These Guidance Notes and the Evaluation Form are intended to help a GP assess whether a presenting patient has ME/CFS or some other cause of their Fatigue. It is recommended that this Form is forwarded with the patient’s notes if referral is planned.
[For more detailed information on the diagnosis of ME/CFS you may care to refer to Criteria and especially the Canadian Criteria]
The NICE guidelines generally suggest that an ME/CFS diagnosis should be considered after symptom duration of 6 months. But evidence suggests that early recognition and appropriate intervention can improve the outcome. Earlier referral to a specialist ME/CFS service, particularly where there is an obvious post-infection link, should be considered. It should be especially noted that pushing exercise in the early acute stage of ME in attempts to avoid “deconditioning” of the patient can potentially cause a significant worsening of the condition with long-term effects.
Note the specifics of ME/CFS fatigue and in particular the element of post-exertional malaise and /or fatigue with a pathological slow recovery pattern.
Note the specifics of ME/CFS sleep disturbance and the lack of restorative sleep.
Note the common neurological and cognitive problems encountered in ME/CFS and that muscle weakness is a common complaint.
A recent study at Glasgow Caledonian University (Prof. Lorna Paul and Dr Les Wood – “Evaluation of pain and therapeutic interventions”) suggests that pain in ME/CFS is an extremely common symptom and in particular, muscle pain. This is frequently severe and the most common sites of pain are the cervical spine, the anterior thighs, the lumbar spine and posterior calves.
If severe pain dominates, especially after trauma such as RTA or physical or emotional abuse, Fibromyalgia may be a more likely diagnosis.
Many ME/CFS patients develop a reduction in tolerance to alcohol. And an intolerance of / increased sensitivity to the effects of chemicals, drugs and various food components is common.
Other symptoms commonly seen which may help to suggest a positive ME/CFS diagnosis include-
An apparent disturbance of Autonomic NS functions, including: orthostatic intolerance, IBS, nausea, bladder dysfunction and palpitations.
Frequent immune System changes with increased susceptibility to recurrent infections, and also tender lymph glands and sore throats with symptom severity in proportion to the degree of perceived fatigue and ‘flu-like sensation.
Possible Neuroendocrinal Dysfunction, including: loss of thermostatic control.
Baseline investigation should include:-
FBC ESR/CRP Urea/ Creatinine and Electrolytes Calcium Liver and Thyroid function
CK Glucose Urinalysis
Consider autoantibody tests if symptoms suggest but not as a first line investigation.
Cortisol assay should be performed if there has been significant weight loss and a diagnosis of Adrenal Insufficiency considered.
Patients with active anorexia nervosa or bulimia nervosa are generally excluded from a positive ME/CFS diagnosis. Those patients with a history of eating disorder but with successful treatment and resolution should not be excluded from an ME/CFS diagnosis consideration.
Severe obesity (defined as a BMI greater than 40 in the Canadian Criteria) is considered to exclude an ME/CFS diagnosis. But if weight gain follows the onset of ME/CFS, the patient could still meet the clinical criteria.
Before reaching an ME/CFS diagnosis other causes of chronic fatigue and co-morbidities to be considered and excluded include:-
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Anaemia
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Coeliac Disease
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Chronic Infection (Lyme disease)
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Connective Tissue Disorders (Lupus)
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Immunodeficiency
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Malignancy
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Localising/ focal neurological signs
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Inflammatory arthritis
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Thyroid Disease
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Multiple Sclerosis
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Myasthenia Gravis
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Primary Sleep Disorder
Note that severe disabling fatigue is generally not a key symptom in Somatisation Disorder
When a history of very significant anxiety and depression exists, additional caution is required before reaching an ME/CFS diagnosis. Patients with major psychiatric illness with psychotic and manic features are generally excluded from a positive ME/CFS diagnosis. However, those patients with successful treatment and significant psychiatric symptom resolution should not be automatically excluded from an ME/CFS diagnosis.
Alcohol and substance abuse that has been successfully treated should not be considered exclusionary.
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