Chronic Fatigue Syndrome CFSME Jigsaw Pieces Services and Research

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Chronic Fatigue Syndrome (CFS/ME)Jigsaw Pieces
Services and Research

• Professor Anthony J Pinching
• Associate Dean for Cornwall, Peninsula Medical
  School
• Clinical Lead, CFS/ME Service Investment Programme

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CFS/ME Working Party to CMO

• There is evidence of underprovision of treatment
  and care, with patchy and inconsistent service
  delivery and planning across the country.
• Patients and carers often encounter a lack of
  understanding from healthcare professionals .
  associated with inadequate awareness and
  understanding of the illness.
• There is a paucity of good research evidence and
  very little investment for a serious clinical
  problem that has a pervasive impact on the
  individual and the community.

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Recommendations of the CMOs Working Group on
CFS/ME

• Recognition
• Treatment and Care
• Health Service Planning
• Education and Awareness
• Research

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Research Priorities - Report to CMO

• Aetiology and Pathogenesis
• Epidemiology and Natural History
• Spectrum and/or Sub-Groups
• Therapeutic Interventions
• Outcome Measures
• Models of Care

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CFS/ME Research Opportunities

• Gaps in Knowledge
• Opportunities and Skills
• Working Group Report to CMO
• MRC Research Advisory Group Report
• CFS/ME Service Investment
• Clinical Teams and Linkages
• Research Platform

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CFS/ME Service Investment Steering Group

• 8.5M over 2 years pump-priming for new services
  for people with CFS/ME (England)
• (thereafter 6.0M pa recurrent)
• Local Multi-Disciplinary Teams (50)
• 28 in Year 1 (50)
• 22 in Year 2
• Clinical Network Coordinating Centres (13)

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Resources

• 1 Collaborative
• 13 Clinical Network Coordinating Centres
• 47 Local Multi-Disciplinary Teams (3611)
• 285 Staff Variety of Disciplines/Specialities
• 6 Education Training Events
• 2 Collaborative Network Events
• n Local and National Patient Group Links

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Services provided (to March 2006)

• 10,942 Adults
• 669 Children Young People
• of whom about 90 will have had specialist
  therapy input

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Activities and Functions

• Diagnosis Treatment
• Minimum Data Set
• Network Coordinator Development
• Paperless On-line Documents (POD)
• Yahoo News-Group Networking
• Long-Term Condition Management Project
• Self-Care Project
• Commissioning Group

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Outcomes

• Specialist services for people with CFS/ME that
  are commensurate with clinical need, and that
  also support research and education
• Primary care services that are able to recognise,
  treat and support an increasing proportion of
  people with CFS/ME
• Exemplar service models for patients with other
  chronic diseases

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We now need to

• Secure, consolidate, strengthen and extend the
  new services for patients
• Enhance the awareness and skills of GPs and other
  health professionals, and the public
• Implement NICE Guidelines (2007)
• Capitalise on the research potential of the data
  resources and patient access in the new teams
• Conduct clinical trials of promising interventions

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Clinical Clues

• Patient Narratives
• Diagnosis - Pattern recognition
• Treatment Implicit messages
• Variations on a theme (or themes)?
• A Platonic Essence?
• Based on the patients images/narratives?
• Based on prior medical/scientific constructs?

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Hypothesis

• Persistent Immune Dysregulation after infection
  or other trigger
• Central and peripheral neural dysfunction
  resulting from effects of immune mediators
• Everything else is down-stream secondary or
  adaptive

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But

• What we really need are more data,
• not more hypotheses!