CFSME: Can a Phenomenological Approach help

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CFS/ME Can a Phenomenological Approach help?

• Dr Andrew McGettigan
• Central Saint Martins College of Art Design

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CFS/ME Overview

• Definition Diagnosis
• Alternative History
• Philosophical Issues
• Patient Experience
• Phenomenology Cognitive Behaviour Therapy
• Conclusions Questions

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Concepts of Illness

• CFS/ME case study with particular problem as
  complex and heterogeneous chronic illness
• At issue is the concept of what constitutes a
  real illness
• What is to be done?
• How do different concepts of illness affect our
  treatment of ill people?
• How do different concepts of illness affect what
  treatment we expect?
• What treatments can made be available on NHS?

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Definition Diagnosis
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CFS/ME A History

• 1934 LA County form of polio affecting staff
• 1955 Royal Free Disease (outbreak in North London
  doctors nurses)
• 1969 Benign Myalgic Encephalomyelitis (UK) WHO
  International Classification of Diseases
• 1985 Lake Tahoe (Nevada) illness
• 1988 Holmes criteria Chronic Fatigue Syndrome
  (US)
• 1980/90s Center for Disease Control Prevention,
  Atlanta, US
• 1991 Oxford Criteria
• 1995 Bruce Carruthers Diagnosis Protocol for
  Canadian Clinical Definition

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Main Presenting Symptoms (Carruthers)

• Fatigue
• Post-exertion malaise
• Sleep disfunction e.g. hypersomnia, narcolepsy
• Disrupted immune system
• Neurological or cognitive manifestations
• Pain / myalgia (esp. headaches)
• Triggered by viral infection
• Duration of at least six months

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Exclusionary Diagnosis

• No agreed physical marker
• no positive test
• other causes must be eliminated
• Similar symptoms to
• Flu
• Glandular fever
• Viral infection
• Syndrome defined by cluster of presenting
  symptoms not by underlying cause (none identified)

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Severity NICE definitions

• Mild generally able to carry on everyday
  activities, such as their work or education, or
  housework, but with difficulty. To achieve this,
  they may have given up hobbies and social
  activities and need to rest in their spare time.
• Moderate cannot move around easily and have
  problems continuing normal levels of daily
  activities. They have usually had to give up
  their work or education, may need to sleep in the
  afternoon and rest frequently between activities,
  and have problems sleeping at night.
• Severe Will be able to carry out minimal daily
  tasks only, face washing, cleaning teeth, have
  severe cognitive difficulties and be wheelchair
  dependent for mobility. These people are often
  unable to leave the house except on rare
  occasions with severe prolonged after-effect from
  effort.

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Chronic Condition

• Complex and heterogeneous syndrome
• Uncertain causation current research includes
• Neurological
• virus or another infectious agent might provoke
  an abnormal immune response (various viruses have
  been suggested)
• hypothalamic-pituitary-adrenal axis abnormalities
• No accepted cure and no universally effective
  treatment (ineffective or counterproductive in
  others).

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Umbrella Term?

• Vague, Various Subjective Clinical
  characteristics dustbin diagnosis
• Estimates 100 000 to 250 000 cases in UK
• Misdiagnosis? Failing to test for other
  conditions
• Is it
• One condition, or
• group of several distinct, underlying disorders
  with many clinical characteristics in common?
• Plethora of research methods gt conceptual
  confusion especially for newly diagnosed

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Alternative History
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Alternative History of Fatigue

• Exhaustion Tired All The Time (TATT)
• common cause for visiting primary health care
• Hysteria
• Symptoms vary New forms and modern
  communications
• 1996 David Bell full range of hysterical
  symptoms is still to be seen in wards
• Neurasthenia (Simon Wessely New Wine in Old
  Bottles, 1990)
• Physical marker sought but not found
• Royal Free 1970 article in BMJ mass
  hysteria
• 1980s / 90s Yuppie Flu Epstein-Barr (herpes)
  virus
• 1996 75 physicians believed ME to be a
  psychological disorder

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The Psychological Dimension

• Mental
• contributor to the symptoms' onset, severity and
  duration
• Mood Disorder
• depressive illnesses and anxiety disorders
• Somatoform / Hysteria
• Not single, consistent, unified affliction
  (various symptoms)
• Anxiety / stress is converted into physical
  condition
• Ian Hacking Transient Mental Illness
• Iatrogenic / Doxogenic accommodation

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Common associated factors

• Female male ratio as high as 41 (depending on
  source)
• Mid 90s Harvard Medical School 80 of CFS are
  female
• Personality traits (Prins et al 2004)
• neuroticism and reassurance-seeking behaviour
• health anxiety such as health worry
  preoccupation
• Introversion
• Perfectionism.
• Presence of other somatic symptoms
• Recent adverse life events.
• These patients appear to have difficulty with
  problem-solving in life crises, and instead of
  working out solutions tend to develop physical
  symptoms. Dr Christopher Bass in Pulse 10 Dec
  2008

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Kumar and Clarks Clinical Medicine (5th 6th
eds.)

