ME/CFS Guidelines
ME/CFS GuidelinesMyalgic Encephalopathy (ME)/Chronic Fatigue Syndrome (CFS)Management Guidelines for General PractitionersA guideline for the diagnosis and management of ME/CFSin the community or primary care settingGovernmentof South AustraliaAdelaide WesternDivision ofGeneral Practice2004
DisclaimerThese guidelines have been developed, where possible, by achieving consensus between practising clinicians. The recommendationscontained in these guidelines do not indicate an exclusive course of action, or serve as a standard of medical care. Variations, takingindividual circumstances into account, may be appropriate.The authors of these guidelines have made considerable efforts to ensure the information upon which they are based is accurate and upto date. The authors accept no responsibility for any inaccuracies, information perceived as misleading, or the success of any treatmentregimen detailed in the guidelines.The National Library of Australia Cataloguing-in-Publication entry:Myalgic encephalopathy (ME) and chronic fatigue syndrome(CFS): management guidelines for general practitioners.ISBN 0 7308 9334 0Myalgic encephalomyelitis - Diagnosis.Myalgic encephalomyelitis - Treatment.Chronic fatigue syndrome - Diagnosis.Chronic fatigue syndrome - Treatment.I. South Australia. Department of Human Services. Metropolitan Division.616.0478This publication uses the term Myalgic Encephalopathyrather than the less accepted term Myalgic Encephalomyelitis.This publication may be reproduced in whole or inpart for work, study or training purposes, subject tothe inclusion of an acknowledgement of the source.Any enquiries about or comments on this publication should be directed to:South Australian Department of Human ServicesPrimary Health Care BranchPO Box 287 Rundle Mall 5000South Australia, Australia.
CONTENTSINTRODUCTION4CANADIAN CLINICAL CRITERIA (2003)5DEFINITION OF ME/CFSCo-existing ConditionsDepression and ME/CFSExclusion Criteria6666EPIDEMIOLOGY7AETIOLOGY AND PATHO-PHYSIOLOGY7PATIENT EVALUATIONHistory & ExaminationMental State AssessmentInvestigations8888APPROACH TO MANAGEMENT9PATIENT MONITORING & SELF-MANAGEMENT11CHILDREN AND YOUNG PEOPLE11PROGNOSIS11BURDEN OF ME/CFS12CASE EXAMPLES12APPENDICESAppendix 1 David Bell CFS Disability ScaleAppendix 2 Canadian Clinical R INFORMATIONPublicationsCommunity Support GroupsWebsites16161616
INTRODUCTIONMyalgic Encephalopathy/Chronic FatigueSyndrome (ME/CFS) is a not uncommon medicaldisorder that causes significant ill health anddisability in sufferers.It is now officially recognised by the WorldHealth Organization International Classification ofDiseases, and by recent international andAustralian guidelines on ME/CFS.ME/CFS is also known by other names such asPost Viral Fatigue Syndrome.ME/CFS is characterised by severe, disablingfatigue and post-exertional malaise. Othersymptoms include: Muscle aches and pain Unrefreshing sleep or altered sleep patterns Neuro-cognitive dysfunction (e.g. poorconcentration and memory) Gastro-intestinal symptoms (e.g. irritablebowel) Orthostatic intolerance (e.g. low bloodpressure) Unusual headachesA hallmark of the condition is that symptoms areusually worsened with minimal physical andmental exertion.A taskforce of South Australian clinicians andothers with experience in ME/CFS have developedthis more succinct set of guidelines for GPs andother medical practitioners. Its focus is on the basicdiagnosis and management of this condition in thecommunity or primary care setting.The prognosis for ME/CFS is variable. Mostpatients will generally improve functionality tosome degree over time, usually 3 to 5 years.However, symptoms may fluctuate or relapsesmay occur from time to time. Early interventionand positive diagnosis often result in betterprognosis. However, a significant proportion ofpatients will remain quite debilitated for longerperiods of time.ME/CFS is officially recognised by the WorldHealth Organization InternationalClassification of Diseases.Early intervention and positive diagnosisoften result in better prognosis.Many medical practitioners are not confident indiagnosing and managing ME/CFS patients. Thismay lead to a difficult doctor – patientrelationship, poor management of the conditionand less than adequate outcomes for patients (andtheir carers).ME/CFS guidelines have been developed inAustralia and overseas in the past, but GPs havemade little use of them because of their bulk, lackof clarity and associated controversy.4Myalgic Encephalopathy/Chronic Fatigue Syndrome Guidelines
