Wheelchair

From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history
A young girl wearing red and white sits in a manual wheelchair, holding a sign saying #Time for Unrest.
Aysha Lee, a young girl with ME/CFS, sits in her manual wheelchair, encouraging people to watch the film Unrest.
Photo by Emma Mizuno.

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.[1][2][3] The wheelchair is also used worldwide as the international symbol for disability.[4]

The mobility problems caused by ME/CFS are complex, and are not the result of excessive activity or lack of fitness[5][6] and are not a severe form of normal tiredness.[7][8] 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.[9][10]

Types[edit | edit source]

Self-propelled wheelchair[edit | edit source]

A self-propelled or manual wheelchair has very large rear wheels and is lightweight.[11][12] 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.[11] 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.[12][13] The front wheels are small and are known as casters.[14] 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.[14]

Power chair[edit | edit source]

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.[11][12][14] 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.[3] 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.[14] Powered chair should not be confused with mobility scooters,[13] which do not have the same specialized seating (for example, no trunk support), and are not designed for full-time or indoor use.[11][14][15] 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.[3]

Transit wheelchair[edit | edit source]

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.[15] 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.[15]

ME/CFS patients as wheelchair users[edit | edit source]

Severe ME/CFS is typically described as causing severe difficulty with walking and sometimes standing, to the degree that a wheelchair is needed,[2] and these patients vary from being mostly housebound to fully bedbound.[5][6] Around 25% of people with ME/CFS are severe at some point in their illness, and many rely on a wheelchair as a result.[5]

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.[2]

Post-exertional malaise[edit | edit source]

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.[16][17][2][6]

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."[6]

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.[18]

Orthostatic intolerance[edit | edit source]

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.[6]

Periodic paralysis[edit | edit source]

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.[19]

Crowhurst and Crowhurst (2013) surveyed patients with severe myalgic encephalomyelitis, and found yhat hypokalemic periodic paralysis was particularly common.[20] 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[edit | edit source]

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.[19]

Notable studies[edit | edit source]

  • 2021, Pathophysiology of skeletal muscle disturbances in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)[8] - (Full text)
  • 2020, Environmental accommodations for university students affected by myalgic Encephalomyelitis/Chronic fatigue syndrome (ME/CFS)[21] - - (Full text)
  • 2017, Dangerous exercise. The detrimental effects of exertion and orthostatic stress in myalgic encephalomyelitis and chronic fatigue syndrome[9] - (Full text)

News and articles[edit | edit source]

Clinicians[edit | edit source]

Risks and safety[edit | edit source]

Costs and availability[edit | edit source]

See also[edit | edit source]

Learn more[edit | edit source]

References[edit | edit source]

