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

June 19, 2013 by

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

Filed under Bodily Distress Disorders, Bodily distress syndrome, Bodily stress syndrome, Chronic fatigue syndrome, Functional Somatic Syndrome (FSS), ICD-11 Beta Draft, MUS, Myalgic Encephalomyelitis (ME), Per Fink, Somatic Symptom Disorder Tagged with , , , , , , , , ,

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

June 19, 2013 by

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

Filed under Bodily Distress Disorders, Bodily distress syndrome, Bodily stress syndrome, Chronic fatigue syndrome, Functional Somatic Syndrome (FSS), ICD-11 Beta Draft, MUS, Myalgic Encephalomyelitis (ME), Per Fink, Somatic Symptom Disorder Tagged with , , , , , , , , ,

Update on ICD-11 Beta drafting: Bodily Distress Disorder: emerging proposals: Part One

June 15, 2013 by

Post #265 Shortlink: http://wp.me/pKrrB-3cr

Update on ICD-11 Beta drafting: Bodily Distress Disorder: emerging proposals: Part One

This report should be read in conjunction with the caveats at the end of the post, on Page 3.

Part One

The technical work associated with the preparation of ICD-11, the field testing and trials evaluation will need to be completed next year if WHO is going to meet its target of presenting ICD-11 for World Health Assembly approval in May 2015, with pilot implementation by 2016.

Three distinct versions of the ICD-11 classification of Mental and Behavioural Disorders are under development: an abridged version for use in primary care, a detailed version for use in specialty settings and a version for use in research.

The ICD-10 Somatoform Disorders are under revision for all three versions and the primary care and speciality versions are being developed simultaneously.

ICD10-PC, the abridged version of ICD, is used in developed and developing countries and in the training of medical officers, nurses and multi-purpose health workers. Globally, more than 90% of patients with mental health problems are managed by practitioners or health workers in general medical or primary care settings – not by psychiatrists.

Over 400 mental disorders are classified in the speciality version of ICD-10 Chapter V. These are condensed to 26 mental disorders for the primary care version – a list can be found on Page 49 of this book chapter, in Table 2.4.

Each disorder in ICD10-PC provides information on patient presentation, clinical descriptions, differential diagnoses, treatments, indications for referrals and information sheets for patients and families.

A revised list of disorders proposed for inclusion in the forthcoming ICD-11-PHC can be viewed on Page 51, in Table 2.5 [1].

For new and revised disorders included in the primary care version there will need to be an equivalent disorder in the core ICD-11 classification.

Existing Somatoform Disorders in the core ICD-10 version can be viewed here: ICD-10 Version: 2010 browser: Somatoform Disorders or from Page 129 in The ICD-10 Classification of Mental and Behavioural Disorders, Clinical descriptions and diagnostic guidelines.

A chart showing the grouping of the detailed core version categories and the 26 corresponding disorders in ICD10-PC can be found here, see Page 8, for F45 Unexplained somatic complaints and F45  Somatoform disorders (ICD-10): Connections between ICD-10 PC and ICD-10 Chapter V.

Where reports of emerging proposals for ICD-11 have been published by ICD revision working group members, the recommendations within them may be subject to refinement or revision following analysis of focus group studies, external review and multicentre field trials to assess the validity and clinical utility of proposals for application in developed and developing countries, in high and low resource settings and across general, speciality and research settings [2].

Not all proposals for new or revised disorders are expected to survive the field trials.

Two working groups are making recommendations for the revision of ICD-10’s Somatoform Disorders:

A WHO Primary Care Consultation Group (known as the PCCG) has been appointed to lead the development of the revision of ICD10-PC, the abridged classification of mental and behavioural disorders for use in primary care settings. The PCCG is charged with developing and field testing the full set of disorders for inclusion in ICD-11-PHC, for which 28 mental disorders are currently proposed.

The PCCG members are SWC Chan, AC Dowell, S Fortes, L Gask, KS Jacob, M Klinkman (Vice Chair), TP Lam, JK Mbatia, FA Minhas, G Reed, and M Rosendal. The PCCG is chaired by Prof, Sir David Goldberg.

