Wheelchair

Wheelchairs are mobility aids designed for people unable to walk, or who have considerable difficulty walking and/or standing, which may result from having ME/CFS. The wheelchair is also used worldwide as the international symbol for disability.

The mobility problems caused by ME/CFS are complex, and are not the result of excessive activity or lack of fitness and are not a severe form of normal tiredness. Attempting to increase activity levels through exercise has been shown to be harmful to most ME/CFS patients, and ineffective in the majority of other patients.

Self-propelled wheelchair
A self-propelled or manual wheelchair has very large rear wheels and is lightweight. The person sitting in the manual wheelchair uses their hands and arms to turn the wheels in order to move, although some may have lowered seating in order to use their feet to help them move. The person can grip either the handrims (push rims) that are fixed in parallel to the rear wheels, or the grip the tyres, although this is generally not recommended. The front wheels are small and are known as casters. Most self-propelled wheelchair have handles at the back to allow someone to help, for example by pushing up a ramp, slope, or over a step. Some self-propelled wheelchairs have power-assisted wheels fitted.

Power chair
A power chair or powered chair or electric wheelchair is typically moved by a joystick-type control used by the person sitting in the wheelchair, who controls the direction and speed. Power chairs cannot be pushed and are typically used by people unable to walk and/or stand, and are unable to use a self-propelled wheelchair. Power chairs are usually allowed in all indoor and outdoor areas including shops or public areas, although this may depend on their size or maximum speed. Powered chair should not be confused with mobility scooters, which do not have the same specialized seating (for example, no trunk support), and are not designed for full-time or indoor use. Mobility scooters are frequently used by people with a disability that limits their ability to walk, but in recent years have been increasingly used by able-bodied people.

Transit wheelchair
A transit wheelchair or attendant wheelchair cannot be moved by the person sitting in it, which means the person cannot move around independently; transit wheelchairs have small wheels and are moved by a carer or attendant who pushes the chair from behind. These wheelchairs are often provided for temporary use in airports, hospitals, in some supermarkets, or in very large public buildings where elderly or disabled people who have difficulty walking distances but can walk a limited distance may visit.

ME/CFS patients as wheelchair users
Severe ME/CFS is typically described as causing severe difficulty with walking and sometimes standing, to the degree that a wheelchair is needed, and these patients vary from being mostly housebound to fully bedbound. Around 25% of people with ME/CFS are severe at some point in their illness, and many rely on a wheelchair as a result.

Some people with moderate ME/CFS may depend on or benefit from a wheelchair, or may use other walking or mobility aids, because of their combination of symptoms.

Post-exertional malaise
Post-exertional malaise (PEM) is increasingly recognized as the hallmark symptom of ME/CFS, this means that patients suffer a relapse or crash when they exceed their limited energy limit.

The CDC states: "'During PEM, any ME/CFS symptoms may get worse or first appear, including difficulty thinking, problems sleeping, sore throat, headaches, feeling dizzy, or severe tiredness. It may take days, weeks, or longer to recover from a crash. Sometimes patients may be house-bound or even completely bed-bound during crashes.'"

Dr Mark Vink, a former marathon runner and international hockey player who now has severe ME states that walking the few steps from his bed to the toilet is only possible every 12 hours, due to the severe PEM it causes him.

Orthostatic intolerance
A significant proportion of ME/CFS patients have forms of orthostatic intolerance e.g., POTS, which can cause injuries or falls from fainting, in addition to tachycardia, dizziness and blurred vision.

Periodic paralysis
Patients with ME/CFS may experience episodes of paralysis, particularly affecting their legs and/or arms, making them unable to temporarily unable to walk. De Becker et al. (2001) conducted a large study of chronic fatigue syndrome patients, and found that 27.2% of patients meeting the Fukuda criteria and 33.2% of patients meeting the Holmes criteria for CFS experienced episodes of paralysis.

Crowhurst and Crowhurst (2013) surveyed patients with severe myalgic encephalomyelitis, and found yhat hypokalemic periodic paralysis was particularly common. Hypokalemic periodic paralysis is a form of temporary paralysis caused by a rapid drop in potassium levels in cells, which prevents the nervous system from transmitting the signals needed to move despite the fact that the spinal cord is not damaged. This paralysis can be caused by a number of different triggers including over-exertion, and patients may have normal potassium levels between attacks.

Muscle weakness
Muscle weakness or paresis is common in patients with CFS, De Becker et al. (2001) found that 84% of patients with CFS had muscle weakness, which for some patients can be severe and affect walking or the ability to self-propel in a wheelchair.

Notable studies

 * 2021, Pathophysiology of skeletal muscle disturbances in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) - (Full text)
 * 2020, Environmental accommodations for university students affected by myalgic Encephalomyelitis/Chronic fatigue syndrome (ME/CFS) - - (Full text)
 * 2017, Dangerous exercise. The detrimental effects of exertion and orthostatic stress in myalgic encephalomyelitis and chronic fatigue syndrome - (Full text)


 * 2015 - The Aerobic Energy Production and the Lactic Acid Excretion are both Impeded in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - (Full text)

News and articles

 * 2017, An illness observed: a conversation with Julie Rehmeyer - American Scientist
 * 2017, For patients with CFS, going to the bathroom is similar to running a marathon - Interview with Mark Vink

Learn more

 * Walking aids, wheelchairs and mobility scooters - NHS
 * Rules for users of powered wheelchairs and mobility scooters - UK Government Guidance
 * Inclusive mobility - UK Government document