Patient discussions
Explain that the primary goals of treatment are to manage symptoms and improve functional capacity; with symptom-oriented support, patients may experience improvements over time, or they may learn to better manage the effects of illness.[10]
The concept of an "energy envelope," as outlined by UK National Institute for Health and Care Excellence guidelines for ME/CFS, provides people with ME/CFS with a strategy to manage their exertional tolerance.[8][10] The energy envelope refers to the amount of energy that the patient has available to perform all of their daily activities.[184] The size of the energy envelope needs to be defined on a daily basis because resources and tolerance can vary from day to day and depending on other life stressors. Exceeding the energy envelope depletes these reserves and leads to post-exertional worsening of symptoms and of cognitive and physical functioning. The patient and practitioner can work together to recognize personal energy limits and set reasonable limits on activities.
People with ME/CFS may choose to take up the offer of an individualized activity plan developed in collaboration with knowledgeable and experienced professionals.[8][23] The activity plan must aim to minimize the negative effects of exertion on impaired aerobic function. Physical activity or exercise therapy should not take priority over activities of daily living, but should be designed to improve lifestyle habits and stamina, rebuild self-confidence, and definitely not cause iatrogenic post-exertional malaise.
People with ME/CFS commonly report sensitivities to light, noise, and odors and are often diagnosed with comorbid multiple chemical sensitivities. Therefore, it may be pertinent to discuss encouraging the following to limit impact of the environment on symptoms:
A perfume- and chemical-free environment
Use of eye masks and ear plugs
A referral to a specialist in cognitive behavioral therapy may also be helpful. It is important to highlight that the offer of psychosocial interventions does not reflect the belief that ME/CFS is of psychological etiology; psychosocial interventions should be offered with considerable care to avoid distress.[199]
The provision of reliable educational materials may be useful, and can help with empowering the patient for self-management. CDC: living with ME/CFS Opens in new window
Use of this content is subject to our disclaimer