ME/CFS in Children

Contrary to the myth that ME/CFS rarely attacks children, it does, and in significant numbers. In early community-wide outbreaks of ME/CFS, children were among the most frequently affected. In the Lyndonville, New York outbreak in 1985, Dr. David Bell noted that children younger than 18 years represented 30% of the total number of individuals affected.

In contrast to the adult population with ME/CFS, in which women predominate, the illness affects boys as often as girls. Dr. Bell reported a nearly equal gender distribution in his practice. He also reported that 45% of his pediatric patients have a family member ill with ME/CFS.

While, in most regards, ME/CFS in children is indistinguishable from ME/CFS in adults, there are some important differences. According to Dr. Bell, the pattern of onset seems to be more age related in children. In children between the age of eight years and the onset of puberty, ME/CFS usually develops gradually. After puberty, ME/CFS generally begins with acute onset of symptoms, usually resembling the flu or mononucleosis.

In children younger than eight years old, ME/CFS is difficult to diagnose because of the diffuse, transient nature of the symptoms. A very young child with ME/CFS may simply appear to suffer from repeated bouts of the flu. Although parents of children four, five, and six years of age have reported ME/CFS symptoms in their children, most clinicians will not venture to make a diagnosis for a very young child.

Children with ME/CFS tend to experience more gastrointestinal problems (manifested as stomach aches) and flu-like symptoms (sore throat and swollen glands). Children also tend to experience all symptoms with equal severity. Dr. Bell noted that, whereas adults generally report certain symptoms as consistently more severe than others, children can experience severe headaches and stomach aches one day, severe leg pains and insomnia on the next, and severe joint pains on the third.

The International Association of Chronic Fatigue Syndrome Working Group devised a specific pediatric case definition for ME/CFS that encompasses the unique characteristics of children with this illness. The primary differences between the adult case definition of ME/CFS and the pediatric definition are as follows:

  • The pediatric definition only requires three months of ongoing symptoms
  • Physical symptoms, such as dizziness, pain and flu-like symptoms predominate
  • Sudden onset is not included (up to 25% of children have insidious onset)
  • Cognitive impairment is emphasized

In addition, children have all the adult manifestations of the illness: headaches, GI symptoms, sleep disturbance, light sensitivity, and pain. It should be stressed that in children with ME/CFS most of these symptoms will occur in clusters and will be difficult to distinguish from what doctors routinely refer to as “just a virus.”

 

DIAGNOSIS

Most pediatricians cannot make the diagnosis of ME/CFS unless they have had experience with the illness. Given the range of symptoms it is more likely that a pediatrician unfamiliar with the illness will make a diagnosis of childhood migraine, atypical epilepsy, school phobia, attention deficit disorder, rheumatoid arthritis, asthma, or irritable bowel syndrome (among others). The continuing widespread misconception that children don’t contract ME/CFS also makes securing a diagnosis difficult. If symptoms are severe and prolonged, the doctor will probably look for other causes. However, routine test results tend to be normal for most children with ME/CFS, although low sedimentation rate, slightly elevated white blood cell count, and low titers of antinuclear antibodies are common. As in the case of adults with ME/CFS, more complex immune system tests (natural killer cells, T and B cells) may reveal abnormalities.

The persisting attitude on the part of doctors and teachers that the child is “faking” symptoms for psychological reasons causes profound damage to children with ME/CFS. Misdiagnosing ME/CFS as school phobia, depression, or separation anxiety places the blame squarely on the shoulders of the child. When adults experience this kind of skepticism, they usually are able to defend themselves. Children are unable to do so; they depend on adults for information, explanations, sympathy, and advice. To throw disbelief in the face of a child who not only has all the physical symptoms of ME/CFS, but is terribly frightened and in profound need of reassurance is not only cruel, it is detrimental to the child’s future emotional growth.

Parents of a child with ME/CFS should keep in mind that even though school officials and doctors may attribute their child’s complaints to psychological causes, they seldom can back up their opinions. School phobia, for example, is a manifestation of separation anxiety. Children with separation anxiety display symptoms when anticipating separation, but which resolve when separation does not occur. In ME/CFS, symptoms are present not only during school hours, but after school and on weekends as well. Also, symptoms such as fever, lymph node pain, night sweats, and muscle and joint pain are not features of school phobia. Those who are apt to diagnose depression run into the same inconsistencies; lymph node pain and fever are not typical of depression. Children with ME/CFS can become depressed, but usually do so because no one believes they are ill. No study to date has revealed primary depression among children with ME/CFS.

Another difficulty parents may encounter is that some doctors insist that withholding the diagnosis of ME/CFS is better for the child. They argue that making the diagnosis will encourage self-identification as a “sick person.” This is a groundless argument. A sick child is aware that he or she is ill. Denying reality will only produce more emotional and psychological distress.

