Chronic Fatigue Syndrome Dr Euan Thompson Medical Director, Abermed

1. Chronic Fatigue SyndromeDr Euan ThompsonMedical Director, Abermed

2. Difficult…. Poorly understood Poorly recognised

3. ME / Chronic Fatigue Syndrome “Myalgic Encephalomyelitis” Myalgia = painful muscles Encephalitis = inflammation of the brain Encephalopathy = “something wrong with the brain”.

4. Chronic = long-term Fatigue = cognitive or physical Syndrome = A group of symptoms that collectively indicate or characterize a disease, psychological disorder, or other abnormal condition ME / Chronic Fatigue Syndrome

5. Little epidemiological information on this condition “silent affliction” However:- Fairly common Estimated 0.2-0.4% population Wide age range Most commonly early 20’s to mid-40’s Twice as common in women than men Affects all social groups Affects all ethnic groups

6. Prognosis very variable Many have fluctuating course with setbacks Most will improve …but not completely Most get better quickly In those who do not recover quickly, it may take a long time. Worse in those with slow-onset illness

7. What are the causes? Predisposing Factors vs Maintaining Factors Predisposition + trigger ? Illness Maintaining factors thereafter

8. Predisposing Factors Being female Familial Twin studies suggest heredity (ie genetic link), but family environment also influential Personality Mixed research findings Other disorders irritable bowel syndrome Fibromyalgia Atypical pain syndromes Previous mood disorder

9. Triggers? Infections Glandular fever / meningitis / hepatitis – 10% are chronically fatigued Various other infections – less frequently Immunisations Weak evidence Life Events Weak evidence Stress associated with setbacks, but ?also trigger Physical injuries More likely to trigger fibromyalgia than CFS Environmental toxins Weak evidence for organophosphates

10. Maintaining factors Sleep disturbance Mood disorders Common Can mimic or coexist with CFS Can modify symptoms of CFS Inactivity Fatigue begets fatigue

11. Maintaining factors Overactivity beyond what person can cope with Can lead to a setback Intercurrent stressors Eg infections / surgery / vaccinations Iatrogenic illness Wrong advice / medications Illness beliefs Can be an obstacle to recovery (Membership of the ME association)

12. Illness beliefs – disease vs illness Disease Measured diagnosis Illness how individual reacts (beliefs and behaviours, family, society, dr collusion) Sickness how society reacts Can have disease with no illness Can have illness with no disease

13. How might it work? Biomedical model Physical disease – by as yet undefined mechanism Biopsychosocial model Illness starts, then is affected by beliefs / coping styles / behaviours Immune Some subtle non-specific changes seen in CFS

14. How might it work? (cont…/) Hormones Could contribute to sleep problems and disturbed thermoregulation Central Nervous System Symptoms suggest involvement – but studies inconsistent Peripheral Nervous Lesions Uncertain Autonomic Nervous system Uncertain

15. Illness behaviour Primary gain Treatment of condition Reduction in anxiety about symptoms Secondary gain Covert advantage not directly related to professed desired outcome Subconscious, but motivates the behaviour Eg sympathy, pity, attention “Tertiary gain” The benefit the carer (or doctor!) gains from looking after the patient

17. Symptoms

18. What are the symptoms? “syndrome” Vary from person to person Wide-ranging variety of symptoms Underlying core symptoms fatigue gastrointestinal disturbance Cognitive impairment Neuromuscular symptoms

19. The range of possible symptoms Persistent fatigue – physical and cognitive Cognitive impairment Post exertion malaise Pain – muscular / neuropathic / joint / headache / head pain Sleep disturbance Temperature disturbance Dizziness Vertigo Increased sensitivity to sensory stimuli Double vision Blackouts Atypical convulsions Loss of speech Loss of swallowing

20. Management

21. Management Make a positive diagnosis

22. Categorisation Mild Still working, mobile, self-caring Use the weekend to rest after the week Moderate Reduced mobility, peaks/troughs of activity Usually stopped work Sleep in afternoon for a few hours, poor sleep at night. Severe (25% of people affected) Minimal daily tasks – eg face-washing Wheelchair dependent Unable to leave the house except on rare occasions Very Severe Bed-bound Unable to carry out any tasks for themselves Unable to tolerate noise or light

23. Management of the syndrome (cont…/) No cure for this illness Equipment and practical assistance Therapies for modification of the syndrome Graded exercise Cognitive Behavioural Therapy (CBT) Pacing Counselling Symptom control Complementary approaches

24. Graded Exercise Good evidence to support this Progressive building up of coping abilities

25. Cognitive Behavioural Therapy (CBT) What / how we think modifies how we feel and what we do. Challenging illness beliefs affects illness behaviour Supportive evidence for this

26. Pacing Energy management strategy “chunking” Breaking down a task into little pieces “I’m not too tired to….”

27. Counselling Research lacking Suggestion that positive direction may help

28. Symptom control Sleeplessness Pain Patients with CFS can be unusually responsive to medications

29. Complementary approaches Popular Largely unregulated Largely untested – efficacy or safety Just because it is “natural” doesn’t mean it’s safe or effective!

30. What about work?

31. What about work? Disability position Not specifically excluded by DDA (1995) If chronic and sufficiently severe, could be classed as Disability under the Act Once classified as Disabled, will always be disabled Reasonable adjustments?

32. In summary… Poorly understood illness and disease process Debilitating Some risk factors Some potential triggers Some modifying / maintaining factors No one “cure” but can be modified somewhat Possibly DDA-applicable

33. Any questions?