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"[ME/CFS] has received most attention in the description of its devastating effects on previously healthy and productive adults.  But the disorder also affects children, and the consequences may be equally devastating."
-Dr. David S. Bell-

In 1985, in the small farming community of Lyndonville, NY, pediatrician David S. Bell, M.D. saw eight children from two families with a mysterious lingering viral illness.  These cases became part of the much larger historic Lyndonville epidemic of ME/CFS.  Thus began Dr. Bell's study of this mysterious disabling illness.  He soon realized the adults in the small community were also affected.  Dr. Bell has become known as the current world authority in the study of pediatric ME and CFS, as well as one of the leading authorities on ME and CFS in adults.  He also serves on the IACFS/ME Board of Directors, and is the past Chairman of the CFSAC.

Dr Bell's book, The Doctor's Guide to Chronic Fatigue Syndrome, has an extensive chapter on ME and CFS in children.  His chapter in Dr. Hyde's textbook, The Clinical and Scientific Basis of M.E./CFS entitled "Children with Myalgic Encephalomyelitis/ Chronic Fatigue-Immune Dysfunction Syndrome: Overview and Review of the Literature" describes the numerous ME and CFS epidemics throughout history that have documented this disease in children.  From this and other articles it appears that the prevalence rates of this disease in children are similar to those in adults.  If there are nearly a million adults in the US with this disease, most remaining undiagnosed, what does this mean for children?  Sadly, we don't fully know yet.  But there is hope.

Below you will find:
Info on the new Pediatric Case Definition for ME and CFS
A summary of other pediatric ME and CFS descriptions
CFS in Adolescents: Spectrum of Illness by Dr. David Bell (Introduction and link to full article)

There are several brief references to ME and CFS in children/adolescents in historic and  contemporary medical literature, but finally a comprehensive Pediatric Case Definition has recently been developed and published.  There have been very few ME and CFS studies involving children, in part because there have been no formal guidelines for research.  But now this new Pediatric Case Definition "is provided as a starting point for facilitating consistent research on pediatric ME/CFS."

Excerpted from:

TABLE 1. Definition of ME/CFS for Children

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

A. Is not the result of ongoing exertion
B. Is not substantially alleviated by rest
C. Results in substantial reduction in previous levels of educational, social and personal activities
D. Must persist or reoccur for at least three months

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).

A. 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.

B. 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.

C. Pain (or discomfort) that is often widespread and migratory in nature. At least one symptom from any of the following:

Myofascial and/or joint pain (Myofascial pain can include deep pain, muscle twitches, or achy and sore muscles. Pain, stiffness, or tenderness may occur in any joint but must be present in more than one joint and lacking edema or other signs of inflammation.)

Abdominal and/or head pain (May experience eye pain/sensitivity to bright light, stomach pain, nausea, vomiting, or chest pain. Headaches often described as localized behind the eyes or in the back of the head. May include headaches localized elsewhere, including migraines.)

D. Two or more neurocognitive manifestations:

·Impaired memory (self-reported or observable disturbance in ability to recall information or events on a short-term basis)
·Difficulty focusing (disturbed concentration may impair ability to remain on task, to screen out extraneous/excessive stimuli in a classroom, or to focus on reading, computer/work activity, or television programs)
·Difficulty finding the right word
·Frequently forget what wanted to say
·Absent mindedness
·Slowness of thought
·Difficulty recalling information
·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

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

1. Autonomic manifestations: Neurally mediated hypotension, postural orthostatic tachycardia, delayed postural hypotension, palpitations with or without cardiac arrhythmias, dizziness, feeling unsteady on the feet–disturbed balance, shortness of breath.

2. Neuroendocrine manifestations: Recurrent feelings of feverishness and cold extremities, subnormal body temperature and marked diurnal fluctuations, sweating episodes, intolerance of extremes of heat and cold, marked weight change-loss of appetite or abnormal appetite, worsening of symptoms with stress.

3. Immune manifestations: Recurrent flu-like symptoms, non-exudative sore or scratchy throat, repeated fevers and sweats, lymph nodes tender to palpitation– generally minimal swelling noted, new sensitivities to food, odors, or chemicals.

III. Exclusionary conditions:

A. Any active medical condition that may explain the presence of chronic fatigue, such as:

1. Untreated hypothyroidism
2. Sleep apnea
3. Narcolepsy
4. Malignancies
5. Leukemia
6. Unresolved hepatitis
7. Multiple Sclerosis
8. Juvenile rheumatoid arthritis
9. Lupus erythematosus
10. HIV/AIDS
11. Severe obesity (BMI greater than 40)
12. Celiac disease
13. Lyme disease

B. Some active psychiatric conditions that may explain the presence of chronic fatigue, such as:

1. Childhood schizophrenia or psychotic disorders
2. Bipolar disorder
3. Active alcohol or substance abuse–except as below:

a) Alcohol or substance abuse that has been successfully treated and resolved should not be considered exclusionary.

4. Active anorexia nervosa or bulimia nervosa–except as below:

a) Eating disorders that have been treated and resolved should not be considered exclusionary.

5. Depressive disorders

IV. May have presence of concomitant disorders that do not adequately explain fatigue, and are, therefore, not necessarily exclusionary.

1. Psychiatric diagnoses such as:

a) School phobia
b) Separation anxiety
c) Anxiety disorders
d) Somatoform disorders
e) Depressive disorders

2. Other conditions defined primarily by symptoms that cannot be confirmed by diagnostic laboratory tests, such as:

a) Multiple food and/or chemical sensitivity
b) Fibromyalgia

3. Any condition under specific treatment sufficient to alleviate all symptoms related to that condition and for which the adequacy of treatment has been documented.

