Chronic fatigue syndrome/MEthe epidemic
MIRELLA LING
Scope
 Definition of syndrome
 Common & uncommon exclusions
 Evidence based treatments
 NICE backed treatment
 Relapse management
 research
 Local topics/discussion
 More common than severe AIDS or than many
cancers -300 in Worcestershire of 500,000
population
 250,000 in UK
 0.5% in 18-46 year olds,2% in adolescents
4 month cut off
 GPs can now refer in patients who had qualifying
symptoms for 4 months per NICE
 though by Fukuda criteria no formal diagnosis to 6
months , so named as ‘post viral fatigue’ in
discussion with patient
 We use term cfs/me in discussion with
employers‘Post viral fatigue’ patients can not be
protected under disability discrimination act-unlike
cfs/me
Definitions:Worcester uses-Fukuda(CDC)
 More than 4 of…..
 Self-reported impairment in short term memory or
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concentration
Sore throat
Tender cervical or axillary nodes
Muscle pain
Multijoint pain without redness or swelling
Headaches of a new pattern or severity
Unrefreshing sleep
Post-exertional malaise lasting ≥24 hours
 Not predating and associated with 6 months fatigue
with significant reduction in functioning-taken as
50%
 other symptoms from digestive disturbance/
intolerance to alcohol/light/noise/
autonomic nervous system problem/
palpitations
support diagnosis
Alternative definition
 Canadian criteria more immunological/neurological
syndromes need to be included-stricter
 2 neurological symptoms
 Preferred by ME patients
 Less chance of depression getting confused with ME
Main ruleouts
 Fibromyalgia/chronic pain as main symptom even if
also cfs PAIN CLINIC ALAN BENNETT OR
RHEUMATOLOGY FOR HYDROTHERAPY
 Part treated depression or psychiatric disorder
 (Thyroid disease/NIDDM)
Exclusions/look for if initial screen NAD
 Sleep apnoea
 Brain tumour
 Addisons/Cushings
 Myopathies-CK
 Coeliac
 HIV/chronic hep B/C
 Malignancy
 Haematological disorder-systemic mastocytosis
Prior blood tests needed
 UE
 FBC ESR
 LFT
 TSH
 GLUCOSE
 CRP
 CALCIUM BONE PROFILE
 CK when indicated
 TTG = coeliac blood test or duodenal biopsy
Treatments offered by Worcestershire clinic
 Diagnostic service with senior doctor
 Per PACE trial
 graded activity-physio
 CBT/psychology review
 Adaptive pacing/general advice forms a part
 Dietician- rarely used
Service
 sees 15 referrals monthly inc out of Worcestershire
 Not increased 2008-2010.60% have cfs approx and
all are referred though not always to team here may
be Stourbridge etc
 Paeds see those to 16 or to 18 in full time education
 If we take over a pt from paeds-see as new and
reassess;not always all new bloods
Lyme disease
 Treatment of chronic Lyme not warranted under
current NHS and British Infection society guidelines
unless never treated & serologically proven by NHS
(CE marked)lab
 Then only doxycycline 100mg bd (or amoxycillin 1g
tds)
 4 weeks for arthritis,2 weeks for early Lyme
 True neuro/cardio complications admit
No evidence in mainstream journals for
 Lightening process still under review
 Mitochondrial studies/treatment
 Amygdala training (Gupta technique)
 Vitamin B12 to above normal level
 Magnesium injections
 Hyperbaric oxygen
 Mindfulness-but used in WRHin 0.5 session
 Stimulants eg Ritalin(methylphenidate)
 Low dose thyroxine
 Efamol marine
No evidence for
 Routine vit D test/Rx

The above treatments are therefore outside NHS
treatment
Vitamin D
Don’t test routinely in cfs, use severe pain especially
fingers/bones as guide or if patients have low serum
calcium of which low vit D or magnesium may be causes
 Many healthy subjects have low vitamin D (in February
when less sunlight if healthy subjects are tested 50-70%
would be’deficient’ on blood testing by current limits),so
caution needed and we don’t treat borderline levels
 Below 20 iu/ml total vit D and predominant
pain/weakness even with normal calcium/alk phos may
merit 3 months colecalciferol 10000 iu daily with 2 weekly
bone profile
Viral update
 XMRV,1 of 4 studies only showed excess XMRV in
cfs pts
 No treatment options from this data