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Anorexia (appetite loss)
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'''Anorexia''' is a physical symptom also known as '''appetite loss''' causing an inability to eat.<ref name="MosbyDictionary">{{Cite book | title = Mosby's Dictionary of Medicine, Nursing and Health Professions | pages = 102|isbn=978-0-7295-8691-7|edition=Revised 3rd Anz | volume = |language=en| title-link = | url = https://books.google.co.uk/books?id=z46ADwAAQBAJ&newbks=0&lpg=PA102&pg=PA102#v=onepage&f=true|access-date= | date = 2018| publisher = Elsevier Health Sciences|editor-last = Harris|editor-first = Peter|editor-link = |editor-last2 = Nagy|editor-first2 = Sue|editor-link2 = |editor-last3 = Vardaxis|editor-first3 = Nicholas|editor-link3=|veditors=|others=|doi=|oclc=|quote=|archive-url=|archive-date= |location=Australia}}</ref> {{See also description|1=the mental and behavioral illness which involves a refusal to eat combined with fears of being fat and other factors|2=Anorexia and eating disorders#anorexianervosa|3=Anorexia nervosa}} ==Prevalence== The prevalence of anorexia in people with ME/CFS is unknown. [[File:Whitney.JPG|350px|thumb|[[Whitney Dafoe]] is an American photographer with [[Severe_and_very_severe_ME#verysevere|very severe ME]], which causes him very severe [[digestive problems|gastrointestinal symptoms]], because of this he is severely underweight. Whitney can no longer speak, eat, or have contact with anyone but his parents due to [[Severe and very severe ME#verysevere|very severe ME]]. Whitney was previously [[misdiagnosis of myalgic encephalomyelitis and chronic fatigue syndrome|misdiagnosed]] with the eating disorder [[Anorexia_and_eating_disorders#anorexianervosa|anorexia nervosa]], which resulted in him being refused the surgery needing for a feeding tube and in-patient psychiatric care was recommended instead. Whitney has severe gastrointestinal symptoms rather than an eating disorder or appetite loss, and is now fed by a [[tube feeding|feeding tube]], is still unable to even drink water. He needs full time care.<ref name="Dafoe2021"/>]] ==Symptom recognition == Anorexia is recognized as a possible symptom in the [[Canadian Consensus Criteria]] for ME, but is not regarded as a diagnostic symptom.<ref name="canadianconsensus" /><ref name="ICC2011primer">{{citation | last1 = Carruthers | first1 = BM | author-link1 = Bruce Carruthers | last2 = van de Sande | first2 = MI | author-link2 = Marjorie van de Sande | last3 = De Meirleir | first3 = KL | author-link3 = Kenny de Meirleir | last4 = Klimas | first4 = NG | author-link4 = Nancy Klimas | last5 = Broderick | first5 = G | author-link5 = Gordon Broderick | last6 = Mitchell | first6 = T | author-link6 = Terry Mitchell | last7 = Staines | first7 = D | author-link8 = Donald Staines | last8 = Powles | first8 = ACP | author-link8 = A C Peter Powles | last9 = Speight | first9 = N | author-link9 = Nigel Speight | last10 = Vallings | first10 = R | author-link10 = Rosamund Vallings | last11 = Bateman | first11 = L | author-link11 = Lucinda Bateman | last12 = Bell | first12 = DS | author-link12 = David Bell | last13 = Carlo-Stella | first13 =N | author-link13 = Nicoletta Carlo-Stella | last14 = Chia | first14 = J | author-link14 = John Chia | last15 = Darragh | first15 = A | author-link15 = Austin Darragh | last16 = Gerken | first16 = A | author-link16 = Anne Gerken | last17 = Jo | first17 = D | author-link17 = Daehyun Jo | last18 = Lewis | first18 = DP | author-link18 = Donald Lewis | last19 = Light | first19 = AR | author-link19 = Alan Light | last20 = Light | first20 = KC | author-link20 = Kathleen Light | last21 = Marshall-Gradisnik | first21 = S | author-link21 = Sonya Marshall-Gradisnik | last22 = McLaren-Howard | first22 = J | author-link22 = John McLaren-Howard | last23 = Mena | first23 = I | author-link23 = Ismael Mena | last24 = Miwa | first24 = K | author-link24 = Kunihisa Miwa | last25 = Murovska | first25 = M | author-link25= Modra Murovska | last26 = Stevens | first26 = SR | author-link26 = 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><ref name="fukuda1994">{{Cite journal | last = Fukuda | first = K. | author-link = Keiji Fukuda | last2 = Straus | first2 = S.E. | author-link2 = Stephen Straus | last3 = Hickie | first3 = I. | author-link3 = Ian Hickie | last4 = Sharpe | first4 = M.C. | author-link4 = Michael Sharpe | last5 = Dobbins | first5 = J.G. | author-link5 = James Dobbins | last6 = Komaroff | first6 = A. | author-link6 = Anthony Komaroff | date = 1994-12-15 | title = The chronic fatigue syndrome: a comprehensive approach to its definition and study. International Chronic Fatigue Syndrome