 

PROGNOSIS

The prognosis for the majority of children with ME/CFS is good. In Dr. Bell’s 13-year follow-up of children with ME/CFS, 80% had recovered. Most recover within three years, which, while for a child is a very long time, is relatively short compared to most adult cases. In some children, however, severe cases can last for many years. These cases are marked by neurological symptoms such as seizures, myoclonus, and paresthesias. Children with severe or long-term neurological symptoms need to be under the continuing care of a neurologist as well as a ME/CFS specialist.

Treatments for children with ME/CFS are more restricted than for adults and, as a consequence, clinicians tend to be somewhat more cautious in their approach. Dr. Bell, for example, does not recommend giving children many of the drugs commonly prescribed for adults, particularly antidepressants (personal communication, 1993). The justification for a more conservative approach is that the child’s neurological growth might be affected. Nor do most doctors recommend experimental ME/CFS treatments in children who have not finished growing.

 

TREATMENT

Many alternative treatments and supportive therapies can be beneficial for children. In fact, some of these therapies (herbs and vitamins, especially) have been more successful in children than in adults. Dr. Charles Lapp recommends valerian root (500 to 750 mg nightly) to help with insomnia. He also uses a mild antihistamine such as Benadryl (25 to 50 mg; a clear liquid is available for those with sensitivities to dyes), or Excedrin PM to help children sleep. Children also respond well to supportive therapies such as hydrotherapy, massage, and acupuncture.

 

COGNITIVE AND LEARNING PROBLEMS

Cognitive problems in childhood are particularly troubling because these are crucial years for intellectual development. Children with ME/CFS often experience difficulties in maintaining attention, retaining information, and focus. Often they lose confidence in their ability to learn. Dr. Linda Iger, a psychologist who has worked extensively on neurocognitive aspects of ME/CFS, outlined the following useful strategies to help children with ME/CFS cope with school tasks.

  • Limit periods of concentration. The average adult can concentrate for only 50 minutes at a stretch. Children with ME/CFS generally lose their ability to concentrate after about 20 minutes (or less, depending on the severity of the illness). Dr. Iger recommends that children time themselves to discover their concentration “ceiling,” or limit of concentration. Whatever that amount of time-whether it’s 5 minutes or 30-is the time that should be devoted to a single topic. When concentration wanes, Dr. Iger recommends taking a break for about 10 minutes. Children should get a glass of water, look out the window, or close their eyes and “kick back.” This work-rest pattern should be repeated twice, before taking a long break.
  • Use passive learning. Often, focusing on a topic makes it harder to absorb. Children with ME/CFS may find the task of learning new information easier if they don’t concentrate directly on it. For example, a random list of geographic features may be impossible to memorize if tackled directly. The same information is much easier to process if encountered in the form of a story or video. Your local library may have entertaining materials (PBS video series are particularly helpful) that would help the child absorb information indirectly.
  • Limit information. It is difficult for most people to remember long strings of facts or numbers. For people with ME/CFS the task is nearly impossible. Most children (and adults) with ME/CFS simply find themselves “going blank” after too much input. Try to limit information input to small increments. For example, a string of numbers such as 4358962 may be difficult to retain. When this set of numbers is broken up into two sets, for example, 435-8962, it is like a phone number. Sets of three and four numbers are much easier to retain than sets of seven digits. Try to use this strategy when faced with memorizing numbers or facts.
  • Eliminate distractions. Studying with music or television in the background is not a good idea for children with ME/CFS. The additional stimulus of music or talking makes it difficult to concentrate. Find a quiet, study place for them.
  • Reduce anxiety. Anxiety can have disastrous effects on attention span, focus, and retention. For this reason, many children with ME/CFS find themselves unable to take tests. Children who become anxious (for example, during a test) should practice deep-breathing and stress-reduction exercises. Self-hypnosis and meditation techniques can also be quite helpful.

It is still quite difficult to find pediatricians knowledgeable about ME/CFS. If you suspect your child has ME/CFS, it might be well worth the trip to consult with a specialist, in order to both confirm a diagnosis and devise a treatment plan best suited to your child’s symptoms and age. A pediatrician who is open-minded will follow the specialist’s recommendations. Having a supportive physician can make a world of difference to both the child with ME/CFS and his or her parents.

 

HOME MANAGEMENT

Children with ME/CFS spend the majority of their time at home with their families, which means that proper home management of ME/CFS is vital for recovery. The following management tips can help make the experience of having a chronic illness easier for everyone.