A WHO Expert Working Group on Somatic Distress and Dissociative Disorders (known as the S3DWG) was constituted in 2011 to review the scientific evidence for, and clinical utility of the ICD-10 somatoform and dissociative disorders; to review proposals for the DSM-5 somatic symptom disorders and dissociative disorders categories and to consider their suitability or not for global applications; to review proposals and provide draft content for the somatic distress and dissociative disorder categories in line with the overall ICD revision requirements; to propose entities and descriptions for the classification of somatic distress and dissociative disorders for use in diverse global and primary care settings. External reviewers are also consulted on proposals and content.

The full S3DWG membership list is not publicly available but the group is understood to comprise 17 international behavioural health professionals, of which Prof Francis Creed is a member. The S3DWG is Chaired by Prof Oye Gureje.

Responsibilities of ICD-11 working groups are set out on Page 3 (1.1.) of document [3] in the References. Document [3] also includes information on the ICD-11 field trials, from Page 8 (4.).

1. 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
2. PDF WHO ICD Revision Information Note, Field Testing, June 2012
3. Responsibilities of ICD-11 working groups set out on Page 3 of 2012 Annual Report of the International Union of Psychological Science to the American Psychological Association, Revision of World Health Organization’s ICD-10 Mental and Behavioural Disorders, Pierre L.-J. Ritchie, Ph.D., Main Representative to the World Health Organization, International Union of Psychological Science, January, 2013

Continued on Page 2

Filed under Bodily Distress Disorders, Bodily distress syndrome, Bodily stress syndrome, Chronic fatigue syndrome, ICD-11, ICD-11 Beta Draft, MUS, Per Fink, Somatic Symptom Disorder, Somatoform Disorders Tagged with , , , , , , , , ,

Bodily Distress Syndrome: Coming soon to a GP Management Pilot near you…

June 14, 2013 by

Post #264 Shortlink: http://wp.me/pKrrB-3dG

NHS England: Pilot of Enhanced GP Management of Patients with Medically Unexplained Symptoms

NHS Barnet Clinical Commissioning Group

Pilot of Enhanced GP Management of Patients with Medically Unexplained Symptoms
Open full size PDF:

Click link for PDF document  Pilot of Enhanced GP Management of Patients with MUS

or download here:

http://tinyurl.com/k44xg7d

Note the use of the term “Bodily Distress Syndrome (BDS)” despite the lack of a body of evidence to support the validity, reliability, safety and clinical utility of the application of the BSD construct* in primary care.

Note also, the list of illnesses under the definition of “MUS”: Chronic Pain, Fibromyalgia, Somatic Anxiety/Depression, Irritable Bowel Syndrome (IBS), Chronic Fatigue Syndrome (CFS), Myalgic Encephalomyelitis (ME), Post-viral Fatigue Syndrome.

*For information on the Fink et al concept of “Bodily Distress Syndrome” see Part Two of Dx Revision Watch Post: ICD-11 Beta draft and BDD, Per Fink and Bodily Distress Syndrome

Extracts:

22 May 2013

NHS England

PILOT OF ENHANCED GP MANAGEMENT OF PATIENTS WITH MEDICALLY UNEXPLAINED SYMPTOMS

NHS Barnet Clinical Commissioning Group

Background

Medically Unexplained Symptoms

Definition

The term ‘medically unexplained symptoms (MUS)’ are physical symptoms that cannot be explained by organic pathology, which distress or impair the functioning of the patient. Patients often present with physical symptoms that cannot be explained even after thorough investigation. Other terms used to describe this patient group include: Functional Somatic Syndrome (FSS), Illness Distress Symptoms (IDS), Idiopathic Physical Symptoms (IPS), Bodily Distress Syndrome (BDS) and Medically Unexplained Physical Symptoms (MUPS).

