Me_cfsguidelines.qxd

Canadian Diagnosis and Management Guidelines FM-CFS CANADA
Canadian Diagnosis and Management Guidelines FM-CFS Canada thanks Dr. Anil K. Jain and Dr. for their review of this Guide, which is based on their work with an International Panel of Experts that developed a widely respected Clinical Case Definition, Diagnostic and Treatment Protocol for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. W e also thank the National ME/FM Action Network which spearheaded the initiative to create the Clinical Definition, in particular, Lydia Neilson and Marjorie van de Sande, and we thank Health Canada for funding the work of the International Panel.
FM-CFS Canada acknowledges the support of the ME/CFS Society of South Australia, and their partners, the Government of South Australia, University of Adelaide, the Adelaide Western - Division of General Practice, and Human Services. They developed this guide, which with minor revisions and additions, has become this Canadian guide. FM-CFS Canada thanks these parties and Canadian designer, Carola Kern, for editing this publication. This Guide was created to provide a brief overview of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and we recommend the original Clinical Case Definition, Diagnostic and Treatment Protocol for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome for further information and These guidelines have been developed, where possible, by achieving consensus between practising clinicians. The rec- ommendations contained in these guidelines do not indicate an exclusive course of action, or serve as a standard of medical care. Variations, taking individual 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 up to date. The authors accept no responsibility for any inaccuracies, information perceived as misleading, or the success of any treatment regimen detailed in the guidelines.
The National Library of Canada Cataloguing-in-Publication entry: Myalgic encephalopathy (ME) and chronic fatigue syndrome (CFS): management guidelines for general practitioners.
This publication may be reproduced in whole or in part for work, study or training purposes, subject to the inclusion of an Any enquiries about or comments on this publication should be directed to: FM-CFS Canada (fm-cfs.ca) INTRODUCTION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 D EFINITION O F ME/CFS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Co-existing Conditions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Depression and ME/CFS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Exclusion Criteria . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 EPIDEMIOLOGY . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 AETIOLOGY A N D PAT H O-PHYSIOLOGY . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 PATIENT EVALUATION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 History and Examination . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Mental State Evaluation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Investigations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 C ANADIAN C LINICAL C RITERIA . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 AP P R O A C H TO M A N A G E M E N T . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9 PATIENT M ONITORING & SELF-MA N A G E M E N T . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11 C HILDREN A N D YO U N G PEOPLE . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11 BU R D E N O F ME/CFS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12 C ASE EXAMPLES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12 APPENDICES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13 Appendix 1: D AVID BELL CFS DISABILITY SCALE . . . . . . . . . . . . . . . . . . . . 13 TO B E DETERMINED . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . X X AC K N O W L E D G E M E N T S . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14 R EFERENCES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14 FU RT H E R IN F O R M ATION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15 Publications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15 Community Support Groups . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15 W ebsites . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a not uncommon medical Encephalomyelitis/Chronic Fatigue Syndrome and disorder that causes significant ill health and disabili- Patients with ME/CFS and FM can be clinically dif- It is now officially recognised by the World Health ferentiated on the basis of symptom balance in what Organization International Classification of Diseases.
some investigators believe are a variation of the ME/CFS is also known by other names such as Post W ith respect to symptoms, FM is at the extreme of the chronic pain spectrum, with lesser degrees of ME/CFS is characterised by severe, disabling fatigue and cognitive disturbance. ME/CFS is at the fatigue and post-exertional malaise. Other symptoms extreme end of the chronic fatigue spectrum but often involves significant cognitive dysfunction and ‹ Unrefreshing sleep or altered sleep patterns‹ It has been proposed that there are three groups of patients: those with pure FM, those with pure ME/CFS, and patients who meet the criteria for both ‹ Gastro-intestinal symptoms (e.g. irritable ‹ Orthostatic intolerance (e.g. low blood One study suggests approximately 75 percent of ME/CFS patients also meet the criteria for FM, but there is a much lower rate of FM patients who meet the criteria for ME/CFS. Some fibromyalgia patients A hallmark of the condition is that symptoms are usually worsened with minimal physical and mental Another important difference between FM and ME/CFS is in the response to exercise. Patients with Many medical practitioners are not confident in mild FM may be better able to tolerate exercise diagnosing and managing ME/CFS patients. This whereas it aggravates the symptoms in ME/CFS and may lead to a difficult doctor patient relationship, severely afflicted FM patients, who need alternate poor management of the condition and less than forms of exercise and a gentler progression.
adequate outcomes for patients (and their carers).