  • Provide Support and Understanding – Support and understanding are the most important aspects of helping a child with ME/CFS. It is important to show children that you believe them, that what they are feeling can be explained, and that you will do everything in your power to help them. Make sure your doctor demonstrates the same attitude.
  • Maintain Social Involvement – It is crucial for children with ME/CFS to maintain friendships, even if they are no longer in school. Brief play times for younger children or social visits for older children are essential to keep up flagging spirits. To prevent depression, don’t let your child become isolated.
  • Request Frequent Diagnostic Reevaluation – Some symptoms of ME/CFS are similar enough to those of anemia, heart, and lung disease to warrant reappraisal. There is one published case of a child who developed juvenile diabetes after the onset of ME/CFS. New or worsening symptoms should always be investigated.
  • Insist on Adequate Rest – The amount of activity a child with ME/CFS can sustain is greater than an adult’s. Children should be encouraged to be active, but not beyond their limits. An observant parent can judge a child’s limits by early warning signs such as paleness, darkness around the eyes, hyperactivity, talkativeness, restlessness, lethargy, crying and irritability, loss of appetite, and sensitivity to light and noise. All of these are signs that the child must rest immediately.
  • Provide Scholastic Support – Home tutors are useful, whether the child is being taught at home or in school. According to U.S. federal law, all children who are ill for more than a few weeks are eligible for tutoring by teachers from the public school district. (Public Law 94-142, the Education of All Handicapped Children Act of 1975, part of the Individuals with Disabilities Act.) The most recent amendments to the Individuals with Disabilities Education Act (IDEA) were passed by Congress in December 2004, with final regulations published in August 2006. A form must be filled out by your doctor to verify that the child is chronically ill. A tutor is then assigned to come to your house, usually three times a week. If the school district balks at sending a teacher, cite the law and threaten legal action. If tutoring through the public schools does not work out, many cities have volunteer tutoring programs for children who cannot attend school. Tutoring can be done by a teenager (if the child is younger), college students in education programs, or retired teachers. The child who is still attending school needs to rest during gym and study hall. Make sure to provide a note from your child’s doctor.
  • Keep a Regular Schedule – Stressors of any kind can worsen ME/CFS. To avoid as much physical stress as possible, make sure your child follows a fairly fixed schedule for eating, sleeping, and activities. Adjust his or her schedule accordingly during remissions, but remember that even if the child appears well, late bedtimes and overactivity can cause a relapse. This is not a good time to burden children with too many expectations or insist on competitive activities, however normal they may be for others in their age group.

Parents must walk a fine line between allowing normal activities, which are essential for a child’s growth and happiness, and excesses which provoke relapse. Learning to pace a child with ME/CFS is one of the most difficult tasks a parent can master, but it is well worth it in the long run. Eventually the child learns to pace him or herself. Let your child have fun, but keep an attentive eye on his or her limits.

 

A FINAL WORD

As you care for your child with ME/CFS, don’t forget to take care of yourself as well. Nothing is more heartbreaking than watching a child suffer. Seek out support groups, friends, and family members for moral support and take advantage of the resources available for children with long-term or disabling illnesses. For your child, you are the most important person in the world. Take good care of yourself.

 

ORGANIZATIONS

Center for Parent Information and Resources

This site provides information on national disability laws for children, including information on 504 plans, and IEPs. State resources are also included.

 

FURTHER READING

“Migraines in Children” William C Robertson, Jr, MD, Medscape.

Peter C. Rowe, Rosemary A. Underhill, Kenneth J. Friedman, Alan Gurwitt, Marvin S. Medow, Malcolm S. Schwartz, Nigel Speight, Julian M. Stewart8, Rosamund Vallings and Katherine S. Rowe. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer. Front. Pediatr., 19 June 2017. https://doi.org/10.3389/fped.2017.00121

Bell, David; Robinson, Mary; Pollard Jean; Robinson, Tom and Floyd, Bonnie. A Parent’s Guide to CFIDS: How to be an Advocate for Your Child with Chronic Fatigue Immune Dysfunction Syndrome. Binghamton, New York: Haworth Medical Press, 1999.

Jason, Leonard A, David S. Bell, Kathy Row, Elke L. S. Van Hoof, Karen Jordan, Charles Lapp, Alan Gurwitt, Teruhisa Miike, Susan Torres-Harding, Kenny De Meirleir. “A Pediatric Case Definition for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome.” Journal of Chronic Fatigue Syndrome; Haworth Medical Press; Vol. 13, No. 2/3, 2006, pp. 1-44.

Rowe, Peter. “Orthostatic Intolerance and CFS: New Light on an Old Problem.” The Journal of Pediatrics. Apri1 40(4) (2002):387-9.

Phenotypes of Chronic Fatigue Syndrome in Children and Young People – Source: Archives of Disease in Childhood, Apr 2009

Cognition In Young People With ME/CFS by Dr. R. Vallings January 2016
Practical advice from an ME/CFS expert. Dr. Vallings talks about a number of strategies that can be employed to help your child at school.

Diagnosing ME/CFS in Children: A Parent’s Perspective

The Young Persons’ ME/CFS Primer

Pacing and Management Guide for Pediatric ME/CFS and Long COVID

The ME Association Clinical & Research Guide 2022: Children & Adolescents – available as a free download. 

Your child or young person with ME/CFS or Long COVID and school. A guide to help your child get the most out of school.