress Disorders; Per Fink and Bodily Distress Syndrome Parts One and Two

References

1. Medically Unexplained Symptoms, Somatisation and Bodily Distress: Developing Better Clinical Services. Creed, Francis; Henningsen, Peter; Fink, Per, Cambridge University Press, 2011. Sample pages on Google Books
2. Creed F, Gureje O. Emerging themes in the revision of the classification of somatoform disorders. Int Rev Psychiatry 2012;24:556-67. [Abstract: PMID: 23244611]
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. [Abstract: PMID: 20403500]
4. ICD-11 Beta drafting platform: Bodily Distress Disorder: Mild; Moderate; Severe. Proposed revision to ICD-10 Somatoform Disorders

Menneskerettighederne nægtet: Noget råddent i staten Danmark: Karina Hansen: Opdater 1

Post #258 Shortlink: http://wp.me/pKrrB-36e

Clarification

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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”Har ME-patienter ikke ret til at vælge, hvilken behandling vi ønsker at modtage? Har vi ikke ret til besøgende, når vi er på hospitalet?”

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Karina HansenOpdater 1: Menneskerettighederne nægtet

On May 11, on the eve of ME Awareness week, I published an account, of the plight of the Hansen family, in Denmark.

Karina Hansen is 24. She has been bedridden with severe ME since 2009.

In February, this year, Karina was forcibly removed from her bedroom and committed to Hammel Neurocenter.

Her parents have not seen Karina for over three months.

The Hansen family and their lawyer are still waiting for legal documentation and answers to their questions:

Which authority gave the order to remove Karina from her home against her will and by whom was it authorized?

What legislation was used to detain her as an involuntary patient in a hospital?

Why are the parents being denied visits?

Two updates on the case have been released, this week. These are being published, as provided, and with permission of the Hansen family and their lawyer.

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Første rapport:
Noget råddent i staten Danmark: Karina Hansen: http://wp.me/pKrrB-2Xc

Verdenserklæringen om Menneskerettighederne: http://www.unric.org/da/information-om-fn/15

Status på Karinas sag – 24.5.13

Af Rebecca Hansen

Følgende tekst er godkendt af familien.

Karina er forsat indlagt på Hammel Neurocenter. Lægen Jens Gyring har givet mundtlig besked til familien om, at indlæggelsen vil forsætte i lang tid – måske et år. Vi har ikke set noget bevis for, at Karina har fået det bedre.

Karinas forældre har en fuldmagt, som giver dem ret til at træffe beslutninger for Karina, også omkring hendes behandling. Denne fuldmagt ignoreres.

Fuldmagten blev oprettet i maj 2012. Karinas praktiserende læge erklærede hende psykisk rask 2 gange i maj 2012.

Sundhedsstyrelsen (SST) påstår, at Karinas advokat ikke er hendes advokat, da de nu mener, at hun ikke var habil, da hun antog advokaten i maj 2012. Advokaten har repræsenteret Karina siden maj 2012 og fik aktindsigt i Karinas sag på dette grundlag. Dernæst oplyser SST, at advokaten havde fuldmagt i 2012 ved første mislykkede forsøg på at få Karina tvangsindlagt (03.05.12) men at fuldmagten ikke er gældende for episoden med hendes endelige tvangsfjernelse og indlæggelse i februar 2013.

Psykiater Nils Balle Christensen skriver, at Karina er voksen og myndig til at træffe ”her og nu beslutninger”, og at de på Hammel Neurocenter ikke gør noget imod hendes vilje. Men samtidig, mener Holstebro Kommune at Karina har brug for en værge og Statsforfatningen Midtjylland har fået til opgave at udpege en værge til hende og hermed umyndiggøre hende.

ME Foreningen kontaktede Patientkontoret den 29. april 2013 for at få navn på Karinas patientrådgiver, idet Foreningen ønsker at bidrage med viden om sygdommen og vil herudover forsøge at skaffe en udenlandsk ME ekspert til landet, der kan tilse Karina. Svaret var at ”sagen er overgivet til Juridisk kontor i Region Midtjylland.”

