Anorexia (appetite loss)

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

See also

Anorexia nervosa

the mental and behavioral illness which involves a refusal to eat combined with fears of being fat and other factors.

Prevalence

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.

Symptom recognition

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

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 or medication sensitivities
• irritable bowel syndrome is often comorbid with ME/CFS
• diarrhea
• gastroparesis can be caused by Ehlers-Danlos syndromes (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

Severe ME

Severe myalgic encephalomyelitis/chronic fatigue syndrome can also cause

• dysphagia (swallowing difficulties or an inability to swallow)

dysphagia is also found in some people after a stroke, in multiple sclerosis and Parkinson's diseases

• 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

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. 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.

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. He remains severely underweight and cannot speak.

Misdiagnosis

Swallowing and eating symptoms in ME/CFS can lead to the person becoming severely underweight; this can cause a misdiagnosis of anorexia nervosa 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.

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.

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

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

• ME - The Illness and Common Misconceptions: Abuse, Neglect, Mental Incapacity. A summary originally produced for the legal profession - The Young ME Sufferer's Trust
• Knowledge in the Hope of Protecting M.E. Sufferers from Unnecessary Sectioning - The Grace Charity for M.E. and The 25% ME Group

See myalgic encephalomyelitis.

See chronic fatigue syndrome.

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: viralzone.expasy.org)

myalgic encephalomyelitis (M.E.) - 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.

myalgic encephalomyelitis (M.E.) - 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: viralzone.expasy.org)