The Elephant in the Room Series Two: More on MUPS

Elephant70

Image | belgianchocolate | Creative Commons

Keywords

APA    DSM    DSM-IV    DSM-V    WHO    ICD    ICD-10    ICD-11    American Psychiatric Association    Diagnostic and Statistical Manual of Mental Disorders    World Health Organization    Classifications    DSM Revision Process    DSM-V Task Force    DSM-V Somatic Distress Disorders Work Group    Somatic Symptom Disorders Work Group    DSM-ICD Harmonization Coordination Group    International Advisory Group    Revision of ICD Mental and Behavioural Disorders    Global Scientific Partnership Coordination Group    ICD Update and Revision Platform    WHO Collaborating Centre    CISSD Project    MUPSS Project    Somatoform    Somatisation    Somatization    Functional Somatic Syndromes    FSS    MUS    Myalgic encephalomyelitis    ME    Chronic fatigue syndrome    CFS    Fibromyalgia    FM    IBS    CS    CI    GWS

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The Elephant in the Room Series Two:

More on MUPS

In April, I reported that Dr Richard Sykes (International CISSD Project) is now a “Visiting Research Associate” of the WHO Collaborating Centre, Institute of Psychiatry, King’s College London.

Since 2008, Dr Sykes has been engaged on the “London Medically Unexplained Physical Symptoms and Syndromes (MUPSS) Project” for which he receives a research award of £27,000 per year through the Institute of Psychiatry. The aims and objectives of this MUPSS Project and through what means these are to be achieved have yet to be established. But it is understood that a paper or papers may result out of the MUPSS Project which, according to Dr Sykes, will have relevance to “all conditions characterised by medically unexplained symptoms, not just CFS/ME”.

I’d like to draw attention to a collation of “MUPS” related documents:

[Note the use and juxtaposition of “chronic fatigue” with “bed-bound” and then the later use of (and statement in relation to) “chronic fatigue syndrome” in the first of these three NHS Commissioning documents. In the UK, we continue to see examples within NHS service provision and in liaison psychiatry and psychosomatics journal papers (many of which will be feeding into the DSM-V revision process) of the indiscriminate use of the terms “fatigue”, “chronic fatigue”, “chronic fatigue syndrome”, “CFS/ME” and “MUPS” .]

1] Three NHS (UK National Health Service) Commissioning related documents:

http://www.iapt.nhs.uk/wp-content/uploads/2008/11/medically-unexplained-symptoms-positive-practice-guidetxt.pdf

or open here:  NHS MUPS Positive Practice Guide

Improving Access to Psychological Therapies (Commissioning)

Medically unexplained symptoms positive practice guide  October 2008

“Relieving distress, transforming lives”

“Medically unexplained physical symptoms (MUPS) are physical symptoms that have no currently known physical pathological cause. They constitute a clinically, conceptually and emotionally difficult area to tackle, with clinical presentations varying greatly, from people who regularly attend GP surgeries with minor symptoms to people with chronic fatigue who are bed-bound.”

[…]

“The vast majority of MUPS, such as pain, irritable bowel syndrome and chronic fatigue syndrome, have no obvious cause and often do not actually require any input from health services.”

[…]

“Many people are willing to accept that depression and/or anxiety disorders are linked to their MUPS as long as they believe that health professionals are willing to keep an open mind about the cause of any further physical symptoms. Therefore, the venue or location of an IAPT service should be considered when looking to break down barriers for individuals who are experiencing MUPS. With many patients believing their symptoms are entirely physical problems, a service that is located or embedded in a physical health framework may encourage engagement, i.e. within a pain clinic, part of a Clinical Assessment Service or Intermediate Clinical Assessment Team for musculoskeletal problems.”

Healthcare for London (Commissioning)

Medically unexplained symptoms

http://www.healthcareforlondon.nhs.uk/assets/Publications/Mental-health/Briefs20-20MUS20v1.0.pdf

or open here:  NHS MUS Healthcare for London

“The proposed medically unexplained symptoms workstream will look at the patients who, after significant diagnostic investigation in physical care services, are not found to solely have a physical cause for their condition, and are considered to have a previously unrecognised mental health component to their condition.”

