Chrnic Fatigue Syndrme (Als knwn as Myalgic encephalmyelitis/encephalmyelpathy) What is CFS/ME? CFS/ME cmprises a range f symptms that include fatigue, malaise, headaches, sleep disturbances, difficulties with cncentratin and muscle pain. A persn's symptms may fluctuate in intensity and severity, and there is als great variability in the symptms that different peple experience. CFS/ME is characterised by debilitating fatigue that is unlike everyday fatigue and can be triggered by minimal activity. This raises especially cmplex issues in adults and children with severe CFS/ME. Epidemilgy There is a lack f epidemilgical data fr the UK, s ppulatin estimates are based n extraplatins frm ther cuntries. Overall, evidence suggests a ppulatin prevalence f at least 0.2 0.4%. This means that a general practice with 10,000 patients is likely t include up t 40 adults and children with CFS/ME; half f these peple will need input frm specialist services. Aetilgy There are many different ptential aetilgies fr CFS/ME, including neurlgical, endcrine, immunlgical, genetic, psychiatric and infectius causes which have been investigated, but the diverse nature f the symptms cannt yet be fully explained. Symptms Healthcare prfessinals shuld cnsider the pssibility f CFS/ME if a persn has: fatigue with all f the fllwing features: new r had a specific nset (that is, it is nt lifelng) persistent and/r recurrent unexplained by ther cnditins has resulted in a substantial reductin in activity level characterised by pst-exertinal malaise and/r fatigue (typically delayed, fr example by at least 24 hurs, with slw recvery ver several days) and ne r mre f the fllwing symptms: difficulty with sleeping, such as insmnia, hypersmnia, unrefreshing sleep, a disturbed sleep wake cycle muscle and/r jint pain that is multi-site and withut evidence f inflammatin headaches painful lymph ndes withut pathlgical enlargement sre thrat cgnitive dysfunctin, such as difficulty thinking, inability t cncentrate, impairment f shrt-term memry, and difficulties with wrd-finding, planning/rganising thughts and infrmatin prcessing physical r mental exertin makes symptms wrse general malaise r 'flu-like' symptms dizziness and/r nausea palpitatins in the absence f identified cardiac pathlgy 1
Histry, Examinatin and Investigatins A full histry (including exacerbating and alleviating factrs, sleep disturbance and intercurrent stressrs) shuld be taken, and a physical examinatin and assessment f psychlgical wellbeing shuld be carried ut. A child r yung persn wh has symptms suggestive f CFS/ME shuld be referred t a paediatrician fr assessment t exclude ther diagnses within 6 weeks f presentatin. The fllwing tests shuld usually be dne: urinalysis fr prtein, bld and glucse FBC U&Es LFTs TFTs (and thyrid perxidise antibdies) ESR CRP randm bld glucse celiac screen (tissue transglutaminase antibdies and ttal serum IgA) serum calcium creatine kinase Vitamin D levels serum ferritin levels autimmune screen Clinical judgement shuld be used when deciding n additinal investigatins t exclude ther diagnses. Serlgical testing shuld nt be carried ut unless the histry is indicative f an infectin. Depending n the histry, tests fr the fllwing infectins may be apprpriate: chrnic bacterial infectins, such as brrelisis chrnic viral infectins, such as HIV r hepatitis B r C acute viral infectins, such as infectius mnnuclesis latent infectins, such as txplasmsis, Epstein Barr virus r cytmegalvirus Diagnsis A diagnsis shuld be made after ther pssible diagnses have been excluded and the symptms have persisted fr: 3 mnths in a child r yung persn; the diagnsis shuld be made r cnfirmed by a paediatrician. Management 1. Symptms There is n knwn pharmaclgical treatment r cure fr CFS/ME. Hwever, symptms f CFS/ME shuld be managed as in usual clinical practice. 2
Specific drug treatment fr children and yung peple with CFS/ME shuld be started by a paediatrician. Hwever, prescribing may be cntinued in primary care, depending n the preferences f the patient and their carers, and lcal circumstances. If a persn experiences nausea as part f CFS/ME, this shuld be managed cnventinally, including giving advice n eating little and ften, snacking n dry starchy fds and sipping fluids. The use f anti-emetic drugs (e.g Buccastem sl)shuld be cnsidered nly if the nausea is severe. 