CANADIAN CLINICAL CRITERIA (abbreviated version) 2003It is recommended that this tick chart be used in the initial consultation to assist with apossible diagnosis of ME/CFS. (NB: Sections 1 to 6 must all be met as indicated below)1) Post-Exertional Malaise and Fatigue:(All criteria in this section must be met)a) The patient must have a marked degreeof new onset, unexplained, persistent, orrecurrent physical and mental fatigue thatsubstantially reduces activity levelb) Post-exertional fatigue, malaise and/orpain, and a delayed recovery period(more than 24 hours to recover)c) Symptoms can be exacerbated by exertionor stress of any kind2) Sleep Disorder:(This criterion must be met)Unrefreshing sleep or altered sleep pattern(including circadian rhythm disturbance)3) Pain:(This criterion must be met)Arthralgia and/or myalgia without clinicalevidence of inflammatory responses of jointswelling or redness, and/or significantheadaches of new type, pattern, or severity4) Neurological/Cognitive Manifestations:(Two or more of the following criteriamust be met)a) Impairment of concentration andshort-term memoryb) Difficulty with information processing,categorizing, and work retrieval, includingintermittent dyslexiac) There may be an overload phenomena:information, cognitive, and sensoryoverload (e.g. photophobia andhypersensitivity to noise) and/or emotionaloverload which may lead to relapsesand/or anxietyd) Perceptual/sensory disturbancese) Disorientation or confusionf) Ataxia 5) Autonomic/Neuroendocrine/ImmuneManifestations:(At least one symptom in at least two of thefollowing three categories must be met):A) Autonomic Manifestations:1) Orthostatic Intolerance (e.g. neurallymediated hypotension (NMH))2) Postural orthostatic tachycardiasyndrome (POTS)3) Vertigo and/or light-headedness4) Extreme pallor5) Intestinal or bladder disturbances withor without irritable bowel syndrome(IBS) or bladder dysfunction6) Palpitations with or without cardiacarrhythmia7) Vasomotor instability8) Respiratory irregularities B) Neuroendocrine Manifestations:1) Loss of thermostatic stability 2) Heat/cold intolerance 3) Anorexia or abnormal appetite,weight change 4) Hypoglycemia 5) Loss of adaptability and tolerance for stress,worsening of symptoms with stress andslow recovery, and emotional lability C) Immune Manifestations:1) Tender lymph nodes2) Recurrent sore throat3) Flu-like symptoms and/or generalmalaise4) Development of new allergies orchanges in status of old ones5) Hypersensitivity to medications and/orchemicals6) The illness persists for at least6 months:(This criterion must be met) NB: ME/CFS usually has an acute onset, but onsetmay also be gradual. A preliminary diagnosis maybe possible in the early stages. The disturbancesgenerally form symptom clusters that are oftenunique to a particular patient. The manifestationsmay fluctuate and change over time.Myalgic Encephalopathy/Chronic Fatigue Syndrome Guidelines5
