Anorexia and eating disorders

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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 started that enteroviruses may disrupt swallowing reflexes in ME/CFS.[18]

See also[edit | edit source]

Learn more[edit | edit source]

References[edit | edit source]

  1. "Anorexia Nervosa". National Eating Disorders Association. Feb 25, 2017. Retrieved Feb 25, 2019. 
  2. "Anorexia nervosa - Symptoms and causes". Mayo Clinic. Retrieved Feb 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. Feb 26, 2017. Retrieved Feb 25, 2019. 
  5. "Bulimia nervosa - Symptoms and causes". Mayo Clinic. Retrieved Feb 25, 2019. 
  6. "Binge Eating Disorder". National Eating Disorders Association. Feb 26, 2017. Retrieved Feb 25, 2019. 
  7. "Mental Health and Binge Eating Disorder". WebMD. Retrieved Feb 25, 2019. 
  8. "What is Orthorexia?". Retrieved Feb 21, 2021. 
  9. Hill, Amelia (Aug 15, 2009). "Pure food obsession is latest eating disorder". The Observer. ISSN 0029-7712. Retrieved Feb 25, 2019. 
  10. Bratman, Steven (Jan 23, 2014). "What is Orthorexia? | Orthorexia". Retrieved Feb 25, 2019. 
  11. "Other Specified Feeding or Eating Disorder". National Eating Disorders Association. Mar 21, 2017. Retrieved Feb 25, 2019. 
  12. 12.012.1 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. 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, A C 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. (Dec 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. Retrieved Feb 24, 2021. 
  16. 16.016.1
  17. Tymes Trust (2003). "Our Needs Our Lives" (PDF). 
  18. Cite error: Invalid <ref> tag; no text was provided for refs named swallowing

neuroendocrine relating to hormones that influence the nervous system

orthostatic intolerance (OI) - The development of symptoms when standing upright, where symptoms are relieved upon reclining. Patients with orthostatic intolerance have trouble remaining upright for more than a few seconds or a few minutes, depending upon severity. In severe orthostatic intolerance, patients may not be able to sit upright in bed. Orthostatic intolerance is often a sign of dysautonomia. There are different types of orthostatic intolerance, including postural orthostatic tachycardia syndrome (POTS).

myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

enterovirus A genus of RNA viruses which typically enter the body through the respiratory or gastrointestinal systems and sometimes spread to the central nervous system or other parts of the body, causing neurological, cardiac, and other damage. Since the first reports of myalgic encephalomyelitis (ME), enteroviruses have been suspected as a cause of ME. Enteroviruses have also been implicated as the cause of Type I diabetes, congestive heart failure, and other conditions. Enteroviruses include poliovirus, coxsackieviruses, and many others. New enteroviruses and new strains of existing enteroviruses are continuously being discovered. (Learn more:

National Academy of Medicine (NAM) - An American non-profit, non-governmental organization which provides expert advice to governmental agencies on issues relating to biomedical science, medicine and health. Formerly known as the Institute of Medicine (IOM).

The information provided at this site is not intended to diagnose or treat any illness.
From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history.