4. Any condition, that was treated with definitive therapy before development of chronic symptomatic sequelae.

5. Any isolated and unexplained physical examination, laboratory or imaging test abnormality that is insufficient to strongly suggest the existence of an exclusionary condition.

[printable version]

Below, we briefly summarize the similarities and differences in pediatric and adult ME and CFS, and offer links to more extensive information.  Also below see the introduction to "Betrayal of the Severely Ill? Appendix 10: CFS In Adolescents: Spectrum of Illness" by Dr. David Bell.

Some other brief pediatric ME and CFS descriptions are summarized below:
●Drs. Hyde, Wallis, Behan & Behan
●Canadian Consensus Document for ME/CFS

Children and adolescents have a more difficult time articulating their symptoms, and therefore often remain undiagnosed, misdiagnosed or frequently accused of school phobia, avoidance behaviors or other psychological  behaviors.  Or parents are accused of exaggerating, sensationalizing or of even being psychotic themselves, when indeed the child is suffering from a debilitating physical illness, and the parent feels helpless and desperate that doctors cannot detect the cause or provide any useful advice when the child is so profoundly ill.  The fact that routine lab tests often appear normal is a poor excuse for a pediatrician to dismiss a child as school phobic or a parent as overindulging, and not to do more in depth labs.  (See the Test Abnormalities page, and the Links page for labs that do specialized testing.)

Most brief descriptions of children and adolescents with ME and CFS are similar:

● In his article, What is M.E.?  What is CFS?,  Dr. Byron Hyde summarized symptoms in children in a combined list from two separate publications, of A.L. Wallis and P.O. & W. Behan:

(1) Depression: This often occurred with weeping tendencies, and appeared early. Nearly all affected children are first diagnosed as hysterical, depression or "parental over-involvement".
(2) Loss of energy: This occurred in all but the mildest cases and frequently persisted.
(3) Retardation of thought processes: Work involving abstract thought was difficult to perform in all cases with protracted illness or recurrences. Serial seven test was poorly performed, often with errors, often starting the test well and then getting bogged down.
(4) Impairment of thought process: This was a common feature, and the contents of papers or magazines read only a few minutes earlier could not be recollected.
(5) Impairment of memory: Recent retention and recall - items of work to be done or purchases to be made - had to be listed as memorizing proved unreliable.
(6) Disorders of sleep: Inversion of sleep rhythm was common with nightmares in children, often with hallucinations on waking.
(7) Behaviour disorders: Temper tantrums were frequent in young children. In older children unsociability, lack of attention and effort on return to school was frequent. If behaviour was checked, children tended to weep. There is anxiety and clinging dependency, with a reluctance to attend school.
(8) Physical activities: There is a lack of interest in playing games with other children. When forced to attend school and take part in physical exercise, this has been followed by disastrous deterioration in the clinical condition, with overwhelming exhaustion and weakness supervening.
(9) Weight loss: A significant amount of body weight may be lost early in the disease process.
(10) Profound weakness: The weakness may be so severe that the child is confined to a wheel chair.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

● The Canadian Consensus Document includes a brief section on ME/CFS features in young people:

"Children may be diagnosed when suggestive symptoms last more than 3 months. Numerous symptoms may have similar severity but the hierarchy of severity differs more dramatically from day to day than in adults. Severe exhaustion, weakness, pain, and mood changes make life very challenging. Cognitive abilities deteriorate particularly in topics requiring analysis, multitask activities, fast-paced or confusing environments, and with physical and mental fatigue. Severely affected young people may be bedridden.  Because activity level is reduced by about 50% or more, young people have difficulty or are unable to maintain a full school program. Unlike school phobia, these young people spend most of their out-of-school time resting. 51% of British students with long term school absenteeism suffered from ME/CFS.  A supportive letter from the treating physician outlining the patient’s medical condition and limitations, and open communication between physician and school is helpful.  TEACH-ME: A Sourcebook for Teachers of Young People with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome and Fibromyalgia Syndrome, will assist teachers and parents in understanding symptoms in young people and provide strategies for educational planning and accommodations."

by Dr. David Bell

[In the full article, Dr. Bell presents pediatric 5 case studies, and the tragedy that accompanies children with this illness.]

Abstract
Chronic fatigue syndrome (CFS) has been documented to occur in children and adolescents, but there has been ongoing confusion concerning incidence, clinical manifestations, and severity. The majority of paediatricians believe that if CFS exists at all, it is a short lived, perhaps trivial condition, and a manifestation of psychiatric illness. Many paediatricians would argue that CFS should not be diagnosed in children because the diagnosis will "cause" the illness to persist. This underlying assumption concerning the trivial nature of CFS and the minor impact on a child's life are not consistent with natural history of the illness as seen by clinicians.

The assumption of the benign nature of paediatric CFS has resulted in little attention paid to children and adolescents with this illness, and no paediatric diagnostic criteria have been developed.  [Ed. note:  This article was published in 1998, but much of the information remains relevant today.] While it is possible that CFS can be mild and resolve completely in some young persons, there is a wide spectrum of illness severity, and severe cases exist. Five case histories of severe paediatric CFS are presented, each of which contradicts a commonly held belief about the illness, including severity, symptomatology and duration of illness. Through case presentations CFS can be seen as a serious, even life threatening illness, one that is not explained by psychiatric theory. The clinical course can cause severe functional limitation, pain and expose the child or adolescent to significant risks, such as the need for parenteral nutrition. The greatest emotional pain caused by the illness exists through the neglect or denial of both society and the medical profession.

There is an urgent need for increased attention to CFS among young persons. Studies concerning the clinical presentation, natural history, and long term prognosis should be undertaken. Specific diagnostic criteria should be developed [see new Pediatric Definition above], and clinicians should be educated to the possibility that CFS can extend into severe, perhaps lifelong, symptoms.  (See full article at AHMF.)