DEFINITION OF ME/CFSThere are many definitions of ME/CFS. TheFukuda Criteria (1994) is still considered theinternational benchmark for use in ME/CFSresearch, and is often used as a de facto clinicaldefinition. However many see the criteria as beingvague and over inclusive (e.g. Jason 2000).Furthermore, they downplay (i.e. make optional)post-exertional malaise and other cardinal ME/CFSsymptoms.The term Chronic Fatigue Syndrome may conveythe perception that sufferers are simply overtired.However, fatigue is just one of a multitude ofsymptoms.The Canadian Expert Consensus Panel publishedthe first diagnostic ME/CFS criteria for clinical usein 2003. In contrast to the Fukuda Criteria, this newdefinition made it compulsory that to be diagnosedwith ME/CFS, a patient must becomesymptomatically ill after minimal exertion. It alsoclarified other neurological, neurocognitive,neuroendocrine, autonomic, and immunemanifestations of the condition.A modified tick chart of the Canadian ClinicalCriteria is included in this document. (Pages 5 and14.)It is recommended that it be used in the initialconsultation to assist with the diagnosis of ME/CFS.Co-existing ConditionsME/CFS may co-exist with or mimic symptomsassociated with:FibromyalgiaMultiple Chemical SensitivityIrritable Bowel SyndromeDepressionAnxiety disordersSomatoform disordersThis can make diagnosis of ME/CFS and any coexisting conditions difficult.If a positive diagnosis of ME/CFS cannot bedetermined, then a specialist referral for furtherassessment would be appropriate.Furthermore, depression (and particularly reactivedepression) and anxiety may often co-exist withME/CFS.Nonetheless there are significant differencesbetween these overlapping entities. Unlikedepressed patients, ME/CFS sufferers are usuallyhighly motivated to do things. They suffer no lossof pleasure gained from usual daily activities andtheir self-esteem is intact.They exhibit post-exertional malaise in response tominimal effort, orthostatic intolerance and a rangeof cognitive impairments and other neurologicalsymptoms not usually associated with depression.ME/CFS sufferers also report bouts of ‘extremefrustration’ or situational depression because of therestrictions the condition places on their family,social and work place relationships.Exclusion CriteriaThe following is a sample of some other conditions(differential diagnosis) that may need exclusion:HypothyroidismHyperthyroidismDiabetes MellitusAddison’s diseaseCoeliac diseaseAnaemiaHaemachromatosisSystemic Lupus ErythematosusPolymyalgia RheumaticaSarcoidosisMultiple SclerosisParkinson’s diseaseSleep Apnoea SyndromeMyasthenia GravisRare myopathiesMalignancyHypercalcaemiaLyme diseaseChronic HepatitisHIV/AIDSFibromyalgiaMajor DepressionAnxiety DisordersSomatoform disordersDepression and ME/CFSSome of the symptoms seen in ME/CFS overlapsignificantly with those in other neuro-psychiatricdisorders such as depression and anxiety.6Fatigue is just one of a multitude of symptomsMyalgic Encephalopathy/Chronic Fatigue Syndrome Guidelines
EPIDEMIOLOGYME/CFS affects all social and ethnic groups.There is a predominance of females (2 to 1) and abimodal distribution with peaks between 15-20year olds and 33-45 year olds.The prevalence of ME/CFS varies between 0.2%and 0.5% of the total population. In SouthAustralia this translates to between 3,000 and7,000 cases at any one time.AETIOLOGY AND PATHO-PHYSIOLOGYThe causes of ME/CFS are not well understood.The patho-physiological basis of ME/CFS iscomplex because of the multi-system involvementand multiple symptoms of varying intensity.Further research is clearly needed to ascertain thecomplex patho-physiological basis of ME/CFS.The onset may be acute or gradual. There mayalso be a number of triggering factors present,such as an acute infection and / or significant lifeevents.Most of the ME/CFS research to date points tocentral nervous system dysfunction associatedwith autonomic, neuro-endocrine, neuropsychiatric and immunological disturbances.SPECT and PET scanning research hashighlighted hypo-perfusion and altered functionwithin deep structures of the brain, but theevidence is inconclusive.Myalgic Encephalopathy/Chronic Fatigue Syndrome GuidelinesAlterations to cell membrane functioning andaltered biochemical markers are also advocated,but again the evidence is not conclusive. However,neuromuscular performance in people withME/CFS had been shown to be normal.ME/CFS affects all social and ethnic groups.Further research is clearly needed to ascertainthe complex patho-physiological basis ofME/CFS.7
