Severe ME Resources
Modifications/ Adaptations

The clinical presentation of severe or very severe ME/CFS includes the features seen in those with milder disease, but some features are more prevalent, and all are much more extreme.

  • Profound weakness. May be unable to move or turn over in bed, eat, get to the toilet, etc.

  • Reduced or lack of ability to speak or swallow.

  • Severe and often almost constant, widespread pain, severe headaches, and hyperesthesia.

  • Extreme intolerance to small amounts of physical, mental, emotional, or orthostatic stressors such as sitting, bathing, toileting, eating, speaking. These can trigger post-exertional malaise and increased weakness.

  • Hypersensitivity, sometimes extreme, to light, sound, touch, chemicals, or odors. Exposure can increase pain and other symptoms.

  • Severe cognitive impairment that may impede the patient’s ability to communicate and understand written materials.

  • Severe gastrointestinal disturbances (e.g., nausea, abdominal pain), early satiety, and food intolerances which can impair adequate nutrition.

  • Orthostatic intolerance severe enough to prevent upright posture.

  • Sleep dysfunction such as unrefreshing sleep, shifted sleep cycles, and fractured sleep.

  • Increased prevalence of comorbidities common to ME/CFS (e.g., mast cell activation syndrome, postural orthostatic tachycardia syndrome) and/or complications of being homebound or bedbound (e.g., osteoporosis, constipation, pressure ulcers, aspiration pneumonia, depression, and deconditioning). These can increase disease burden and complicate management.

Compounding the physical debility, patients with severe or very severe ME/CFS are often isolated, sometimes from their own families, and must deal with the loss of their former lives and all that defined them. For those who became ill as children or young adults, that is particularly cruel.

Environment/Room Setup

To protect the patient from undue physical, cognitive, or emotional exertion:

  • 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.

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.

GROOMING

Washing

Provide shower chair and grab bars. 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.

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.

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.

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.

All these recommendations are from the National Library of Medicine Website
Recommendations on this page are geared primarily to the bedbound ME/CFS patient but can be tailored as appropriate for patients who are homebound but not bedbound. 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.

Referral to an Occupational Therapist or Physiotherapist is recommended for safety & equipment needs.

Positioning and Range of MotionTo 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.

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.

MedicalManagement andEmergency 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.