ME/CFS is officially recognised by the World Early intervention and positive diagnosis Myalgic Encephalopathy/Chronic Fatigue Syndrome Guidelines There are many definitions of ME/CFS. The Fukuda Nonetheless there are significant differences Criteria (1994) is still considered the international between these overlapping entities. Unlike benchmark for use in ME/CFS research, and is often depressed patients, ME/CFS sufferers are usually used as a de facto clinical definition. However many highly motivated to do things. They suffer no loss of see the criteria as being vague and over-inclusive pleasure gained from usual daily activities and their (e.g. Jason 2000). Furthermore, they downplay (i.e.
make optional) post-exertional malaise and other They exhibit post-exertional malaise in response to minimal effort, orthostatic intolerance and a range of The term Chronic Fatigue Syndrome may convey cognitive impairments and other neurological symp- the perception that sufferers are simply overtired.
toms not usually associated with depression. However, fatigue is just one of a multitude of ME/CFS sufferers also report bouts of extreme frustration or situational depression because of the The Canadian Expert Consensus Panel published restrictions the condition places on their family, the first diagnostic ME/CFS criteria for clinical use in social and work place relationships.
2003. In contrast to the Fukuda Criteria, this new definition made it compulsory that to be diagnosed New research in Canada presents biological mark- with ME/CFS, a patient must become symptomati- ers to differentiate depression from CFS.
cally ill after minimal exertion. It also clarified other neurological, neurocognitive, neuroendocrine, auto- nomic, and immune manifestations of the condition.
Exclusion CriteriaThe following is a sample of some other condi- A modified tick chart of the Canadian Clinical Criteria tions (differential diagnosis) that may need exclu- is included in this document It is recommended that it be used in the initial consultation to assist with the ME/CFS may coexist with or mimic symptoms asso- This can make diagnosis of ME/CFS and any coex- If a positive diagnosis of ME/CFS cannot be deter- mined, then a specialist referral for further assess- Some of the symptoms seen in ME/CFS overlap significantly with those in other neuro-psychiatric disorders such as depression and anxiety.
Furthermore, depression (particularly reactive depression) and anxiety may often co-exist with Fatigue is one of a multitude of symptoms.
Myalgic Encephalopathy/Chronic Fatigue Syndrome ME/CFS affects all social and ethnic groups.
There have not been any Canadian studies regard- ing the prevalence of ME/CFS in Canada, but inter- As in many arthritic diseases, it predominantly national estimates suggest that 80,000 - 100,000 affects females (85% of all patients). ME/CFS occurs most often between the ages of 35 and 50 years, but can affect all age groups, even children under The causes of ME/CFS are not well understood. The Alterations to cell membrane functioning and altered patho-physiological basis of ME/CFS is complex biochemical markers are also advocated, but again because of the multi-system involvement and multi- the evidence is not conclusive. However, neuromus- ple symptoms of varying intensity. Further research is clearly needed to ascertain the many-faceted performance in people with ME/CFS had been The onset may be acute or gradual. There may also be a number of triggering factors present, such as an acute infection and / or significant life events.
Most of the ME/CFS research to date points to ME/CFS affects all social and ethnic groups.
central nervous system dysfunction associated with autonomic, neuro-endocrine, neuropsychiatric and SPECT and PET scanning research has highlighted hypo-perfusion and altered function within deep structures of the brain, but the evidence is inconclu- Further research is clearly needed to ascer- tain the complex patho-physiological basis of Myalgic Encephalopathy/Chronic Fatigue Syndrome Guidelines A positive diagnosis of ME/CFS is an important first step in the management of this condition.
Often no significant abnormality is noted.