Karinas forældre og jeg prøvede at besøge Karina den 12. maj, men blev nægtet adgang. Du kan læse om dette på ME Foreningens facebook under noter.

Nils Balle Christensen skriver, at der ikke er besøgsforbud, men Karinas forældre må alligevel fortsat ikke besøge hende. Der gives en mundlig besked til forældrene, at ”juristerne” vil oprette et ”dokument” omkring ”besøgsrestriktionerne”. Denne kan Karinas forældre forvente at få fremsendt i løbet af 7-14 dage.

Vi har ringet til Karinas mobil som hun har med på hospitalet mange gange, men den går direkte på voicemail.

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Et besøg hos Karina – et spørgsmål om menneskerettigheder

Af Rebecca Hansen
ME-patient
icerebel62@hotmail.com

Den 12. maj besluttede Karinas forældre og jeg igen at prøve at besøge Karina på Hammel Neurocenter. Karina er en alvorligt syg dansk ME-patient, som er blevet tilbageholdt på Hammel Neurocenter siden den 12. februar 2013, og i denne periode har hendes forældre ikke fået lov til at besøge eller tale med hende.

Karinas advokat har for nylig fået en meget begrænset adgang til nogle af dokumenterne i Karinas sag ved hjælp af offentlig aktindsigt. Af dette materiale fremgik det, at det faktisk ikke er tilladt i Danmark at forhindre pårørende i at besøge deres familie på hospitalet, og at menneskerettighederne har høj prioritet.

Karina forældre var blevet fortalt, at de skulle mødes med Nils Balle Christensen (NBC), en psykiater fra Forskningsklinikken for Funktionelle Lidelser, for at tale om betingelserne for besøg, før de kunne se deres datter. Da Karinas søster, Janni, besøgte Karina i april, fik Janni instruktioner om, hvad hun måtte sige og ikke sige til Karina. Forældrene fik slet ikke lov at komme ind, fordi de fik at vide, at de først skulle mødes med NBC for at afgøre betingelserne for besøg.

Men nu vidste vi, at det ikke er legalt at have sådanne restriktioner på besøg, så vi besluttede at prøve at se Karina søndag den 12. maj – på Mors Dag og den internationale mærkedag for ME.

Før jeg fortæller om besøget, vil jeg fortælle om den kontakt, som NBC har haft med Karina og hendes familie.

Nils Balle Christensen blev involveret i Karinas sag i maj 2012, efter Karinas advokat havde forhindret hendes fjernelse efter psykiatrisk lovgivning. Han blev præsenteret for familien, og hans opgave var at udarbejde en behandlingsplan til Karina. I løbet af sommeren 2012 besøgte NBC Karinas forældre adskillige gange med henblik på at etablere en behandlingsplan. I denne periode ønskede NBC ikke at samarbejde med Karinas advokat, og NBC leverede ikke en skriftlig behandlingsplan. Karinas forældre har aldrig modtaget nogen skriftlige instrukser for Karinas pleje og der var ingen kritik af den pleje, de gav Karina. Jeg var til et møde med NBC og Karinas forældre i 2012, hvor NBC fortalte moderen, at hun gjorde et godt stykke arbejde. NBC kom med et tilbud om at indlægge Karina, men ikke med en plan om hvad der ville ske, når hun blev indlagt. De fik heller ikke nogen forklaring på, hvorfor man ikke kunne behandle Karina i hjemmet. Karinas forældre turde ikke acceptere en ukendt behandling fra en læge, der aldrig før har behandlet (eller set) en alvorlig syg ME-patient. Af mange årsager stolede Karinas forældre ikke på NBC, og kontakten med NBC blev afbrudt i starten af efteråret 2012. Karinas forældre valgte at betale for en privat læge og en diætist til at hjælpe Karina.

Karinas forældre troede, at NBCs involvering med Karina nu var afsluttet. Men den begrænsede adgang, som Karinas advokat nu har opnået ved offentlig aktindsigt afslører, at NBCs engagement langt fra var overstået.

Dokumenterne viser, at der var aktivitet i Karinas sag imellem Sundhedsstyrelsen og henholdsvis Holstebro Kommune, Holstebro politi samt til NBC, efter at hans kontakt til forældrene var stoppet.

