2007

Facts  Common illness  Prevalence = 4/1000 population  As disabling as MS, SLE, RA and other chronic diseases  Complex range of symptoms  Cause and disease process not understood  Skill full management can improve functioning

Symptoms  Fatigue  New or had a specific onset  Persistent or recurrent  Unexplained by other conditions  Caused reduction in activity characterised by post exertional fatigue which is delayed by at least 24 hrs with slow recovery over several days

Symptoms  Fatigue and one of more of the following  Sleep disturbance – insomnia, hypersomnia, un- refreshing sleep, disturbed sleep wake cycle, xs REM sleep.  Muscle/joint pain  Headaches  Painful lymph nodes without pathological enlargement  Sore throat

Symptoms  Fatigue +  Cognitive dysfunction – difficulty thinking, inability to concentrate, impairment of short term memory, difficulties with word finding, planning organising thoughts, and information processing.  Physical or mental exertion makes symptoms worse  Dizziness  Palpitations not due to CVS disease

Symptoms  Fluctuate in severity  Change over time  Often associated with prolonged stress  Often follow a boom and bust cycle  Deconditioning occurs - loss of physical fitness as physiological response to prolonged inactivity

Diagnosis  Beware red flag features  Localising or focal neurological signs  Signs and symptoms of inflammatory arthritis or connective tissue disease  Signs and symptoms of cardiovascular disease  Significant weight loss  Sleep apnoea  Clinically significant lymphadenopathy

Investigations  Arrange following investigations  Urinalysis – protein, blood, glucose  FBC, ESR, C reactive protein  U&E’s, serum Creatinine, LFT’s, TFT’s  Random blood sugar  Screening test for gluten enteropathy  Creatinine kinase  Serum ferritin children and young people only

Investigations  Use clinical judgement on additional tests to exclude other diagnoses  Do not do  Ferritin, B12, folate in adults unless anaemic or abnormal MCV  Serological testing for viruses/bacteria unless indicated

Diagnosis  A diagnosis should be made after other possible diagnoses have been excluded and the symptoms have persisted in  An adult for 4/12  A child for 3/12  The diagnosis in a child should be confirmed by a paediatrician  Advice on symptom management need not be delayed until diagnosis established

Diagnosis  Reconsider diagnosis if patient has none of  Post exertional fatigue  Cognitive difficulties  Sleep disturbance  Chronic pain

Diagnosis  When taking history look for  Initial pattern of illness  Precipitating causes  Factors that perpetuate the fatigue  Xs physical activity  Xs cognitive activity  Noise  Conflict/stress  Anxiety

Stages  There are 3 different stages in the natural course of CFS  Acute illness  Maintenance or stabilisation  recovery

Definition  Mild CFS  Mobile  Can care for themselves  Can do light domestic tasks  Still working or in education  Have stopped all leisure pursuits  Often need days off work/school

Definition  Moderate CFS  Reduced mobility  Restricted in all activities of daily living  Stopped work or education  Need rest periods  Sleep is poor quality and disturbed

Definition  Severe CFS  Unable to do any activity for themselves  Or can carry out minimal daily tasks  Severe cognitive difficulties  Depend on wheelchair for mobility  Often unable to leave house  Often spend most of their time in bed  Extremely light and noise sensitive

Referral  Offer referral  Within 6/12 of presentation to people with mild CFS  Within 3-4/12 of presentation to people with moderate CFS  Immediately to all people with severe CFS

General Management  Key elements  Work in partnership with the person  Identify and manage symptoms early  Make an accurate diagnosis  Consider alternative diagnoses  Managing severe CFS is difficult and complex ad requires specialist advice

General Management  Sleep management  Illness will not improve while there is sleep disturbance  Advise on good sleep hygiene  Only sleep in bedroom  Regular bedtime and getting uptime  No day time sleeps  No stimulants prior to bedtime – food, drink, activities  Amitriptyline 10mg increase by 10mg every 2 weeks till 30 – 50mg

General Management  Rest periods = not engaged in physical or mental activity  Alternate activity periods with rest periods  Limit to 30mins per time  Several per day  Quiet room, eyes closed, muscles relaxed but not asleep  No disturbance

General Management  Diet  Well balanced nutritional diet  Include slow release starchy foods  Not in NICE  May tolerate hypoglycaemia poorly aggravating symptoms so need to eat every 3-4 hrs  Manage nausea conventionally – eat little and often, snack on dry starchy foods, sip fulids  Exclusion diets not recommended

Management  Mild to moderate CFS  Activity management  Goal orientated person centred approach  Activities have physical, emotional and cognitive components  Diary that records cognitive and physical activities, rest and sleep – establishes a base line to work from  Gradual increase activity above baseline  Have a variety of different activities, sleep and rest

Management  Mild to moderate CFS  Activity management  Spread out difficult or demanding tasks over several days  Split activities into small achievable tasks  Goal setting, planning and prioritising activites

Management  Mild to moderate CFS  CBT  Delivered by health care professional trained in CBT and experience in CFS  One to one if possible  Graded exercise therapy GET  Delivered by healthcare professional trained in GET and experienced in CFS  One to one

Management  Severe CFS  Refer to specialist services  Individually tailored activity management program  Delivered at home, by telephone, or  Drawing on principles of CBT, GET and activity management.  Occasionally inpatient assessment and treatment

Detrimental strategies  Do not use  Unstructured or vigorous exercise  Specialist management programs offered by practitioners with no experience of the condition  The following drugs  MAOI’s  Glucocorticoids  Dexamphetamine  Methyphenidate  Thyroxine (Prof Findley does)  Antiviral agents