Definition of ME/CFS for Children: Checklist for Parents or Caregivers

 I.  Clinically evaluated, unexplained, persistent or relapsing chronic fatigue over the past 3 months that:

 ·        Is not the result of ongoing exertion

·         Is not substantially alleviated by rest

·         Results in substantial reduction in previous levels of educational, social and personal   activities

II. The concurrent occurrence of the following classic ME/CFS symptoms, which must have persisted or recurred during the past three months of illness. Symptoms may predate the reported onset of fatigue.

Post-exertional malaise and/or post-exertional fatigue.

With activity (it need not be strenuous and may include walking up a flight of stairs, using a computer, or reading  a book), there must be a loss of physical or mental stamina, rapid/sudden muscle or cognitive fatigability, post-exertional malaise and/or fatigue and a tendency for other associated symptoms within the patient’s cluster of symptoms to worsen. The recovery is slow, often taking 24 hours or longer.

Unrefreshing sleep or disturbance of sleep quantity or rhythm disturbance.

May include prolonged sleep (including frequent naps), disturbed sleep (e.g., inability to fall asleep or early awakening), and/or day/night reversal.

Pain (or discomfort) that is often widespread and migratory in nature.

At least one symptom from any of the following:

·         Muscle and/or joint pain

·         Abdominal pain, nausea, vomiting

·         Head pain/headache

·         Chest pain

·         Pain on sensory stimuli (light, noise or odors)

 Two or more neurocognitive manifestations:

·         Impaired memory

·         Difficulty focusing and concentrating

·         Difficulty finding the right word

·         Slowness of thought

·         Need to focus on one thing at a time

·         Trouble expressing thought

·         Difficulty comprehending information

·         Frequently lose train of thought

·         New trouble with math or other educational subjects

At least one symptom from two of the following three categories:

 Autonomic manifestations:

·         Neurally mediated hypotension

·         postural orthostatic tachycardia

·         delayed postural hypotension

·         palpitations

·         dizziness

·         shortness of breath

Neuroendocrine manifestations

·         Recurrent feelings of fever and chills

·         sweating episodes

·         cold extremities

·         worsening of symptoms with stress

Immune manifestations:

·         Recurrent flu-like symptoms

·         Sore or scratchy throat

·         Tender lymph

·         New sensitivities to foods or allergens

III.  Exclusionary conditions: Evaluation by a physician to exclude severe medical (e.g., lupus erythematosis, HIV, or multiple sclerosis) or psychiatric condition (drug abuse, psychosis, untreated severe eating disorder) that could cause the symptom pattern.

Note: Diagnosis of pediatric ME/CFS may co-exist with fibromyalgia, multiple chemical sensitivities, treated medical disorders and mild to moderate anxiety disorder or depression.

Source: Guidelines for the Diagnosis of Pediatric Chronic Fatigue Syndrome:

Things Parents Need to Know  David Bell , Elke van Hoof