Desuden afslører disse papirer, at der var en forespørgsel til Ministeriet for Sundhed og Forebyggelse om retten til at forhindre pårørende i at besøge familiemedlemmer på et hospital. Den 21. december 2012 sendte ministersekretæren for Ministeriet for Sundhed og Forebyggelse et 5-siders svar, der forklarer, at menneskerettighederne har høj prioritet (vejer meget tungt).

Men i NBCs skrivelse af 12. februar 2013 til Karinas forældre står der:

”Det er besluttet, at Karina, pga. sin tilstand, ikke må have besøg de første 14 dage. Det vil herefter blive vurderet, om hun er i stand til at modtage besøg.”

Med disse nye oplysninger om menneskerettighederne i hånden, besluttede Karinas forældre og jeg os den 12. maj for at se, om der stadig var et forbud imod eller begrænsninger på at besøge Karina på Hammel Neurocenter.

Vi ønskede ikke, at personalet skulle føle sig truet af os på nogen måde, så vi havde på forhånd aftalt, at hvis vi fik at vide, vi ikke kunne besøge Karina, ville vi respektere dette, men vi ville stille en masse spørgsmål om, hvorfor dette forbud / denne begrænsning var oprettet.

På Hammel præsenterede Karinas forældre sig for personalet og bad om tilladelse til at se deres datter. Der blev svaret ”nej”, og at det skulle have været aftalt telefonisk med lægen. Jeg spurgte, om der var et besøgsforbud. Det blev der svaret ”nej” til. Så spurgte jeg, om der var restriktioner, men det blev ikke besvaret. I stedet svarede medarbejderen, at hun ville ringe til Jens Gyring, som er overlægen på stedet. De bad os om at vente. Medarbejderne på Hammel Neurocenter var høflige og venlige, men det var tydeligt, at de var beklemte ved vores tilstedeværelse.

Et øjeblik senere vendte sygeplejersken tilbage med svar fra Jens Gyring, at forældrene først skulle have et møde med NBC, inden de kunne se deres datter. Vi diskuterede denne begrænsning, og Karinas forældre bad om en skriftlig forklaring på, hvorfor de skulle have et møde med NBC, før de kunne se deres datter, og hvad hensigten med mødet ville være.

Jeg understregede, at det ikke er lovligt at forhindre forældre i at besøge sit barn og prøvede at vise dem udtalelsen fra Ministeriet for Sundhed og Forebyggelse. En anden medarbejder brød ind og sagde, at denne diskussion skulle tages med lægerne og ikke med dem.

I mellemtiden var Jens Gyring blevet kontaktet igen og havde sagt, at man skulle spørge Karina om hun vil have besøg. En ny sygeplejerske deltog i vores diskussion og sagde: ”Jeg har lige været inde ved Karina og fortalt, at I er her og spurgt om hun vil have besøg, og hun rystede bare på hovedet.”

Meget interessant, at der pludselig ikke var noget besøgsforbud, men at det nu var op til Karina…

Til det svarede jeg, at vi gerne ville have en hel sætning fra Karina for at sikre, at hun forstod spørgsmålet. Vi ønskede at høre hende sige, at hun ikke ville se sin mor og far. Vi kunne ikke rigtig vide, om hun forstod spørgsmålet, eller om hun virkelig troede på, at de var her efter 3 måneder. Desuden bærer Karina normalt ørepropper, så måske hørte hun ikke engang spørgsmålet.

Karinas mor sagde, at hun gerne vil høre ordene fra Karinas egen mund. At hun gerne ville se Karina og høre hendes svar. Og hvis Karina bad hende om at gå, ville hun straks gå igen.

Personalet insisterede på, at Karina havde svaret.

Her skal man huske på, at det sidste Karina sagde til sin mor den 13. februar var, da hun ringede til sin mor og sagde: ”Hvordan kommer jeg ud herfra. Jeg kan ikke klare det.” – Hvad er der sket de sidste 3 måneder? Ønsker Karina virkelig ikke at se sine forældre? Hvis dette er tilfældet, hvad er så årsagen? Hvilken begrundelse har lægerne givet Karina for, at forældrene ikke besøger hende? Vi er overladt til at gætte svarene på disse spørgsmål.