PATIENT EVALUATIONA positive diagnosis of ME/CFS is an importantfirst step in the management of this condition.Physical ExaminationThe diagnosis is based on recognising the patternof characteristic symptoms of ME/CFS andexcluding alternative diagnoses. An interimdiagnosis can be established within six monthsfrom the onset of symptoms to allow earlierintervention and management. If symptoms persistbeyond six months then the diagnosis can beconfirmed.Some patients may have tender lymph glands,localised tender points in muscles, restingtachycardia, low blood pressure or low bodytemperature.Often no significant abnormality is noted.The physical examination will also assist withexcluding other conditions.Mental State AssessmentHistoryThis is important in order to determine if other comorbidities exist. Reactive depression can oftenco-exist or interact with the patient’s ME/CFS.Many patients live in a depressing situationbecause of the severe restrictions on their home,work and social life.The history of the patient’s condition oftenprovides most of the information needed to makea diagnosis. Patients must be given sufficient timeto present a full account of their symptoms,factors that worsen or improve them and acomparison with previous healthy functioning.Useful questionnaires and other assessment toolsinclude:Mini-mental testNeuro-psychological testsDepression and Anxiety assessment toolsA positive diagnosis of ME/CFS is animportant first step in the management of thiscondition.For women, symptoms may worsen at certaintimes of the menstrual cycle (e.g. pre-menstrual),while pregnancy appears to alleviate symptoms insome women.Onset, duration and variability of symptoms overtime should be ascertained.The hallmark of ME/CFS is that increasedphysical or mental exertion results in worseningsymptoms, often with a delayed impact (i.e. it isfelt later the same day or next day), and lasting formore than 24 hours. Recovery from such relapsesmay take days, weeks or even months.8InvestigationsThere is no single abnormality that is specific forME/CFS, however the basic screening tests helpto exclude major non-ME/CFS causes of fatigue.Basic screening tests: CBP; ESR; MBA20;Fasting BSL; TSH; Urine analysis; Fe studies(for women).Further testing may be undertaken as clinicallyindicated to exclude other non-ME/CFS causes.Alternatively, seek specialist/expert support andadvice.Myalgic Encephalopathy/Chronic Fatigue Syndrome Guidelines
APPROACH TO MANAGEMENTAll treatment should be patient-centred andinvolve supportive counselling, lifestylemanagement and the setting of realistic goals.There is no known cure for ME/CFS.Management is geared at improving functionalityand symptom control through an effectivetherapeutic alliance between the patient and theirGP.For patients who are severely disabled, bed-riddenor not responding to the basic management asoutlined below, please consider referral to aspecialist or GP with expertise in the condition.All patients will require ongoing assessment,education, support and encouragement. Theyshould also have regular health checks for otherconditions. New symptoms may not be due toME/CFS and should be investigated further.Management is geared at improvingfunctionality and symptom control.Activity Management Budget physical and mental activity: Patients should gently and gradually increasetheir level of activity (e.g. gentle walking,hydrotherapy and stretching exercises). Patients should learn to set boundaries,prioritise activities, and pace themselveswithout overdoing it on a ‘good day’.Otherwise they risk triggering a relapse ofsymptoms. If it takes more than 30-60 minutes torecover from activity, then the patient isprobably overdoing it. Unless severely affected, it is importantthat patients avoid prolonged bed rest. A pedometer can help monitor progresswith increasing levels of activity. It may be useful to refer the patient to aphysiotherapist or occupational therapistfor further assessment and advice onactivity management.Myalgic Encephalopathy/Chronic Fatigue Syndrome GuidelinesSymptom Control Poor sleep: Basic sleep hygiene principles are