• Psychological Condition
• CFS is the correct term to use
• Associated with Perfectionist, obsessional and
  introspective personality traits, childhood
  trauma (physical and sexual abuse).
• two thirds of patients with a symptom duration
  of more than six months may have an underlying
  psychiatric disorder.

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Philosophical Issues
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Real Illness

• Metaphysics of real illness
• bodily, biological, neurological underlying cause
  
• Programmatic working hypothesis
• primary disease entity exists and that the
  biopsychosocial aspects are consequential (Press
  coverage)
• Definitions listed earlier
• Recognition of reports not necessarily claim that
  pathogen exists
• Influential doctors produce unified field theory
  for vague syndrome
• Patients Desire for naturalistic explanation
• this is what is wrong with me
• Cf Carel where desire is not to be reduced to
  naturalistic interpretation

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Model of Mind

• What model of mind?
• Neurobiological how do mind and neurobiology
  interact?
• Assumption of mind / psyche as epiphenomenon
• Notions of mind and body are constantly being
  challenged in illness
• Changes in terminology are changes in dominant
  understanding of mind
• definitions of depression
• differences between hysteria and somatoform
• Psyche and unconscious
• Brain and neurology

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Models for understanding Hysteria

• Body gt impact on mind
• Recategorised as unrecognised organic illness
• Mental troubles gt expressed as disturbance of
  the body
• destructive resolution of conflict
• Unconscious desires gt pathological changes
• Bodily manifestation of powerlessness
  (Showalter)

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Patient Experience
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Patient Experience

• Lack of expert knowledge to be received
• Conflicting information and opinion regarding
  treatment offered
• Lack of shared experience
• Clumsy primary health responses
• Desire for validation and recognition of
  condition
• Importance of Support Groups
• hysterical subterfuge of ignorance
• Organised for recognition of condition as real
  political dimension
• Lack of funding into research for biomedical,
  physical causes / mechanisms

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Stigma and Mental Health

• There is a great deal of frustration amongst the
  CFS/ME community that the progress made in the
  late 1980s and early 1990s toward regarding
  CFS/ME as a physical illness has been
  marginalised by the psychological school of
  thought. It is clear the CFS/ME community is
  extremely hostile to the psychiatrists involved.
• Gibson Report (26th November 2006)
• People with ME/CFS will, quite rightly, feel
  upset when they are told by GPs that their
  illness is 'all in the mind' and that the only
  form of effective treatment is psychiatric
  intervention. ME Association

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Aversion to Psychiatry

• Exclusion of Psychiatrists from Gibson Inquiry
  and NICE guidelines was the condition for
  participation of patient support groups
• Stigma moral vector in ecological niche
  (Hacking)
• Certain conditions bear a stigma
• Other conditions are misfortunes that befall
  decent people

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Abnormal Illness Beliefs (AIB)

• Illness beliefs - The way in which abnormal
  illness behaviour and illness attributions
  (especially about cause) may be perpetuating ill
  health and disability in some CFS/ME patients
  remains a contentious issue.
• It is thought that certain strongly held beliefs
  about the cause of the illness can impede
  progress. These include the view that the illness
  is entirely physical or is caused by a persistent
  virus. These beliefs could be partially correct -
  e.g. a virus could have provoked a persistent or
  prolonged change in physical functioning.
• However, they could also act as obstacles to
  recovery or to necessary treatment. It seems
  important that patients and professionals keep
  open minds since knowledge continues to grow.
  Positive attitudes and cooperation based on
  mutual respect seem likely to produce best
  outcomes.
• Source NHS A Report from the CFS/ME Working
  Group
• Chair Allen Hutchingson

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Hysteria AIB

• Contemporary hysterical patients blame external
  sources for psychic problems. A century after
  Freud, many people still reject psychological
  explanations for symptoms they believe
  psychosomatic disorders are illegitimate and
  search for physical evidence that firmly places
  cause and cure outside the self.
• Elaine Showalter Hystories 1997

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Re-evaluating Patient Experience

• Concern
• public disbelief e.g. malingering
• Lack of social support
• NHS working groups institute "trident" approach
• research findings,
• the qualitative experience of patients,
• and broader clinical opinion.
• ME Association response to NICE
• A key feature of any such guideline is that it
  must
• reflect the wide variety of clinical
  presentations and pathophysiological mechanisms
  that come under the ME/CFS umbrella.  
• Equally, it must be acceptable to people who have
  this illness.