Det var tydeligt, at forældrene ikke ville få lov til at se Karina og selv høre, at Karina ikke ønskede et besøg. Men vi fik de ansatte til at love at få NBC til at sende forældrene en skriftlig erklæring om, hvorfor de skulle have et møde med ham, før de kunne se deres datter, og hvad mødet ville handle om. De lovede også at oplade Karinas mobiltelefon og give den til hende. Så forlod vi Neurocenteret. Karinas mor havde tårer i øjnene og sagde: ”Jeg troede virkelig, at jeg ville få hende at se i dag.”

Efter hjemkomsten skrev Karinas forældre en mail til Nils Balle Christensen og bad igen om på skrift at få at vide, hvorfor de ikke må se Karina, og hvad dagsordenen er for det møde, han kræver, før de kan se hende.

Til dette svarede NBC, at der ikke er besøgsforbud. Og siden Karinas forældre ikke ønsker at mødes med NBC, kan de i stedet mødes med overlæge Jens Gyring: ”hvor der kan laves skriftlige aftaler om fremtidige besøg og telefonkontakt med mere”.

Er det ikke stadig et besøgsforbud, indtil deres betingelser er opfyldt? Hvordan er det forskelligt fra et besøgsforbud, indtil forældrene mødes med NBC? Hvilken ret har de til at stille disse betingelser?

Få dage senere fik Karinas forældre at vide af Jens Gyring, at det ville være op til advokaterne at lave en skriftlig aftale om besøg. Dette kunne tage 2 uger.

I mellemtiden kan vi tænke over, hvad denne situation betyder for andre ME-patienter og deres pårørende i Danmark. En alvorligt syg ME-patient får tilkendt en psykiater, som aldrig før har behandlet en alvorligt syg ME-patient. Psykiateren kommer fra en klinik, der har fravalgt at samarbejde med internationale ME eksperter (brev fra september 2012 og referat fra mødet den 8. oktober 2012). Psykiateren ønsker ikke at samarbejde med patientens advokat eller oplyse noget på skrift om den behandling, han vil give.

Når ME-patienten og de pårørende beslutter, at de ikke ønsker den behandling, som denne psykiater tilbyder, så samarbejder de danske myndigheder for at fjerne ME-patienten fra hjemmet – tydeligt imod hendes vilje – og isolere hende fra hendes pårørende og advokat.

Psykiateren, der har ansvaret for Karina, er også ansvarlig for alle ME-patienter i Danmark – så er det fremtiden for alle ME-patienter og deres familier i Danmark?

Har ME-patienter ikke ret til at vælge, hvilken behandling vi ønsker at modtage? Har vi ikke ret til besøgende, når vi er på hospitalet?

Ja, der er virkelig noget råddent i Danmarks rige.

Hvis jeg har misforstået noget i denne historie, så vil jeg være glad for at høre en forklaring fra de involverede parter.

Rebecca Hansen
ME-patient
Icerebel62@hotmail.com

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For first report (in English) see:

Something rotten in the state of Denmark: Karina Hansen’s story: http://wp.me/pKrrB-2Xc

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
Menneskerettighederne nægtet: Noget råddent i staten Danmark: Karina Hansen: Opdater 1: http://wp.me/pKrrB-36e
Human Rights denied: Something rotten in the state of Denmark: Karina Hansen’s story: Update 1: http://wp.me/pKrrB-35o
Ontkenning van mensenrechten: Iets verrot in de staat van Denemarken: Het verhaal van Karina Hansen: Update 1: http://wp.me/pKrrB-35o
Menschenrechtsverstoß: Etwas ist faul in Dänemark: Karina Hansens Geschichte: Update 1: http://wp.me/pKrrB-35o
Droits de l’Homme: Il y a quelque chose de pourri au royaume du Danemark: l’histoire de Karina Hansen: Update 1: http://wp.me/pKrrB-35o
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