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Very severe myalgic encephalomyelitis or chronic fatigue syndrome
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{{stub}} '''Very severe myalgic encephalomyelitis''' or '''very severe chronic fatigue syndrome''' or '''very severe ME/CFS''' is a serious and profoundly disabling neurological disease. The level of disability in very severe ME/CFS causes severe restrictions on all aspects of everyday life. Hospital environments typically cause a significant increase in symptoms due to the sensory symptoms and lack of knowledge about the person's illness and needs. {{Main article|Severe and very severe ME}} ==NHS definition== Very severe ME/CFS People with very severe ME/CFS are in bed all day and dependent on care. They need help with personal hygiene and eating, and are very sensitive to sensory stimuli. Some people may not be able to swallow and may need to be tube fed.<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 very severe ME/CFS will have persistently severe symptoms, and typically a very large number of symptoms affecting multiple bodily systems. ==Advocacy == Patients with very severe ME are too ill to move independently and are totally reliant on carers. They are usually unable to advocate for themselves since many lose all ability to speak or understand speech. [[Paralysis]] is common and may fluctuate. Patients become vulnerable to medical neglect and abuse, including forced harmful treatment, which may be carried out with the best of intentions but still result in very serious harm or death. Clinicians may react with total disbelief and assume that the symptoms have another, more familiar cause, for example psychological disorders or [[Fabricated Induced Illness|fabricated induced illness]] (Munchausen's by proxy). ==People == *[[Emily Collingridge]] *[[Sophie Mirza]] *[[Whitney Dafoe]] *[[Linda Crowhurst]] ==See also == *[[Causes of death]] *[[Severe myalgic encephalomyelitis or chronic fatigue syndrome|Severe ME/CFS]] *[[Medical neglect and abuse]] *[[Myalgic encephalomyelitis]] *[[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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