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Severe myalgic encephalomyelitis or chronic fatigue syndrome
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{{stub}} '''Severe myalgic encephalomyelitis''' or '''severe chronic fatigue syndrome''' or '''severe ME/CFS''' is a serious and extremely disabling neurological disease. Severe ME/CFS causes a '''very severe''' level of disability. {{Main article|Severe and very severe ME}} ==NHS definition== '''Severe ME/CFS''' People with [[severe and very severe ME|severe ME/CFS]] are unable to do any activity for themselves or can carry out minimal daily tasks only (such as face washing or cleaning teeth). They have severe [[cognitive dysfunction|cognitive difficulties]] and may depend on a [[wheelchair]] for mobility. They are often unable to leave the house or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed and are often extremely sensitive to light and sound.<ref name="ng206"/> The UK's [[National Health Service]] definition of severe and very severe ME/CFS can be found within the 2021 [[NICE guidelines]].<ref name="ng206">{{Cite web|url=https://www.nice.org.uk/guidance/ng206 | title = Myalgic Encephalomyelitis (or Encephalopathy)/Chronic Fatigue Syndrome:diagnosis and management. NICE guideline. | last=NICE Guideline Development Group | first = | authorlink = |publisher=[[National Institute for Health and Care Excellence]] | date = 2021-10-29}}</ref> ==International Consensus Criteria == <ref name="ICC2011primer">{{citation | last1 = Carruthers | first1 = BM | authorlink1 = Bruce Carruthers | last2 = van de Sande | first2 = MI | authorlink2 = Marjorie van de Sande | last3 = De Meirleir | first3 = KL | authorlink3 = Kenny de Meirleir | last4 = Klimas | first4 = NG | authorlink4 = Nancy Klimas | last5 = Broderick | first5 = G | authorlink5 = Gordon Broderick | last6 = Mitchell | first6 = T | authorlink6 = Terry Mitchell | last7 = Staines | first7 = D | authorlink7 = Donald Staines | last8 = Powles | first8 = ACP | authorlink8 = A C Peter Powles | last9 = Speight | first9 = N | authorlink9 = Nigel Speight | last10 = Vallings | first10 = R | authorlink10 = Rosamund Vallings | last11 = Bateman | first11 = L | authorlink11 = Lucinda Bateman | last12 = Bell | first12 = DS | authorlink12 = David Bell | last13 = Carlo-Stella | first13 = N | authorlink13 = Nicoletta Carlo-Stella | last14 = Chia | first14 = J | authorlink14 = John Chia | last15 = Darragh | first15 = A | authorlink15 = Austin Darragh | last16 = Gerken | first16 = A | authorlink16 = Anne Gerken | last17 = Jo | first17 = D | authorlink17 = Daehyun Jo | last18 = Lewis | first18 = DP | authorlink18 = Donald Lewis | last19 = Light | first19 = AR | authorlink19 = Alan Light | last20 = Light | first20 = KC | authorlink20 = Kathleen Light | last21 = Marshall-Gradisnik | first21 = S | authorlink21 = Sonya Marshall-Gradisnik | last22 = McLaren-Howard | first22 = J | authorlink22 = John McLaren-Howard | last23 = Mena | first23 = I | authorlink23 = Ismael Mena | last24 = Miwa | first24 = K | authorlink24 = Kunihisa Miwa | last25 = Murovska | first25 = M | authorlink25= Modra Murovska | last26 = Stevens | first26 = SR | authorlink26 = Staci Stevens | title = Myalgic encephalomyelitis: Adult & Paediatric: International Consensus Primer for Medical Practitioners | date = 2012| isbn = 978-0-9739335-3-6 | url = http://www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf}}</ref> ==Fluctuating level of symptoms == Symptoms may fluctuate in people with ME/CFS, but those with severe ME/CFS will not have any days with only mild symptoms, and regular work outside the home, even if part-time, will be impossible. Some people with severe ME/CFS will be able to leave home at times, but will be dependent on a wheelchair or mobility scooter. ==Invisible illness == ME/CFS is known as an invisible illness due to the lack of obvious physical signs of illness. However, the severity of severe ME/CFS may make their illness more obvious, for example a person in their 20s needing a mobility scooter or wheelchair, or someone in their 30s being unable to play with their young children, or relying on an elderly parent for personal care. People with severe ME/CFS may struggle to explain the severity of their illness: being "unable to get out of bed" may mean literally needing to be lifted out of bed by another person due to severe [[paresis|muscle weakness]]. Activities that are usually seen as relaxing or enjoyable may be strenuous or totally impossible with severe ME/CFS, for example having a bath, watching a movie, or talking to a friend by phone. Being unable to do everyday activities may be confused with a lack of interest in things and withdrawing from other people, which are symptoms of [[depression]], but with ME/CFS there is no lack of interest but a lack of ability instead. ==See also == *[[Moderate myalgic encephalomyelitis or chronic fatigue syndrome|Moderate ME/CFS]] *[[very severe myalgic encephalomyelitis or chronic fatigue syndrome|Very severe ME/CFS]] *[[Myalgic encephalomyelitis]] *[[Chronic fatigue syndrome]] *[[List of abnormal findings in chronic fatigue syndrome and myalgic encephalomyelitis]] *[[Ableism]] *[[Stigma and discrimination]] *[[Disability]] ==Learn more== ==References == {{Reflist}} [[Category:Severity definitions]] [[Category:Definitions]]
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