2. Diet Healthcare prfessinals shuld emphasise the imprtance f a well-balanced diet. They shuld wrk with the persn with CFS/ME t develp strategies t minimise cmplicatins that may be caused by nausea, swallwing prblems, sre thrat r difficulties with buying, preparing and eating fd. Healthcare prfessinals shuld emphasise the imprtance f eating regularly, and including slw-release starchy fds in meals and snacks. The physilgical cnsequences f nt ding s shuld be explained t the persn with CFS/ME. Althugh exclusin diets are nt generally recmmended fr managing CFS/ME, many peple find them helpful in managing symptms, including bwel symptms. If a persn with CFS/ME undertakes an exclusin diet r dietary manipulatin, healthcare prfessinals shuld seek advice frm a dietician because f the risk f malnutritin. 3. Functin and quality f life Sleep Identifying the cmmn changes in sleep patterns seen in CFS/ME that may exacerbate fatigue symptms (such as insmnia, hypersmnia, sleep reversal, altered sleep wake cycle and nnrefreshing sleep). Prviding general advice n gd sleep hygiene. Intrducing changes t sleep patterns gradually. Melatnin may be cnsidered fr children and yung peple with CFS/ME wh have sleep difficulties, but nly under specialist supervisin because it is nt licensed in the UK. Peple with CFS/ME shuld be advised that excessive sleep des nt generally imprve physical r mental functining, and excessive perids f daytime sleep r frequent napping may further disrupt the sleep wake cycle. Rest perids These are a cmpnent f all management strategies fr CFS/ME. Healthcare prfessinals shuld advise peple with CFS/ME n the rle f rest, hw t intrduce rest perids int their daily rutine, and the frequency and length apprpriate fr each persn. This may include: Limiting the length f rest perids t 30 minutes at a time. 3
Intrducing 'lw level' physical and cgnitive activities (depending n the severity f symptms). Using relaxatin techniques. Equipment t maintain independence Referral t physitherapy is imprtant t supprt graded activity prgrammes Fr peple with mderate r severe CFS/ME, prviding r recmmending equipment and adaptatins (such as a wheelchair, blue badge r stairlift) shuld be cnsidered as part f an verall management plan, taking int accunt the risks and benefits fr the individual patient. This may help them t maintain their independence and imprve their quality f life. Educatin Healthcare prfessinals shuld wrk clsely with scial care and educatin services t ensure a cmmn understanding f the gals f the persn with CFS/ME. The use f a flexible apprach shuld be discussed, including hme tuitin and use f equipment that allws a gradual reintegratin int educatin. Time in educatin shuld nt be used as a sle marker f prgress f CFS/ME, and educatin shuld nt be the nly activity a persn undertakes. There shuld be a balance between time spent attending schl r cllege and ding hmewrk, and time spent n hme and scial activities. Psychlgy Patients wh are struggling with the impact f CFS shuld be referred fr psychlgical supprt. 4. Referral t specialist CFS/ME care within 6 mnths f presentatin fr peple with mild CFS/ME within 3 4 mnths f presentatin fr peple with mderate CFS/ME symptms immediately fr peple with severe CFS/ME symptms GPS can refer t the Expert Patients Prgramme Treatments ffered at specialist CFS/ME care include: cgnitive behaviural therapy graded exercise therapy activity management prgrammes grup therapy Prgnsis Mst adults with CFS/ME will imprve ver time and sme peple will recver and be able t resume wrk and nrmal activities. Hwever, thers will cntinue t experience symptms r relapse and sme peple with severe CFS/ME may remain husebund. The prgnsis in children and yung peple is mre ptimistic. 4
CFS/ME Pathway Overview Histry and symptms suggestive f CFS/ME? Examine and perfrm relevant bld tests Abnrmal findings prbably nt CFS/ME Nrmal findings and debilitating fatigue persists If ANA > 1:640 refer t Paediatric Rheumatlgy at SPH (Dr Baksh) Secnd line investigatins fr differential diagnsis Diagnse CFS/ME Manage symptms and imprve functin and quality f life factrs Abnrmal results Nt CFS/ME Treat/refer as Nrmal results Likely CFS/ME but keep under review Referral t GOSH/UCLH Mild CFS/ME within 6 mnths Mderate CFS/ME within 3-4 mnths Severe CFS/ME immediately Created by Dr. Teri Chin, Dr. G. Baksh 2015-08-04 References Guidance adapted frm Chrnic fatigue syndrme/myalgic encephalmyelitis (r encephalpathy): Diagnsis and management f CFS/ME in adults and children NICE clinical guideline 53, issued August 2007. Available at http://www.nice.rg.uk/nicemedia/live/11824/36193/36193.pdf Useful infrmatin fr patients http://www.rcpch.ac.uk/system/files/prtected/page/leaflet.pdf http://www.ayme.rg.uk http://www.actinfrme.rg.uk (includes advice fr the newly diagnsed and pacing activities) Staying Psitive 5
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