  1. ↑ "Walking aids, wheelchairs and mobility scooters". National Health Service. Retrieved March 25, 2022.
  2. ↑ 2.0 2.1 2.2 2.3 "Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)". National Health Service. Retrieved March 25, 2022.
  3. ↑ 3.0 3.1 3.2 "Inclusive mobility" (PDF). UK Government. Retrieved March 25, 2022.
  4. ↑ Fritsch, K. (November 15, 2013). "The Neoliberal Circulation of Affects: Happiness, accessibility and the capacitation of disability as wheelchair". Health, Culture and Society. 5 (1): 135–149. doi:10.5195/hcs.2013.136. ISSN 2161-6590.
  5. ↑ 5.0 5.1 5.2 NICE Guideline Development Group (October 29, 2021). "Myalgic Encephalomyelitis (or Encephalopathy)/Chronic Fatigue Syndrome:diagnosis and management. NICE guideline". National Institute for Health and Care Excellence.
  6. ↑ 6.0 6.1 6.2 6.3 6.4 {{Cite web|url = https://www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/index.html | title = Presentation and Clinical Course of ME/CFS | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|website=Centers for Disease Control and Prevention|access-date=2022-03-25}q}
  7. ↑ Timblin, Dianne (May–June 2017), "An illness observed: a conversation with Julie Rehmeyer", American Scientist, 105 (3)
  8. ↑ 8.0 8.1 Wirth, Klaus J.; Scheibenbogen, Carmen (April 21, 2021). "Pathophysiology of skeletal muscle disturbances in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)". Journal of Translational Medicine. 19 (1): 162. doi:10.1186/s12967-021-02833-2. ISSN 1479-5876. PMC 8058748. PMID 33882940.
  9. ↑ 9.0 9.1 Twisk, Frank N.M. (2017). "Dangerous exercise. The detrimental effects of exertion and orthostatic stress in Myalgic Encephalomyelitis and chronic fatigue syndrome" (PDF). Physical Medicine and Rehabilitation Research. 2 (1). doi:10.15761/pmrr.1000134. ISSN 2398-3353.
  10. ↑ Oxford Clinical Allied Technology and Trials Services Unit (OxCATTS) (February 27, 2019). "Evaluation of a survey exploring the experiences of adults and children with ME/CFS who have participated in CBT and GET interventional programmes. FINAL REPORT" (PDF).
  11. ↑ 11.0 11.1 11.2 11.3 Owens J, Davis DD (May 9, 2021). Seating And Wheelchair Evaluation. Treasure Island (FL): StatPearls Publishing.
  12. ↑ 12.0 12.1 12.2 Giesbrecht, Edward M.; Ripat, Jacqueline D.; Quanbury, Arthur O.; Cooper, Juliette E. (January 1, 2009). "Participation in community-based activities of daily living: Comparison of a pushrim-activated, power-assisted wheelchair and a power wheelchair". Disability and Rehabilitation: Assistive Technology. 4 (3): 198–207. doi:10.1080/17483100802543205. ISSN 1748-3107. PMID 19241234.
  13. ↑ 13.0 13.1 Ripat, Jacquie; Sibley, Kathryn M.; Giesbrecht, Ed; Curtis, Brittany; Touchette, Alexie; Borisoff, Jaimie; Ethans, Karen; Li, Yue; Morales, Ernesto (March 1, 2020). "Winter Mobility and Community Participation Among People Who Use Mobility Devices: A Scoping Review". Archives of Rehabilitation Research and Clinical Translation. 2 (1): 100018. doi:10.1016/j.arrct.2019.100018. ISSN 2590-1095.
  14. ↑ 14.0 14.1 14.2 14.3 14.4 Velho, Raquel; Holloway, Catherine; Symonds, Andrew; Balmer, Brian (June 7, 2016). "The Effect of Transport Accessibility on the Social Inclusion of Wheelchair Users: A Mixed Method Analysis". Social Inclusion. 4 (3): 24–35. doi:10.17645/si.v4i3.484. ISSN 2183-2803.
  15. ↑ 15.0 15.1 15.2 Davies, Andrew; Christie, Nicola (July 1, 2017). "An exploratory study of the experiences of wheelchair users as aircraft passengers – implications for policy and practice". IATSS Research. Safe and Sustainable Transport for All. 41 (2): 89–93. doi:10.1016/j.iatssr.2017.05.003. ISSN 0386-1112.
  16. ↑ 16.0 16.1 Vink, Mark (September 10, 2015). "The Aerobic Energy Production and the Lactic Acid Excretion are both Impeded in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Journal of Neurology and Neurobiology ( ISSN 2379-7150 ). 1. doi:10.16966/2379-7150.112.
  17. ↑ Vink, Mark; Vink-Niese, Alexandra (September 20, 2019). "Work Rehabilitation and Medical Retirement for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients. A Review and Appraisal of Diagnostic Strategies". Diagnostics. 9 (4): 124. doi:10.3390/diagnostics9040124. ISSN 2075-4418.
  18. ↑ de Visser, Ellen (October 3, 2017). "For patients with CFS, going to the bathroom is similar to running a marathon". Anil van der Zee. Retrieved December 29, 2018.
  19. ↑ 19.0 19.1 De Becker, Pascale; McGregor, Neil; De Meirleir, Kenny (December 2001). "A definition‐based analysis of symptoms in a large cohort of patients with chronic fatigue syndrome". Journal of Internal Medicine. 250 (3): 234–240. doi:10.1046/j.1365-2796.2001.00890.x.
  20. ↑ Crowhurst, Greg; Crowhurst, Linda (August 8, 2013). "Paralysis, a qualitative study of people with Severe Myalgic Encephalomyelitis". Stonebird. Retrieved December 28, 2018.
  21. ↑ Chu, Lily; Fuentes, Lynn R.; Marshall, Olena M.; Mirin, Arthur A. (January 1, 2020). "Environmental accommodations for university students affected by Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)". Work. 66 (2): 315–326. doi:10.3233/WOR-203176. ISSN 1051-9815.

post-exertional malaise (PEM) - A notable exacerbation of symptoms brought on by small physical or cognitive exertions. PEM may be referred to as a "crash" or "collapse" and can last for days or weeks. Symptoms can include cognitive impairments, muscle pain, trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, and others.

post-exertional malaise (PEM) - A notable exacerbation of symptoms brought on by small physical or cognitive exertions. PEM may be referred to as a "crash" or "collapse" and can last for days or weeks. Symptoms can include cognitive impairments, muscle pain, trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, and others.

See post-exertional malaise.

flare-up A symptoms flare in ME/CFS is a temporary increase in symptoms, alternatively known as experiencing post-exertional malaise. May be referred to as a "crash" or "collapse".

See post-exertional malaise.

flare-up A symptoms flare in ME/CFS is a temporary increase in symptoms, alternatively known as experiencing post-exertional malaise. May be referred to as a "crash" or "collapse".

orthostatic intolerance (OI) - The development of symptoms when standing upright, where symptoms are relieved upon reclining. Patients with orthostatic intolerance have trouble remaining upright for more than a few seconds or a few minutes, depending upon severity. In severe orthostatic intolerance, patients may not be able to sit upright in bed. Orthostatic intolerance is often a sign of dysautonomia. There are different types of orthostatic intolerance, including postural orthostatic tachycardia syndrome (POTS).

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

NICE guidelines Clinical guidelines used in the UK.

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