Study Group | url =https://www.researchgate.net/profile/Michael_Sharpe2/publication/247808895_The_Chronic_Fatigue_Syndrome_A_Comprehensive_Approach_to_Its_Definition_and_Study/links/0c96053201643bfc4b000000/The-Chronic-Fatigue-Syndrome-A-Comprehensive-Approach-to-Its-Definition-and-Study.pdf | journal=Annals of Internal Medicine | volume = 121 | issue = 12 | pages = 953β959|issn=0003-4819|pmid=7978722|via=| publisher = American College of Physicians}}</ref> ==Possible causes == While ME/CFS can cause significant appetite loss in some people, other ME/CFS symptoms may also cause changes in eating behaviors or significant weight loss include: * [[digestive problems]] * [[nausea]] * abdominal pain * new [[Food sensitivities|food or medication sensitivities]] * [[irritable bowel syndrome]] is often comorbid with ME/CFS * [[diarrhea]] * [[gastroparesis]] can be caused by [[Ehlers-Danlos syndrome]]s (EDS), and many people with EDS also have ME/CFS * [[mast cell activation syndrome]] (MCAS) and [[mast cell activation disorder]] (MCAD) are not uncommon in people with ME/CFS, and may cause food or medication intolerances, resulting in a person using a restricted diet to reduce symptoms<ref name="canadianconsensus" /><ref name="ICC2011primer" /> ==Severe ME == [[Severe and very severe ME |Severe myalgic encephalomyelitis/chronic fatigue syndrome]] can also cause * [[dysphagia]] (swallowing difficulties or an inability to swallow)<ref name="sectioning">{{Cite web |url = https://25megroup.org/download/2527/| title = Knowledge in the Hope of Protecting M.E. Sufferers from Unnecessary Sectioning | last = The Grace Charity for M.E. | author-link1 =The Grace Charity for M.E. | last2 =The 25% ME Group | author-link2 = 25 Percent ME Group | date = Jan 2019|quote =... the terrible act of sectioning sound minded M.E. patients who are neither a threat to themselves nor to others ...}}</ref> ::dysphagia is also found in some people after a stroke, in [[multiple sclerosis]] and [[Parkinson's disease]]s<ref name="swallowing">{{Citation | title = Drs. Byron Hyde and John Chia - Questions and Answers | page = 10|work=The Quarterly Newsletter | date =Summer 2018 | last = The 25% ME Group | author-link = 25 Percent ME Group|publisher =[[25 Percent ME Group]]|quote =Some M.E. specialist researchers believe that the gastric mucosa which is infected with enteroviruses may reach the brain by travelling up the vagus nerve, which controls the swallowing reflex.}}</ref> * [[vomiting]], which may be linked to [[vertigo]] * [[food sensitivities|food intolerances]], food or medication intolerances are found in approximately 50% of people with ME/CFS, and may become severe ::food intolerances may cause a reluctance to eat/swallow in severe cases<ref name="canadianconsensus">{{Cite book | last1 = Carruthers | first1 = Bruce M. | author-link1 = Bruce Carruthers | last2 = Jain | first2 = Anil Kumar | author-link2 = Anil Kumar Jain | last3 = De Meirleir | first3 = Kenny L. | author-link3 = Kenny De Meirleir | last4 = Peterson | first4 = Daniel L. | author-link4 = Daniel Peterson | last5 = Klimas | first5 = Nancy G. | author-link5 = Nancy Klimas | last6 = Lerner | first6 = A. Martin | author-link6 = Martin Lerner | last7 = Bested | first7 = Alison C. | author-link8 = Alison Bested | last8 = Flor-Henry | first8 = Pierre | author-link8 = Pierre Flor-Henry | last9 = Joshi | first9 = Pradip | author-link9 = Pradip Joshi | last10= Powles | first10 = AC Peter | author-link10 = A C Peter Powles | last11= Sherkey | first11 = Jeffrey A. | author-link11 = Jeffrey Sherkey | last12= van de Sande | first12 = Marjorie I. | author-link12 = Marjorie van de Sande | title = Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols | journal = Journal of Chronic Fatigue Syndrome | volume = 11 | issue = 2 | pages = 7-115 | date = 2003 |pmid = | doi = 10.1300/J092v11n01_02 | url = http://www.investinme.org/Documents/PDFdocuments/CanadianDefinitionME-CFS.pdf }}</ref> ==Feeding tubes == Some people severely affected by [[ME/CFS]] need a [[feeding tube]] or artificial nutrition, and may become severely underweight purely as a result of their ME/CFS symptoms, and may starve to death.<ref name="merryncrofts">{{Cite news | title =ME sufferer who was dismissed as hysterical vindicated in death| publisher = The Times | date = May 29, 2018| first =Lucy |last =Bannerman}}</ref> This is also the case for some people with anorexia or eating disorders. [[Merryn Crofts]] was bedbound and unable to eat when she died of [[Severe and very severe ME|very severe ME]]. Merryn relied on a feeding tube for nutrition, and weighed under six stone (84 lbs) at her death but she did not have an eating disorder; Merryn had severe [[digestive problems|gastrointestinal symptoms]] causing severe weight loss. Merryn's autopsy revealed [[Dorsal root ganglia|ganglia]] [[inflammation]]. It is suspected that in the later years of her illness Merryn also suffered from [[Ehlers-Danlos syndrome|EDS]] and [[Mast cell activation disorder|MCAD]]. Her death certificate is the second in the [[United Kingdom|UK]] publicly known to have been attributed to ME.