Chronic fatigue syndrome/ME the epidemic

M I R E L L A L I N G

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 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