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

1. 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

2. 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.”

3. Recommendations of the CMO’s Working Group on CFS/ME • Recognition • Treatment and Care • Health Service Planning • Education and Awareness • Research

4. Research Priorities - Report to CMO • Aetiology and Pathogenesis • Epidemiology and Natural History • Spectrum and/or Sub-Groups • Therapeutic Interventions • Outcome Measures • Models of Care

5. 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

6. 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)

7. Resources • 1 Collaborative • 13 Clinical Network Coordinating Centres • 47 Local Multi-Disciplinary Teams (36+11) • 285 Staff – Variety of Disciplines/Specialities • 6 Education & Training Events • 2 Collaborative Network Events • n Local and National Patient Group Links

8. Services provided (to March 2006) 10,942 Adults 669 Children & Young People of whom about 90% will have had specialist therapy input

9. 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

10. 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

11. 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

12. 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?

13. 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

14. But … What we really need are more data, not more hypotheses!