{{Citation needed | date = February 2021}}<ref name="merryncrofts"/> [[Whitney Dafoe]], a patient with [[severe and very severe ME#verysevere|very severe ME]] who featured in the documentary [[Unrest]] relies on a feeding tube for all nutrition and cannot even drink water.<ref name="Dafoe2021"/> He remains severely underweight and cannot speak.<ref name="Dafoe2021"/> ==Misdiagnosis == Swallowing and eating symptoms in ME/CFS can lead to the person becoming severely underweight; this can cause a misdiagnosis of [[Anorexia_and_eating_disorders#anorexianervosa|anorexia nervosa]]<ref name="ME-misconceptions">{{Cite web | url = https://www.tymestrust.org/pdfs/metheillness.pdf | title=ME - The Illness and Common Misconceptions: Abuse, Neglect, Mental Incapacity. A summary originally produced for the legal profession | last = Colby | first = Jane | author-link = Jane Colby | date = | website = [[Tymes Trust]]| archive-url = | archive-date = |url-status = | access-date=Feb 25, 2019}}</ref> or another eating disorder, which may lead to inappropriate treatment. A number of patient groups have raised concerns that eating disorders including | [[Anorexia_and_eating_disorders#anorexianervosa|anorexia nervosa]] may be incorrectly diagnosed in some patients who actually have weight loss caused by ME/CFS symptoms, particularly in children, young people, and people with [[Severe and very severe ME|severe ME]].<ref name="ME-misconceptions" /> Some children with severe ME have been misdiagnosed with [[Pervasive Refusal Syndrome]], based on the assumption that they are refusing to eat, refusing to speak, and refusing to attend school or do normal activities.<ref name="Colby2017"/> {{See also|Misdiagnosis of myalgic encephalomyelitis and chronic fatigue syndrome}} ==Notable studies== There do not appear to be any significant studies assessing swallowing or eating issues in patients with ME/CFS, or investigating the presence of comorbid eating disorders, or the potential misdiagnosing of eating disorders, although there are many different accounts from patients or their carers/parents. * 2021, Extremely Severe ME/CFSβA Personal Account,<ref name="Dafoe2021">{{Cite journal | last = Dafoe | first = Whitney | author-link = Whitney Dafoe | date = 2021-04-27 | title = Extremely Severe ME/CFSβA Personal Account | url = https://www.mdpi.com/2227-9032/9/5/504/htm | journal = Healthcare|language=en | volume = 9 | issue = 5 | pages = 504|doi=10.3390/healthcare9050504|issn=2227-9032}}</ref> - [https://www.mdpi.com/2227-9032/9/5/504/htm (Full text)] *2007, Special problems of children with myalgic encephalomyelitis/chronic fatigue syndrome and the enteroviral link<ref name="Colby2017">{{Cite journal | last = Colby | first = J | author-link = Jane Colby | date = Feb 2007 | title = Special problems of children with myalgic encephalomyelitis/chronic fatigue syndrome and the enteroviral link | url =https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1860612/ | journal = Journal of Clinical Pathology | volume = 60 | issue = 2 | pages = 125β128|doi=10.1136/jcp.2006.042606|issn=0021-9746|pmc=1860612|pmid=16935964|access-date=|quote=|via=}}</ref> - [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1860612/ (Full text)] *[[Byron Hyde]] has started that [[enterovirus]]es may disrupt swallowing reflexes in ME/CFS.<ref name="swallowing" /> ==See more == *[[Digestive system]] *[[Ehlers-Danlos syndrome]] *[[Mast cell activation syndrome]] (MCAS) *[[Mast cell activation disorder]] (MCAD) *[[Severe and very severe ME]] *[[Anorexia and eating disorders]] *[[Psychologization]] *[[Ethical issues]] *[[Mental illness]] *[[Pervasive Refusal Syndrome]] ==Learn more == *[https://www.tymestrust.org/pdfs/metheillness.pdf ME - The Illness and Common Misconceptions: Abuse, Neglect, Mental Incapacity. ''A summary originally produced for the legal profession''] - The Young ME Sufferer's Trust *[https://25megroup.org/download/2527/ Knowledge in the Hope of Protecting M.E. Sufferers from Unnecessary Sectioning] - [[The Grace Charity for M.E.]] and [[25 Percent ME Group|The 25% ME Group]] ==References == {{Reflist}} [[Category:Digestive signs and symptoms]] [[Category:Signs and symptoms]]
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