Anorexia and eating disorders

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

Anorexia nervosa is a mental and behavioral disorder involving refusing or reducing food, distorted thoughts around eating or body weight for example fear of getting "fat" when underweight, and/or other thoughts and behaviors that lead to sufferer being significantly underweight.[1][2][3]

Other eating disorders include:

  • bulimia nervosa, which involves intentional vomiting or purging food to avoid weight gain;[4][5]
  • binge eating disorder,[6][7]
  • orthorexia: eating an extremely restricted diet based on fear of eating "unhealthy" foods,[8][9][10] and
  • other specified feeding or eating disorder (OSFED).[11]

Signs and symptoms[edit | edit source]

Treatment[edit | edit source]

Exclusion in ME/CFS diagnostic criteria[edit | edit source]

Eating disorders including anorexia nervosa can be extremely fatiguing, as can morbid obesity without an eating disorder. A pre-existing diagnosis of anorexia nervosa means that ME/CFS cannot be diagnosed, although an eating disorder could develop after onset of ME/CFS.[12][13][14][15]

Anorexia and ME/CFS[edit | edit source]

Anorexia nervosa and eating disorders are not common in people with ME/CFS. The symptom anorexia (appetite loss or abnormal appetite) is listed as a possible neuroendocrine of ME/CFS in the Canadian Consensus Criteria but is not regarded as a diagnostic symptom in ME/CFS.[13]

Children and "refusal" to eat[edit | edit source]

Some parents have reported that their child’s swallowing difficulties or vomiting have resulted in medical professionals interpreting these ME/CFS as an indicator of a mental disorder, for example some children originally diagnosed with chronic fatigue syndrome have had their diagnosis changed to Pervasive Refusal Syndrome because they were wrongly judged as "refusing" to eat, wash, or increase their activity levels.[16]

Our son’s main symptom was dizziness / orthostatic intolerance and abnormal gait which he adopted because of his dizziness. We were told that as neurological examination was normal there must be a psychological element to his problems (this was from a very eminent Consultant Paediatric Neurologist).

When we finally had to give in and admit him to hospital he was too weak to swallow his own saliva and had lost 20% of his body weight. Within 24 hours of admission he developed myoclonic jerks. We were asked whether he had a negative body image (ie was he anorexic) and whether we thought he was ‘putting on’ the muscle jerks. HELP! Please educate the Doctors and Nurses.

— From a family outside Essex, UK, Our needs, our lives (2003)[17]

Prevalence[edit | edit source]


Symptom recognition[edit | edit source]

Very little research has been published about eating disorders in people with ME/CFS. There is some awareness of anorexia nervosa and eating disorders being misdiagnosed in a few people with [[ME/CFS] who had symptoms that severely disrupt their ability to eat, their choices of food, or caused them to vomit very frequently.

Whitney Dafoe is an American photographer who has very severe ME, which causes him very severe gastrointestinal symptoms, because of this he is tube fed and remain severely underweight. Whitney can no longer speak, eat, or have contact with anyone but his parents due to visual dysfunction and very severe ME. Whitney was previously misdiagnosed with the eating disorder anorexia, which resulted in him being refused the surgery needing for a feeding tube and in-patient psychiatric care recommended instead. Whitney is now fed via a PEG, is still unable to even drink water, and he needs full time care.[citation needed]

Merryn Crofts was bedbound and unable to eat when she died of very severe ME at just 21 years old. Merryn weighed six stone (84 lbs) at her death but did not have an eating disorder, she had severe gastrointestinal symptoms causing 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]

Anorexia (meaning weight loss) is recognized as an optional diagnostic symptom in the Canadian Consensus Criteria for ME/CFS, but is not recognized in the later International Consensus Criteria for ME.[13][12] A number of patient groups have raised concerns that anorexia nervosa may be a misdiagnosis in some patients with ME, particularly children or young people, and the severely ill.[16]

Digestive symptoms problems are well recognized, particularly irritable bowel syndrome, and food intolerances, and are optional diagnostic criteria. Common ME/CFS symptoms which may cause changes in eating or weight include:

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.

Byron Hyde has stated that enteroviruses may disrupt swallowing reflexes in ME/CFS.[citation needed]

See also[edit | edit source]

Learn more[edit | edit source]

References[edit | edit source]

  1. "Anorexia Nervosa". National Eating Disorders Association. February 25, 2017. Retrieved February 25, 2019.
  2. "Anorexia nervosa - Symptoms and causes". Mayo Clinic. Retrieved February 25, 2019.
  3. 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.
  4. "Bulimia Nervosa". National Eating Disorders Association. February 26, 2017. Retrieved February 25, 2019.
  5. "Bulimia nervosa - Symptoms and causes". Mayo Clinic. Retrieved February 25, 2019.
  6. "Binge Eating Disorder". National Eating Disorders Association. February 26, 2017. Retrieved February 25, 2019.
  7. "Mental Health and Binge Eating Disorder". WebMD. Retrieved February 25, 2019.
  8. "What is Orthorexia?". Retrieved February 21, 2021.
  9. Hill, Amelia (August 15, 2009). "Pure food obsession is latest eating disorder". The Observer. ISSN 0029-7712. Retrieved February 25, 2019.
  10. Bratman, Steven (January 23, 2014). "What is Orthorexia? | Orthorexia". Retrieved February 25, 2019.
  11. "Other Specified Feeding or Eating Disorder". National Eating Disorders Association. March 21, 2017. Retrieved February 25, 2019.
  12. 12.0 12.1 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
  13. 13.0 13.1 13.2 13.3 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 (2): 7–115, doi:10.1300/J092v11n01_02
  14. 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.
  15. Institute of Medicine. "Systemic Exertional Intolerance Disease". Centers for Disease Control and Prevention. Retrieved February 24, 2021.
  16. 16.0 16.1
  17. Tymes Trust (2003). "Our Needs Our Lives" (PDF).