Monitoring
ME/CFS is a chronic medical condition, with a waxing and waning of symptoms and impairments. Long-term management with a single primary care physician is recommended. The National Institute for Health and Care Excellence recommends that adults with ME/CFS receive a review of their care and support plan in primary care at least once a year; review at least every 6 months is recommended for children and young people with ME/CFS. More frequent primary care reviews should be arranged as needed, with the interval dependent on the severity and complexity of symptoms, and the effectiveness of symptom management.[8] One strategy may be to provide counsel to patients every 3 months and to reassess them for other health issues and treatable diseases.
Primary care clinicians play a key role in management of patients with ME/CFS, typically retaining responsibility for long-term care and monitoring, in partnership with the ME/CFS specialist team in secondary care. A key role of the primary care clinician is to liaise with other health, social care, and educational professionals in response to specific evolving patient needs, and to facilitate access to resources in the community (e.g., physiotherapy, occupational therapy, dietetic support, and district nursing staff visits) as guided by disease severity and individual need.[10] Referral to the patient's named contact within the ME/CFS secondary care team may be required: for example, if new or deteriorating aspects of their condition develop.[8]
Emphasis is placed on maximising functional capacity and improving symptom management. Medications, unnecessary diagnostic and laboratory testing, and ongoing consultant referrals should be kept to a minimum. Patients should be periodically reassessed for depression as untreated and more severe levels of depression may lead to a slower treatment response.[213]
Patients should be routinely monitored for depression and encouraged to engage with personally meaningful activities and social supports. Where indicated, patients should be assisted in accessing appropriate mental health care. A suicide evaluation is standard practice for all patients who appear to be clinically depressed or highly stressed.
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