veryimportant. Patients should avoid daytimenaps, try to get to bed at a reasonable hourat night and keep to a regular schedule. A low dose TCA (Tricyclic Antidepressant)such as amitriptyline, nortriptyline ordoxepin (5 to 25mg) may assist with sleep. Alternatives include St John’s Wort,valerian and doxylamine (e.g. Restavit,Docile). Hypnotics may be useful in establishingnormal sleep pattern, but their long-termuse should be avoided. Muscle aches and headaches: Low dose TCA’s, simple analgesics, and/oranti-inflammatories may help. Tramadol may help in some patients. For more severe pain consider painmanagement clinic assessment and advice. Anticonvulsants may be helpful in somecases. Muscle twitching or cramps: Consider muscle relaxants (e.g. diazepamor baclofen). Gastrointestinal symptoms: Some patients may need to exclude certainoffending foods (usually wheat and/ordairy products). For upper GI symptoms (bloating, nausea),patients should avoid offending foods andhave regular small meals. Avoid fluids onehour before, during and after meals,because of delayed gastric emptying ofliquids in ME/CFS patients. It might be useful to refer the patient to adietician, gastro-enterologist or allergist forfurther assessment.9
Orthostatic intolerance (low blood pressure/resting tachycardia): A simple heart monitor can help withfeedback when the heart rate indicatesexcessive response to minimal activity, andhence the need to reduce activity. Adequate hydration must be maintained. Pressure garments on lower limbs andabdomen might also help ambulation. Mood disorders (e.g. reactive depression andanxiety): Counselling is helpful in most cases. Cognitive Behaviour Therapy (CBT) by atrained psychologist or psychiatrist can beuseful for those not coping with theirillness and who may benefit from CBT.CBT assumes that what we think and doimpacts on any illness experience.Therefore, individuals can alter negativepatterns with help from trained therapists(e.g. CBT may assist with activitymanagement, sleep hygiene, goal settingand dealing with reactions to illness orrelapses). If medications are required, consider: StJohn’s Wort, Sertraline 50mg, Citalopram20mg, or Venlafaxine 75mg initially. Referral to a psychiatrist may also berequired for further assessment.Medication: Start with a low dose of anymedications since the usual doses are often poorlytolerated.Healthy eating and drinking: Patients may need to increase their proteinintake to say 35% (e.g. lean meat, chicken,fish, etc), eat low Glycaemic Indexcarbohydrates - up to 55%, and eat goodfats (at least 10%). Avoid alcohol, caffeine, and other foodsthat are not tolerated (e.g. that causeirritable bowel, nausea or bloating) orworsen their symptoms. A referral to a dietician may be required. Adequate daily intake of fluid is essential.Complementary therapies: Most patients with this condition will tryother therapies at some time and should beadvised to discuss these with their doctor.There is no evidence to suggest they arecurative, but there are some claims thatthey may assist with symptomatic relief. Patients have reported remedial benefitsfrom massage therapy, hydrotherapy andacupuncture, as well as from fish oils (e.g.Efamol Marine) and Magnesiumsupplements. If vitamin supplements are required onemultivitamin is often sufficient.Other General PrinciplesCarer support and education are essential.Avoid social withdrawal: Patients should beencouraged to keep up with social networking/support, even if only by telephone.Stress reduction techniques: (e.g. meditation andgentle massage therapy) are often helpful.Avoid or manage aggravators or triggers: (e.
Myalgic Encephalopathy/Chronic Fatigue Syndrome Guidelines 7 EPIDEMIOLOGY AETIOLOGY AND PATHO-PHYSIOLOGY The prevalence of ME/CFS varies between 0.2% and 0.5% of the total population. In South Australia this translates to between 3,000 and 7,000 cases at any one time. The causes of ME/CFS are not well understood. The patho-physiological basis .
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