Anorexia (appetite loss)

From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history

Anorexia is a physical symptom also known as appetite loss causing an inability to eat.[1]

Prevalence[edit | edit source]

The prevalence of anorexia in people with ME/CFS is unknown.

Whitney Dafoe is an American photographer with very severe ME, which causes him very severe 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 very severe ME. Whitney was previously misdiagnosed with the eating disorder 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 feeding tube, is still unable to even drink water. He needs full time care.[2]

Symptom recognition[edit | edit source]

Anorexia is recognized as a possible symptom in the Canadian Consensus Criteria for ME, but is not regarded as a diagnostic symptom.[3][4][5]

Possible causes[edit | edit source]

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:

Severe ME[edit | edit source]

Severe myalgic encephalomyelitis/chronic fatigue syndrome can also cause

  • dysphagia (swallowing difficulties or an inability to swallow)[6]
dysphagia is also found in some people after a stroke, in multiple sclerosis and Parkinson's diseases[7]
  • vomiting, which may be linked to vertigo
  • 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[3]

Feeding tubes[edit | edit source]

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.[8] 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 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 gastrointestinal symptoms causing severe weight loss. Merryn's autopsy revealed ganglia inflammation. It is suspected that in the later years of her illness Merryn also suffered from EDS and MCAD. Her death certificate is the second in the UK publicly known to have been attributed to ME.[citation needed][8]

Whitney Dafoe, a patient with very severe ME who featured in the documentary Unrest relies on a feeding tube for all nutrition and cannot even drink water.[2] He remains severely underweight and cannot speak.[2]

Misdiagnosis[edit | edit source]

Swallowing and eating symptoms in ME/CFS can lead to the person becoming severely underweight; this can cause a misdiagnosis of anorexia nervosa[9] or another eating disorder, which may lead to inappropriate treatment.

A number of patient groups have raised concerns that eating disorders including | 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 ME.[9]

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.[10]

Notable studies[edit | edit source]

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/CFS—A Personal Account,[2] - (Full text)
  • 2007, Special problems of children with myalgic encephalomyelitis/chronic fatigue syndrome and the enteroviral link[10] - (Full text)
  • Byron Hyde has started that enteroviruses may disrupt swallowing reflexes in ME/CFS.[7]

See more[edit | edit source]

Learn more[edit | edit source]

References[edit | edit source]

  1. Harris, Peter; Nagy, Sue; Vardaxis, Nicholas, eds. (2018). Mosby's Dictionary of Medicine, Nursing and Health Professions (Revised 3rd Anz ed.). Australia: Elsevier Health Sciences. p. 102. ISBN 978-0-7295-8691-7.
  2. 2.0 2.1 2.2 2.3 Dafoe, Whitney (April 27, 2021). "Extremely Severe ME/CFS—A Personal Account". Healthcare. 9 (5): 504. doi:10.3390/healthcare9050504. ISSN 2227-9032.
  3. 3.0 3.1 3.2 Carruthers, Bruce M.; Jain, Anil Kumar; De Meirleir, Kenny L.; Peterson, Daniel L.; Klimas, Nancy G.; Lerner, A. Martin; Bested, Alison C.; Flor-Henry, Pierre; Joshi, Pradip; Powles, AC Peter; Sherkey, Jeffrey A.; van de Sande, Marjorie I. (2003). Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols (PDF). Journal of Chronic Fatigue Syndrome. 11. pp. 7–115. doi:10.1300/J092v11n01_02.
  4. 4.0 4.1 Carruthers, BM; van de Sande, MI; De Meirleir, KL; Klimas, NG; Broderick, G; Mitchell, T; Staines, D; Powles, ACP; Speight, N; Vallings, R; Bateman, L; Bell, DS; Carlo-Stella, N; Chia, J; Darragh, A; Gerken, A; Jo, D; Lewis, DP; Light, AR; Light, KC; Marshall-Gradisnik, S; McLaren-Howard, J; Mena, I; Miwa, K; Murovska, M; Stevens, SR (2012), Myalgic encephalomyelitis: Adult & Paediatric: International Consensus Primer for Medical Practitioners (PDF), ISBN 978-0-9739335-3-6
  5. Fukuda, K.; Straus, S.E.; Hickie, I.; Sharpe, M.C.; Dobbins, J.G.; Komaroff, A. (December 15, 1994). "The chronic fatigue syndrome: a comprehensive approach to its definition and study. International Chronic Fatigue Syndrome Study Group" (PDF). Annals of Internal Medicine. American College of Physicians. 121 (12): 953–959. ISSN 0003-4819. PMID 7978722.
  6. The Grace Charity for M.E.; The 25% ME Group (January 2019). "Knowledge in the Hope of Protecting M.E. Sufferers from Unnecessary Sectioning". ... the terrible act of sectioning sound minded M.E. patients who are neither a threat to themselves nor to others ...
  7. 7.0 7.1 The 25% ME Group (Summer 2018), "Drs. Byron Hyde and John Chia - Questions and Answers", The Quarterly Newsletter, 25 Percent ME Group, p. 10, 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.
  8. 8.0 8.1 Bannerman, Lucy (May 29, 2018). "ME sufferer who was dismissed as hysterical vindicated in death". The Times.
  9. 9.0 9.1 Colby, Jane. "ME - The Illness and Common Misconceptions: Abuse, Neglect, Mental Incapacity. A summary originally produced for the legal profession" (PDF). Tymes Trust. Retrieved February 25, 2019.
  10. 10.0 10.1 Colby, J (February 2007). "Special problems of children with myalgic encephalomyelitis/chronic fatigue syndrome and the enteroviral link". Journal of Clinical Pathology. 60 (2): 125–128. doi:10.1136/jcp.2006.042606. ISSN 0021-9746. PMC 1860612. PMID 16935964.