The diagnosis is based on recognising the pattern Some patients may have tender lymph glands, rest- of characteristic symptoms of ME/CFS and exclud- ing tachycardia, low blood pressure or low body tem- ing alternative diagnoses. An interim diagnosis can be established within six months from the onset of symptoms to allow earlier intervention and manage- The physical examination will also assist with ment. If symptoms persist beyond six months then This is important in order to determine if other comorbidities exist. Reactive depression can often coexist or interact with the patient s ME/CFS.
important first step in the management of Many patients live in a depressing situation because of the severe restrictions on their home, work and Useful questionnaires and other assessment tools The history of the patient s condition often provides most of the information needed to make a diagnosis.
Patients must be given sufficient time to present a ‹ Depression and anxiety assessment tools full account of their symptoms, factors that worsen or improve them and a comparison with previous Onset, duration and variability of symptoms over There is no single abnormality that is specific for ME/CFS, however the basic screening tests help to exclude major non-ME/CFS causes of fatigue.
For women, symptoms may worsen at certain times of the menstrual cycle (e.g. pre-menstrual), while pregnancy appears to alleviate symptoms in some Basic screening tests: CBP; ESA; Ca; P; Mg; The hallmark of ME/CFS is that increased physical or mental exertion results in worsening symptoms, often with a delayed impact (i.e. it is felt later the Further testing may be undertaken as clinically indi- same day or next day), and lasting for more than 24 cated to exclude other non-ME/CFS causes.
hours. Recovery from such relapses may take days, Alternatively, seek specialist/expert support and Myalgic Encephalopathy/Chronic Fatigue Syndrome A patient with ME/CFS will meet the criteria for fatigue, post-exertional malaise and/or fatigue, sleep dys- function, and pain; have two or more neurological/cognitive manifestations and one or more symptoms from two of the categories of autonomic, neuroendocrine and immune manifestations; adhering to item 7.
1) Fatigue: The patient must have a significant degree of new onset, unexplained, persistent, or recurrent physical and mental fatigue that sub- (At least one symptom in at least two of the 2. Post-Exertional Malaise and/or Fatigue: There is an inappropriate loss of physical and mental stam- ina, rapid muscular and cognitive fatigability, post exertional malaise and/or fatigue and/or pain and a tendency for other associated symptoms within the patient’s cluster of symptoms to worsen. There is a pathologically slow recovery period usually 24 hours 3) Sleep Dysfunction: There is unrefreshed sleep or sleep quantity or rhythm disturbances such as reversed or chaotic diurnal sleep rhythms.
4) Pain: There is a significant degree of myalgia.
Pain can be experienced in the muscles and/or joints, and is often widespread and migratory in nature. Often there are significant headaches of new (Two or more of the following criteria must be met) Loss of adaptability and tolerance for stress, slow recovery, and emotional lability.
categorizing, and work retrieval, including information, cognitive, and sensory overload (e.g. photophobia and hypersensitivity to noise) and/or emotional overload which may lead to 7) The illness persists for at least six months: NB: ME/CFS usually has an acute onset, but onset may also be gradual. A preliminary diagnosis may be possible in the early stages. The disturbances generally form symptom clusters that are often unique to a particular patient. The manifestations Myalgic Encephalopathy/Chronic Fatigue Syndrome Guidelines All treatment should be patient-centred and involve supportive counselling, lifestyle management and important. Patients should avoid daytime There is no known cure for ME/CFS. Management is naps, try to get to bed at a reasonable hour geared at improving functionality and symptom con- at night and keep to a regular schedule.
trol through an effective therapeutic alliance between A low dose TCA (Tricyclic Antidepressant) such as amitriptyline, nortriptyline or dox epin (5 to 25mg) may assist with sleep.
For patients who are severely disabled, bed-ridden Alternatives include St John s Wort, valerian or not responding to the basic management as out- and doxylamine (e.g. Restavit, Docile).
lined below, please consider referral to a specialist or GP with expertise in the condition.
normal sleep pattern, but their long-term All patients will require ongoing assessment, educa- tion, support and encouragement. They should also have regular health checks for other conditions. New symptoms may not be due to ME/CFS and should Low dose TCA s, simple analgesics, and/or For more severe pain consider pain manage Consider muscle relaxants (e.g. diazepam or Patients should gently and gradually increase their level of activity (e.g. gentle walking, hydrotherapy and stretching exercises).