Symptoms and Diagnosis

Symptoms

Headache
Shortness of Breath, palpitations
Fatigue, weakness, dizziness
Pain in the back, muscles, joints, extremity pain, chest pain, numbness
Stomach problems, loose bowels, gas/bloating, constipation, abdominal pain
Sleep disturbance, difficulty concentrating, restlessness, slow thoughts
Loss of appetite, nausea, lump in throat
Weight change

Diagnosis

Chronic Pain
Fibromyalgia
Somatic Anxiety/Depression
Irritable Bowel Syndrome
Chronic Fatigue Syndrome
Myalgic Encephalomyelitis
Post-viral Fatigue Syndrome

PROJECT AIMS AND OBJECTIVES

• To pilot a commissioner initiated, enhanced GP management service for patients with MUS in primary care. Refer to Figure 1 for details.

• The pilot will be carried out at selected Barnet GP practices (approximately 15) managing a minimum of 10 patients with MUS over 12 months.

• To identify patients with MUS using an electronic risk stratification tool the ‘Nottingham Tool’ with a review of the generated list at a multidisciplinary (MDT) GP practice meeting for the final patient selection.

• To enhance post-graduate GP training by providing education and training workshops and focused work group meetings on the management of MUS.

• The project will also test the assertion that identification and management of MUS would result in savings to commissioning budgets.

PROJECT OUTCOMES AND BENEFITS

There are several benefits that could be realised from implementing this project. These are as follows:-

• Improved outcomes for patients with MUS, better patient experience

• Improved quality of life

• Improved GP-Patient relationship

• Reduced GP secondary and tertiary referrals

• Reduced unnecessary GP and hospital investigations and prescribing of medicines

• Reduced GP appointments and out of hours appointments to A&E or GP

CONCLUSIONS

There is a high prevalence of patients with medically unexplained symptoms presenting to primary and secondary care services. Patients with MUS are high healthcare service users having a major impact to our local health economy and health outcomes. GPs are well placed to manage MUS patients as this patient group are 50% more likely to attend primary care. We believe that our proposed enhanced management of care by the GP will result in both market and non-market benefits. This proposal has gained approval from the NHS Barnet CCG Primary Care Strategy and Implementation Board, QIPP Board and the NCL Programme Board for the 2013/14 financial year…

etc.

Related material

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IAPT NHS Long Term Conditions and Medically Unexplained Symptoms

IAPT NHS Medically Unexplained Symptoms

PHQ-15

The “Nottingham Tool”

Click link for PDF document   Medically Unexplained Symptoms (MUS): A Whole Systems Approach in Plymouth

In partnership with:

Plymouth Hospitals NHS Trust, Sentinel Healthcare Southwest CIC, Southwest Development Centre, September 2009

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Click link for PDF document   Medically Unexplained Symptoms (MUS) A whole systems approach
NHS Commissioning Support for London
July 2009 – December 2010

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Filed under Bodily distress syndrome, Chronic fatigue syndrome, Functional Somatic Syndrome (FSS), ICD-11 Beta Draft, MUS, Myalgic Encephalomyelitis (ME), Per Fink, Postviral fatigue syndrome, Psychiatry, Somatoform Disorders Tagged with , , , , , , , , ,

Karina Hansen initiatives: A clarification

May 30, 2013 by

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

Filed under Bodily Distress Disorders, Bodily distress syndrome, Bodily stress syndrome, Chronic fatigue syndrome, Functional Somatic Syndrome (FSS), ICD-11 Beta Draft, MUS, Myalgic Encephalomyelitis (ME), Per Fink, Somatic Symptom Disorder Tagged with , , , , , , , , ,

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

May 27, 2013 by

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

Filed under Bodily Distress Disorders, Bodily distress syndrome, Bodily stress syndrome, Chronic fatigue syndrome, Functional Somatic Syndrome (FSS), ICD-11 Beta Draft, MUS, Myalgic Encephalomyelitis (ME), Per Fink, Somatic Symptom Disorder Tagged with , , , , , , , , ,

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