ME/CFS-project at Stockholm Rehabilitation Medicine University Clinic The assignment from Stockholms Läns Landsting (County Council) Why ME/CFS within Rehabilitation medicine? ME/CFS-team Brief overview of the ME/CFS-project: Definition of the clinical problem Definition of evaluation/research goals The multiprofessional assessment The rehabilitation program Some preliminary clinical data Per Julin 1
The assignment from Stockholms Läns landsting (SLL) 3 year project Develop/evaluate assessment and rehabilitation methods for patients with suspected ME/CFS Develop ME/CFS knowledge base and collaboration with primary care Regular contact with ME/CFS patient organisation (RME) Linked to research at Karolinska Institutet Per Julin 2
Why ME/CFS within Rehabilitation Medicine? Based on a SLL focus report on chronic fatigue CFS evaluation at clinic that regularly assess neighboring diagnoses (stress induced depressive syndrome (utmattningssyndrom), chronic pain, fibromyalgia etc) Socialstyrelsens definition of medical speciality areas for physicians (SOSFS 2009:1): Neurospecialist areas Neurology Neurosurgery Clinical neurophysiology Rehabilitation Medicine Per Julin 3
Stockholm Rehabilition Medicine University Clinic Catchment area: Stockholm county (2 million) Patients with large and complex functional impairments/rehabilitation needs related to neurological disorders Team-based assessment and rehabilitation Inpatient and policlinic units: Brain injuries trauma, stroke, encephalitis Policlinic units: Adult habilitation (early aqcuired brain injury) Post-polio syndrome policlinic Chronic pain policlinics (e.g. fibromyalgia) Stress policlinic (stress related depressive syndrome (utmattningssyndrom) ME/CFS-project Per Julin 4
ME/CFS-team 2 physicians Research nurse Psychologist Physiotherapist Occupational therapist Social worker Secretary Per Julin 5
Definition of the clinical problem and evaluation/research questions Clinical problem: CNS infections can produce longstanding fatigue syndromes (i.e. TBE, borrelia, postpolio syndrome, EBV(mononucleosis), Q-fever) - but many other disorders can produce similar symtoms. Stress-induced depressive syndrome (utmattningsyndrom) ICD F43.8 Chronic fatigue syndrome i.e. Oxford-criteria (Sharpe MC et al 1991) Chronic fatiguet > 6 months ( definite onset ), exclusion of other mediclal condition ME/CFS Fukuda 1994 ( CDC-kriterier ), revised Reeves WC 2003 Chronic fatigue > 6 months, ICD G93.3 At least 4 of 8 symtoms: cognitive impairment, sore throat, painful lymphnodes, Muscular pain, artralgia, headache, sleep disturbance, post-excertional malaise Exclusion of other medical and psychiatric disorders ME/CFS Canada-criteria, Carruthers, 2003 6 of 6 symtoms: 1. Newly aqcuired post excertional malase+fatique, 2. Sleep disturbance 3. Pain 4. Neurological/cognitive, 5. autonomic/neuroendocrine/immunologocal 6. >6 months Exclusion of other medical and psychiatric disorders Research hypthesis 2: In ME/CFS = severe CNS dysfunction Multiprofessional rehabilitation can increase quality of life/ participation/ function 1. Correct diagnosis/information/knowledge about your disease 2. Individual (och partly group) rehabilitation based on: 1. type and severity of disease Other disease?: 2. Individual prerequisites and goals Many disordes 3. Balance can produce between chronic treatment/adaptiation/activity/training fatigue and pain. 4. Integration medical/psychological/activity aspects Even using Research stricter hypothesis criteria such 1: In as subjects CDC, studies with using inherited a secondary immune specialist defect/sensitivity evaluation have (NK-cell-function?) shown that among an patients infection initally diagnosed as CFS in primary care up 40% can have other (inactive/active?) can trigger an autoimmune or somatic or psychiatric disorder (often treatable). autoinflammatory reaction with effects on CNS- (measurable with med MRT CBF, CSF-proteomics?) (Prevalence ME/CFS enl. Fukuda-kriterier international studies = 0.2% - about 4000 patients in Stockholm.) Per Julin 6
ME/CFS-project - clinical set-up (started april 2011) 3 week multiprofessional assessment Standardised assessments, tests and rating scales Areas: medical, physical, psychological, cognitive, ADL, social Focus on differential diagnosis (other treatable conditions) Up to 6 months multiprofessional rehabiliation Individual rehabilitation plan Areas: medical, physical, psychological, cognitive, ADL, social ACT/medical yoga groups Patient school Always individual goals - but focus is on improving quality of life (not primary goal to increase activity as such) Per Julin 7
Preliminary data on health related quality of life (SF-36 rating scale): Patients referred to the ME/CFS-project have severe functional impairments (similar to other ME/CFS cohorts) Svensk normpop ME/CFS-projektet (n=24) ME/CFS Canadakriterier n=96 Per Julin 8
Preliminary data on health related quality of life (SF-36 rating scale): 3 week evaluation/assessment can have a positive impact - this shows that the assessment in itself does not seem to lead to worsening of symtoms and maybe also the positive impact of getting a thorough assessment and the diagnosis confirmed by a multiprofessional team dedicated to assessing suspected ME/CFS. 100 Svensk normpop Fre multidisciplinr Efter multidisciplinr bedmning 80 60 40 20 0 PF RP BP GH VT SF RE MH Per Julin 9
ME/CFS-project - links to research at Karolinska Institutet and other collaborations Evaluation of assessments and rehabilition Department of rehabilitation Medicine (Prof. K. Borg) Immunology Dept. of Immunology (Y. Bryceson) Infections Dept. Virology, Uppsala University (J. Blomberg) CFS proteomics Dept. Chemistry, Uppsala University (J. Bergkvist) Sleep Karolinska Sleep Laboratory (D. Friberg) Neuroimaging (MRI cerebral blood flow) 3T MR-unit, Karolinska Huddinge (S. Muller, T-Q Li) Clinical collaborations: Gottfries clinic, Mölndal ME/CFS-center, Ullevål, Oslo, Norway Per Julin 10