Some patients may need to exclude certain Patients should learn to set boundaries, offending foods (usually wheat and/or dairy prioritise activities, and pace themselves For upper GI symptoms (bloating, nausea), Otherwise they risk triggering a relapse of patients should avoid offending foods and have regular small meals. Avoid fluids one hour before, during and after meals, because recover from activity, then the patient is of delayed gastric emptying of liquids in Unless severely affected, it is important that It might be useful to refer the patient to a dietician, gastro-enterologist or allergist for It may be useful to refer the patient to a physiotherapist or occupational therapist for further assessment and advice on activity Myalgic Encephalopathy/Chronic Fatigue Syndrome lOrthostatic intolerance (low blood pressure/ Patients may need to increase their protein A simple heart monitor can help with feed intake to say 35% (e.g. lean meat, chicken, back when the heart rate indicates excessive fish, etc), eat low Glycaemic Index carbohy response to minimal activity, and hence the drates - up to 55%, and eat good fats (at Adequate hydration must be maintained.
Avoid alcohol, caffeine, and other foods that are not tolerated (e.g. that cause irritable bowel, nausea or bloating) or worsen their A referral to a dietician may be required.
lMood disorders (e.g. reactive depression and Adequate daily intake of fluid is essential.
Counselling is helpful in most cases.
trained psychologist or psychiatrist can be Most patients with this condition will try useful for those not coping with their illness other therapies at some time and should be advised to discuss these with their doctor.
assumes that what we think and do impacts There is no evidence to suggest they are on any illness experience. Therefore, individ curative, but there are some claims that they uals can alter negative patterns with help from trained therapists (e.g. CBT may assist Patients have reported remedial benefits setting and dealing with reactions to illness Efamol Marine) and Magnesium supplements.
St John s Wort, Sertraline 50mg, Citalopram 20mg, or Venlafaxine 75mg initially.
Surgery: Patients undergoing surgery may avoid relapses if they are kept slightly overhydrated and are given oxygen supplementation post-operatively.
Travel: Patients often become exhausted with long- distance car or air travel (even as passengers).
Some patients have been able to tolerate air travel if they remain well hydrated and have in-flight oxygen supplementation (e.g. 2 to 3 litres/minute).
Avoid social withdrawal: Patients should be encouraged to keep up with social networking/sup- Pregnancy: ME/CFS is usually not adversely affected by pregnancy. However, exacerbations are Stress reduction techniques: (e.g. meditation and gentle massage therapy) are often helpful.
Avoid or manage aggravators or triggers: (e.g.
overexertion, surgery, anaesthetics, vaccinations, chemicals, air travel) that may cause relapses.
Medication: Start with a low dose of any medications since the usual doses are often poorly Myalgic Encephalopathy/Chronic Fatigue Syndrome Guidelines PATIENT M ONITORING A N D SELF M A N A G E M E N T It is important that ME/CFS sufferers set realistic ‹ Recording things that they have done, how goals, and monitor and record improvements in long it may take to do things, distances Patients should be encouraged to seek further ‹ Keeping a diary of treatments tried and information from appropriate websites/books (see Page X) and to participate in self-management ‹ Using the David Bell Disability scale to meas- ure progress from a subjective perspective.
Children and young people may be too unwell to appropriate to suggest exams be shortened in length attend their school or university for long periods of time. Home schooling is an option for some students. A letter of support to their educational insti- A referral to a paediatrician may also be appropriate.
tution could suggest restrictions to some activities - sporting and camp activities for example - as well as extra time to complete assignments or sit exams (with rest breaks). In some cases it may be more The prognosis for ME/CFS patients is variable. Most Still, a significant proportion of patients will remain will generally improve in functionality to some degree quite debilitated for longer periods of time.
However, symptoms may fluctuate or relapses may occur from time to time. Early intervention and positive diagnosis often result in a better prognosis.
Myalgic Encephalopathy/Chronic Fatigue Syndrome This condition can severely disrupt a person s social GPs can also assist with access to insurance pay- activities, study and/or productive work. ments, as well as early access to superannuation Many sufferers face significant social and economic funds where a patient faces financial hardship.
hardships. Their quality of life often diminishes more severely than in many other chronic illnesses. The Severely affected patients (those who are house or community costs in Canada are very high.
bed bound) may require home visits and assess- ments and the involvement of the other healthcare The impact on partners, other family members or professionals and social services. Respite care in carers can also be significant, with the potential to accepting institutions may be required from time to put relationships under strain. Support and coun- time. Very few research studies have been done selling for carers or family members are strongly rec- The case examples below have been adapted from.