[…]

Outcomes of the medically unexplained symptoms workstream

· Integrated commissioning of services leading to individualised care and improved social outcomes for patients.

· Early identification and treatment will result in a potentially significant reduction in unnecessary and expensive medical investigations and ineffective treatment.

· Reduction in number of patients with medically unexplained symptoms in outpatient clinics and onward referral to diagnostics, which may have an impact on the 18 weeks target.

http://www.healthcareforlondon.nhs.uk/assets/Publications/Mental-health/Top20of20mindv1.0.pdf

Healthcare for London (Commissioning)

Top Of Mind: Making mental health a capital priority

or open here:  NHS Top of Mind London

“The mental health project will deliver commissioning specifications to primary care trusts (PCTs) providing evidence-based care pathways. It is proposed that these pathways meet the needs of the following three groups of service users:
· people with dementia and their carers;
· people with medically unexplained symptoms;
· people with co-occurring disorders.”

“Workstream one – Medically unexplained symptoms and the physical/mental health interface”

———————-

Here is UK based Rona Moss Morris selling CBT to the US:

2] Video of presentation by Prof Rona Moss Morris to School of Nursing, University of Wisconsin.

http://videos.med.wisc.edu/videoInfo.php?videoid=806

Medically Unexplained Symptoms: Medicine’s Dirty Little Secret

Rona Moss Morris
Professor of Health Psychology, University of Southampton UK

October 2007, 46 minutes

“Rona Moss Morris, PhD, describes her program of research to enhance coping with symptoms for individuals with chronic fatigue syndrome and irritable bowel syndrome using a model of self-regulation and cognitive behavioral therapy.”

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Brace yourselves for this one…

3] PowerPoint presentation

From the website of the EACLPP (European Association for Consultation Liaison Psychiatry and Psychosomatics)

http://www.eaclpp.org/presentations.html

PowerPoint Presentation:

(PowerPoint Reader required):  ttp://www.eaclpp.org/presentations/Turner%20Stokes%20MUS.ppt

or open MS PP file here:  (PowerPoint Reader required):  Turner Stokes MUS  

Medically Unexplained Symptoms: an approach to rehabilitation

Prof Lynne Turner-Stokes, Herbert Dunhill Chair of Rehabilitation, King’s College London

Slide 6:

Establish a different attitude
‘Illness’ can be a social condition
Engenders a caring response
Admiration from peers
‘Isn’t she brave!”
Some who has found a prop
Does not necessarily want it removed
Seek medical attention
For confirmation – not cure
Diagnosis is an end in itself

Slide 26:

Some patients
Require their ‘medical condition’
Part of own strategy for dealing with life
Come to clinic
Not for a ‘cure’
For support and bona fide status
Of ‘being under care of the doctor’
Remove the crutch
They will find another

Slide 27:

Secondary gain
Disability may hold advantages for them
Financial /Environmental
Benefits, equipment, accommodation
Support, care and attention
From family, friends/carers
Excuse for avoidance
E.g of unwanted sexual attentions
Social mystique or importance
Having a ‘rare condition’

———————-

4] The Irish College of Psychiatrists’ Bulletin
Vol 3, Issue 1. May 2008

http://www.irishpsychiatry.ie/pdf/Newsletter%20May%2008.pdf

In which a keynote address of Danish researcher, Per Fink (CISSD Project member) is reported on Page 8:

“[…] His presentation also examined the claims of several of the ‘pseudonym’ somatoform conditions which have been invented by various branches of medicine. He found that there were no differences in the symptoms reported by patients diagnosed with Fibromyalgia; Multiple Chemical Sensitivity; Sick Building Syndrome and Chronic Fatigue Syndrome’ confirming the long-held clinical opinion that these are all the same condition: somatoform disorder. He also suggested a possible new name for the condition; ‘Body Distress Disorder’ which he believes may be more acceptable to patients and GPs.”

