Table 2.

Practical Recommendations for Energy Conservation and Management: Summary of ADLs to be evaluated in the bedbound patient and examples of corresponding activity modifications and adaptations that can be employed ¹.

ADL Domain/Tasks:	Recommendations, Including Modifications/Adaptations 2
Grooming/ Washing	Provide shower chair and grab bars. A transfer board can be used to transfer patients from the chair to the tub. Eliminate bathroom mats and rugs that pose a fall risk. Use a tub with a pillow/neck support. Elevate feet and begin with lukewarm water temperatures. Perform sponge bath bedside or in bed to conserve energy. Wash body parts at separate times (e.g., face one day, hair another). Use soaps with low fragrance and that are hypoallergenic. Use dry shampoo. Consider short hair. Examine skin integrity and look for any lesions while bathing. Rest immediately after washing and before dressing if needed. Wrap in blankets, dry towel, or robe and return to bed. Consider bathing every few days instead of daily. Consider remodeling bathrooms to increase accessibility.
Grooming/ Tooth Brushing	Conserve energy by performing activity in bed if needed. Use mild flavor paste or just water. Use a soft-bristle brush. If an electric toothbrush is used, choose one with control for vibration and intensity.
Grooming/ Dressing	Perform activity in bed, if needed to conserve energy. Use fragrance/chemical free laundry detergents. Wear loose fitting clothing made of soft, lightweight, breathable materials. Wear solid colors (no patterns) as these may be less stimulating. Consider adaptive clothing—e.g., slip on, no closures or buttons as these are easier to don (put on)/doff (take off). Don garment on the affected side (e.g., weakest, sorest) first, doff garment on the affected side last. Dress in stages. May not be able to complete all at once. Assess the cause of any sensitivity to clothes—e.g., small fiber neuropathy, contact dermatitis, etc. Change clothes for comfort/cleanliness, not necessarily daily.
Toileting	Use a raised toilet seat and install handrails near the toilet. If needed, a bedside commode can conserve steps for meaningful activity. Use adult diapers, bedpan or catheter when unable to transfer or maintain upright posture. If a catheter is needed, try condom catheters and/or intermittent catheterization first before using long-term in-dwelling catheters. Ask about and plan toileting on a scheduled basis. This can help decrease urgent visits and bladder/bowel accidents.
Feeding and Drinking	Assess whether a patient has food insecurity due to financial, transportation, preparation, or other problems and address as needed. If preparation is the issue, home delivery of meals and/or a supply of frozen or canned foods requiring minimal preparation can be critical, particularly when patients experience bad days. Prepare large quantities of food when able and store for future use. Provide foods that are nutritionally dense and do not need any/much preparation, such as shakes, bars, soft or liquid foods. Referral to a nutritionist may be needed. Provide a variety of snacks that can be easily accessed by the patient. Eat or drink in bed, if needed, to conserve energy. Less severely ill patients may prefer to have a meal(s) with their family for social interaction. Assist with feeding and managing the meal setup if needed. Use lightweight bowls, plates, and utensils (e.g., plasticware, bamboo or other lightweight materials). Use a small, lightweight cup. Use a short straw for less effort to suck. Use a non-spill water bottle or a hydration pack or bag (cut the length of the straw). May require tube feeding for nutrition and hydration or intravenous saline for hydration if oral nutrition and hydration is not adequate.
Positioning and Range of Motion	To protect the patient from pressure sores, joint contractures, skin and joint irritation, and poor alignment: Utilize wedges, bolsters, pillows for support and positioning or consider a specialized/adjustable bed to provide needed support. Switch the head/foot of bed (if needed and possible) to decrease repetitive movements and reaches. Utilize a reclining chair with footrest. Maintain proper neck and lumbar support for proper alignment (e.g., zero gravity chair, lounge chair). Educate caregivers about the need for regular, scheduled re-positioning as tolerated. Utilize passive or active range of motion to help avoid contractures and maintain some flexibility. This must be done in a way that it does not trigger PEM.
Environment/ Room Setup	To protect the patient from undue physical, cognitive, or emotional exertion: Provide a low sensory environment: ○ Hang black-out shades and/or plain curtains (no patterns); ○ Control room temperature and humidity; ○ Limit sounds from inside and outside the home to the extent possible; ○ Do not use products, such as cleaning supplies or perfumes, that have a strong smell. Provide assistive technology such as call buttons; remotes for light, fan and tv control; smart light bulbs (dim/color changing) with remotes; and wireless remote-control electrical outlet switches for fan/lights. Utilize a bedside table with adjustable height, tilt, and swivel top. For ease of reach, use “hook and loop” or similar technology to attach items to the wall and headboard and to position baskets with supplies/snacks/tools within reach. Use magnetic boards, bulletin boards or boards with symbols that people can point to as a communication aid. Assess balance issues, fall risks and hazards (stairs, rugs, home entry, etc.). Remove obstacles to keep pathways open and recommend other mitigation strategies as needed. Provide blankets, fans, and other warming and cooling devices if patients experience poor temperature regulation. If the patient needs to prepare their own meals, organize the kitchen for safety and energy conservation, e.g., provide a stool, position most commonly used dishes and utensils for easy access, etc.
Mobility and Transfers	Provide transfer and mobility devices (e.g., Hoyer lift, slide boards, other assistive devices, wheelchairs, canes, walkers) as required. Use planned, controlled, and slow position changes, especially for people affected by orthostatic intolerance or hypersensitivity to touch. Consider installing a stairlift and/or moving the patient to a more accessible room. Use a wheelchair for transitions between rooms if required and possible. Teach caregivers how to move patients safely. Ask private (e.g., taxi, ride-share) and public (e.g., paratransit, ambulance, fire department) transport services about transport options.
Support and Socialization	Ensure the patient has adequate caregiver support. Help facilitate access to needed community resources. Consider the patient’s desire and need for socialization when recommending energy management approaches.
Medical Management and Emergency Preparedness	Recommend the patient or caregiver create and maintain a summary of their health issues (e.g., symptoms, sensitivities/allergies, cautions for medical services, etc. Tas), current medications (including over-the-counter drugs, supplements, vitamins, etc.), and physician contact information. Recommend advanced directives and a health care proxy for when the patient is unable to convey their intent. Assess emergency preparedness including emergency alert, fire extinguishers, safe exit route. Recommend the patient or caregiver maintain a pack with essential medicine, clothes, and supplies. Recommend emergency alert technology (iWatch, Life Alert, Alexa, etc.) and a cell phone with programmed numbers. Notify emergency services (fire department, police) of resident’s mobility concerns and identify the location as high priority for utility services.

¹ These recommendations are geared primarily to the bedbound ME/CFS patient but can be tailored as appropriate for patients who are homebound but not bedbound. ² Many of the recommendations address energy conservation and safety issues as these are of particular concern for the severe and very severe ME/CFS patient. For patients who do not have caregivers, the provider will also need to evaluate IADLs such as shopping, cooking, managing medications, and doing laundry and housework to assess the level of support needed [40].