Myalgic Encephalopathy/Chronic Fatigue Syndrome APPENDIX 1: DR . DAVID BELL S CFS DISABILITY SCALE Can be used by both patient and doctor to monitor Moderate symptoms at rest; moderate to severe symptoms with exercise or activity; overall level reduced to 50% - 70% of expected; not confined to No symptoms at rest; no symptoms with exercise; house; unable to perform strenuous duties; able to normal overall activity level; able to work fulltime perform light duty or desk work 3-4 hours a day but No symptoms at rest; mild symptoms with activity; Moderate to severe symptoms at rest; severe symp- normal overall activity level; able to work full-time toms with any exercise; overall activity level reduced to 50% of expected; usually confined to house; unable to perform strenuous tasks; able to perform desk work 2-3 hours a day, but requires rest periods.
Mild symptoms at rest; symptoms worsened by exer- tion; minimal activity restriction noted for activities requiring exertion only; able to work full-time with dif- Moderate to severe symptoms at rest; severe symp- toms with any exercise; overall activity level reduced to 30% - 50% of expected; unable to leave house except rarely; confined to bed most of day; unable to concentrate for more than 1 hour a day.
Mild symptoms at rest; some daily activity limitation clearly noted; overall functioning close to 90% of expected except for activities requiring exertion; able Severe symptoms at rest; bedridden the majority of the time; no travel outside of the house; marked cognitive symptoms preventing concentration.
Mild to moderate symptoms at rest; daily activity limitation clearly noted; overall functioning 70% - 90%; unable to work full-time in jobs requiring Severe symptoms on a continuous basis; bedridden physical labour, but able to work full-time in light constantly; unable to care for self.
From: The Doctor s Guide to Chronic Fatigue Moderate symptoms at rest; moderate to severe symptoms with exercise or activity; overall activity level reduced to 70% of expected; unable to perform strenuous duties, but able to perform light duty or desk work 4-5 hours a day, but requires rest periods.
Myalgic Encephalopathy/Chronic Fatigue Syndrome APPENDIX 1: POTENTIAL C AUSES O F AB N O R M A L FATIGUE Myalgic Encephalopathy/Chronic Fatigue Syndrome FM-CFS Canada thanks Dr. Anil P. Jain, and FM-CFS Canada acknowledges the support of the ME/CFS Society of South Australia, and this Guide, which is based on the more detailed and widely respected work they accomplished Australia, University of Adelaide, the Adelaide with an International Panel of Experts.
W estern - Division of General Practice, and The source material for this Guide came from They developed this guide and donated it to Definition, Diagnostic and Treatment Protocol FM-CFS Canada, and with minor revisions and for Myalgic Encephalomyelitis/Chronic Fatigue additions, it has become this Canadian guide.
Canadian designer, Carola Kern, for editing this Network which spearheaded the initiative to create the Clinical Definition, in particular, Lydia Neilson, Executive Director, and Education VP, Marjorie van de Sande, and we thank Health Syndrome: A Comprehensive Approach to Its Visit FM-CFS Canada to find patient groups and Definition and Study. Annals of Internal Medicine, 2. Jason, L.A. et al. Defining Chronic Fatigue Syndrome: Methodological Challenges. Journal of FM-CFS Canada, a source of this document, Chronic Fatigue Syndrome, Vol 7(3): 17-32, 2000.
the Clinical Working Case Definition, Diagnostic and 3. Carruthers, B. et al. ME/CFS: Clinical Working Treatment Protocols, and information on Canadian Case Definition, Diagnostic and Treatment Protocols.
4. Berne, K. et al. Chronic Fatigue Syndrome, Fibromyalgia and Other Invisible Illnesses The Comprehensive Guide. Hunter House Publish 2002.
Syndrome. Addison-Wesley Publishing Company, Myalgic Encephalopathy/Chronic Fatigue Syndrome Guidelines Myalgic Encephalopathy/Chronic Fatigue Syndrome Guidelines

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