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5] European Association for Consultation-Liaison Psychiatry and Psychosomatics (EACLPP) http://www.eaclpp.org/

http://www.eaclpp.org/working_groups.html  and

http://www.eaclpp.org/news.html

News:

Working Groups

Medically Unexplained Symptoms and Somatisation

Patients with medically unexplained symptoms and somatisation – a challenge for European health care systems

A white paper of the EACLPP Medically Unexplained Symptoms study group
by Peter Henningsen and Francis Creed can be downloaded at:

http://www.eaclpp.org/documents/Patientswithmedicallyunexplainedsymptomsandsomatisation.doc

“You can see the first draft of the report following the above link.
It is still “work in progress” and will be revised further.

“If you have any comments or additions to suggest, please email them to Gill
Dunkerley (
Gillian.D.Dunkerley@manchester.ac.uk ) who will pass them on to the
working group.”

Draft document is approx 76 pages long, including tables and charts can also be opened here

EACLPP Working group on MUS version 16 Jan 2009

(Let me know if there are any problems opening this draft report.)

A white paper of the EACLPP Medically Unexplained Symptoms study group

Patients with medically unexplained symptoms and somatisation – a challenge for
European health care systems

Draft – prepared by: Peter Henningsen and Francis Creed January 2009

“The report arises from the EACLPP working group “Improving the management of patients with medically unexplained symptoms/somatisation”. The group is open to all EACLPP members but a core group have been responsible for the fist draft of this report . The core group (listed below) includes (24 – to be revised?) members, who have contributed so far. They represent 9 EU countries (currently – increase?). All have a special interest in the treatment of patients with medically unexplained symptoms; most have a research interest as well as clinical one and all are motivated to see an improvement in the treatment of these patients who are served poorly by most, if not all, health care systems across Europe.”

———————-

NB:

Francis Creed (UK), Peter Henningsen (Germany) and Per Fink (Denmark) are the co-ordinators of this European EACLPP MUS Work Group.

Francis Creed, Peter Henningsen and Per Fink were also members of the International CISSD Project (Co-ordinator: Dr Richard Sykes, Principal Administrators: Action for M.E., now engaged in London MUPSS Project).

Per Fink is a member of the Danish Working Group on Chronic Fatigue Syndrome, established in August 2008 and expected to complete its work in spring 2009.

[I understand that there has been controversy over psychiatrist, Per Fink’s, influence and the choice of treatment and management models. Perhaps a Danish advocate could provide readers with an update on the progress of this Danish CFS Working Group?]

Prof Creed is a member of the board of the EACLPP which is administered out of University of Manchester. The official journal of the EACLPP is the Journal of Psychosomatic Research, which is co-edited by Prof Creed.

Prof Creed and Prof Michael Sharpe are the UK members of the APA’s DSM-V “Somatic Distress Disorders” Work Group. Prof Michael Sharpe was also a member of the CISSD Project and served as the Project’s UK Chair.

The April 2009 report of the APA DSM-V Somatic Distress Disorders Work Group by Joel Dimsdale, M.D. (DSM-V Work Group Chair) can be read on the APA’s site here:

http://tinyurl.com/DSMSDDWGApril09

An Editorial by Francis Creed and Joel Dimsdale entitled:

The proposed diagnosis of Somatic Symptom disorders in DSM-V to replace Somatoform disorders in DSM-IV – A preliminary report”

(an expansion of the brief report of the April 09 DSM-V Somatic Distress Disorders Work Group) will be published in the June edition of the Journal of Psychosomatic Research and is currently available online as “In Press” for subscribers.

DSM-V is anticipated to be finalised in May 2012, with a draft expected in 2009. DSM-V is to be “harmonized” for congruency with the chapter on Mental and behavioural disorders in ICD-11 (currently Chapter V in ICD-10).

And why aren’t our patient orgs monitoring and scrutinising these processes?

A DSM-V and ICD-11 Directory and previous reports in this series can be accessed at: http://tinyurl.com/dsm-vdirectory 

18 May 2009

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