Anorexia and eating disorders

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.

Other eating disorders include:
 * bulimia nervosa, which involves intentional vomiting or purging food to avoid weight gain;
 * binge eating disorder,
 * orthorexia: eating an extremely restricted diet based on fear of eating "unhealthy" foods,  and
 * other specified feeding or eating disorder (OSFED).

Exclusion in ME/CFS diagnostic criteria
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.

Anorexia and ME/CFS
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.

Children and "refusal" to eat
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.

Prevalence
Unknown.

Symptom recognition
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 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.

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.

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. 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.

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:
 * digestive problems
 * nausea
 * abdominal pain
 * new food or medication sensitivities
 * irritable bowel 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.

Byron Hyde has stated that enteroviruses may disrupt swallowing reflexes in ME/CFS.

Learn more

 * KNOWLEDGE IN THE HOPE OF PROTECTING M.E. SUFFERERS FROM UNNECESSARY SECTIONING - The 25% ME Group


 * ME - The Illness and Common Misconceptions: Abuse, Neglect, Mental Incapacity. A summary originally produced for the legal profession - Tymes Trust