Chronic Fatigue Syndrome CFSME Jigsaw Pieces Services and

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

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. ”

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

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

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

CFS/ME Service Investment Steering Group • £ 8. 5 M over 2 years pump-priming for new services for people with CFS/ME (England) (thereafter: £ 6. 0 M pa recurrent) • Local Multi-Disciplinary Teams (50) 28 in Year 1 (50%) 22 in Year 2 • Clinical Network Coordinating Centres (13)

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

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

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

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

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

Clinical Clues Ø Patient Narratives Ø Diagnosis - Pattern recognition Ø Treatment – Implicit messages Ø Variations on a theme (or themes)? Ø A Platonic Essence? ØBased on the patients’ images/narratives? ØBased on prior medical/scientific constructs?

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

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