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Phenomenology and Cognitive Behaviour Therapy
(CBT)
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Phenomenology

• Husserl Suspension of the metaphysics of Mind /
  Body dualism
• Description of experience as it is structured
  without explanatory categorisation (abstraction
  into mental and physical components is secondary)
• Not analytic interpretation of intentionality
  which sees it as a quality (aboutness) by which
  mental states are differentiated from physical
• Suspend discussion of mechanism and stigma
• Syndrome not illness or disease
• Treating behaviours rather than causes

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Cognitive Behaviour Therapy

• One of main treatments offered through NHS
• Addresses the predisposing, precipitating and
  perpetuating factors
• Key features
• MUPS medically unexplained physical symptoms
• Vs rigid and extreme beliefs
• encouraging flexibility in patient views
• Gibson these methods simply help patients deal
  better with their symptoms.

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Reassurance of Patient

• your symptoms are real
• the tests are all normal
• there is no relevant organic disease to account
  for your symptoms
• the symptoms are not caused by any disease or
  damage
• the symptoms are not your fault
• let us explore ways of helping you to cope with
  and manage these symptoms.

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NICE on CBT

• If you are offered CBT, it does not mean that
  your healthcare professionals think your symptoms
  are in your head. It does not mean that
  healthcare professionals think the persons
  symptoms are in their head or made up it is
  used to help in many other illnesses such as
  cancer, heart problems and diabetes.
• Your CBT therapist should
• recognise your current symptoms
• explain how CBT can help people with CFS/ME by
  linking thoughts, feelings, behaviour and
  symptoms
• agree with you what your aims are
• build a supportive relationship with you.

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Arthur Kleinmann strategy (1993)

• Importance of self-respect in recovery
• Stigma Cultural prejudice
• we cannot dispel this
• those alienated by psychiatry are not going to
  get better
• can only understand it as imaginary, as a
  delusional form of madness
• Provide competing belief to undercut unhelpful
  normalization effect of support groups
• One can affirm the illness experience without
  affirming the attribution for it in other words,
  we can work within a somatic language and do
  all the interventions in such a way as to spare
  patients the delegitimization of their
  experience.

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ME Association on CBT

• Only minority of people who come under the
  diagnostic umbrella of CFS do fit the
  psychosocial model of illness perpetuation, and
  would benefit from such an approach,
• The majority do not, have no significant
  psychiatric co-morbidity, are well motivated, and
  are doing everything they can to try and get
  better. They would, quite rightly, object to such
  an approach being taken to their management.

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CBT

• PROS
• Counselling
• Recognition support
• Not much difference from common sense
• Easy for medical doctors to pick up basics

• CONS
• Objection to institutionalisation of common sense
• Weak representative model of psyche
• Patronising unhelpful beliefs Despite overt
  claims that no judgment is made majority of
  literature and treatment focuses on unhelpful
  beliefs
• Relativism

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Expert Patients Programmes

• ME Association There is no reason why this type
  of advice has to be given by specially trained
  behaviour therapists in hospital
• Self-management
• Recognition that patients with chronic illness
  understand their condition better than medics
• Life skills
• Effective communication with professionals
• Lay-led courses for professionals
• Expert Patient / Primary Care

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ME Association Advice on Lifestyle

• Following a thorough assessment, go on to develop
  an individual management plan.
• It is unlikely that one person alone will be able
  to provide all the answers to all of the problems
  you face one idea is a team approach
  co-ordinated by a key worker with experience and
  knowledge of chronic fatigue syndromes - perhaps
  your GP with access to specialist advice (adopted
  by NICE).
• Adopt common sense, self-help strategies (ie
  pacing a person's activities according to stage
  and severity of their illness) that have been
  repeatedly endorsed by people with ME/CFS.

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Conclusions Questions

• What is CFS/ME?
• Concept of illness is central issue
• Axis of philosophy of mind
• Attempts to evade this philosophical issue (CBT)
  are counterproductive
• What are the implications of not alerting
  patients to alleged psychiatric dimension and
  history?
• Recovered are not within system
• NHS faces difficulties in providing care
• General Implications Psychopathology of everyday
  life?

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References

• Bass C Need to Know - somatoform disorders
  Pulse December 10, 2008
• Gibson Inquiry Parliamentary Group on
  Scientific Research into Myalgic
  Encephalomyelitis (ME) - Inquiry into the status
  of CFS/ME and research into causes and treatment
  chair Dr Ian Gibson MP
• Prins JB, van der Meer JW, Bleijenberg G (2006).
  "Chronic fatigue syndrome". /Lancet/ 367
  (9507) 346-55. PMID 16443043
• Prins JB, Bos E, Huibers MJ, Servaes P, van der
  Werf SP, van der Meer JW, Bleijenberg G (2004).
  "Social support and the persistence of complaints
  in chronic fatigue syndrome. Psychother
  Psychosom/ 73 (3) 174-82. PMID 15031590 .