Of all those who contract ME/CFS, adolescents are hit the hardest. Unlike adults, who have achieved independence, or children, who are still dependent on their families, ME/CFS forces teens into a situation in which they can never achieve the independence that they strive for. Nor can they completely rely on their families, because adolescence is a time in which social groups have more importance than at any other time in life. Teens establish their identities in terms of what their peers think of them. Adolescence is also a time in which young adults look ahead to college, training for a career and the fulfillment of dreams. Nothing is more tragic than when a promising future is taken away.
Because they are more self-aware, teens can describe what the illness feels like, which is a boon to both parents and doctors. However, because the teen years are also noted for emotional swings, hormonal surges, and general insecurities, it is likely that adolescents with ME/CFS will be assigned to therapists. Being sent to a therapist merely reinforces the sense that their suffering is being dismissed as “not real,” and adds the stigma of mental illness to an already unbearable isolation.
Naida Edgar Brotherston, a Canadian social worker who has researched how ME/CFS affects adolescents, compiled a series of in-depth interviews with four young women who contracted ME/CFS in their teens. These touching interviews capture the true impact of what it is like for young people with ME/CFS. It is a horrific experience, filled with endless frustration and hopelessness. One young woman, Val, describes her inability to attend college as “another loss, another grief.” After giving up on school, she says, “I spent several months just at a loss because never before in my life had I nothing to look forward to, nothing to aim for, nothing to go for.”
The alienation that teens with ME/CFS feel is further exacerbated by their awareness of how their illness affects their families. Even the strongest parents cannot help but show their own sorrow and frustration when their children become ill. Young people are well aware of how their parents feel, and of how other siblings are affected, and often blame themselves. Shame vies with anger in these young people, causing frequent outbursts, and profound emotional lability.
The 2006 case definition proposed by Jason et al is meant to apply equally to children and adolescents. However, there are some important differences between the two age groups. Unlike children, in whom symptoms may be noticed only gradually, most teens can pinpoint exactly when they became ill. Typically, teenagers contract ME/CFS after mononucleosis.
Teens, especially girls, also suffer from a higher rate of postural tachycardia syndrome (POTS), a form of orthostatic intolerance, than do adults. Dr. Julian Stewart, professor of pediatrics at the New York Medical College, has observed that the symptoms of patients with chronic POTS are quite similar to those of ME/CFS. The correlation may be as high as 90%.
In 1999 Dr. Stewart tested 26 adolescents with ME/CFS (11-19 years of age) with an upright tilt test to determine blood pressure levels when standing. Out of the 26 ME/CFS patients, 25 experienced severe symptoms including fainting, pooling of blood in the extremities, and rapid heart rate. None of the healthy controls exhibited these symptoms. Given these striking findings, your physician may recommend a tilt table test (HUTT) to confirm orthostatic intolerance, especially if symptoms increase upon standing.
Most doctors adopt a conservative approach when treating adolescents, because their bodies are still developing. For example, drugs such as antidepressants, which are often prescribed for adults, are not recommended for teens. Neither are narcotics for pain, or any of the stronger psychotropic medications.
Many of the nutritional supplements used by adults with ME/CFS can be extremely helpful for this age group, particularly antioxidants. A 2010 study performed in the U.K. by Kennedy et al showed that children (up to 18 years) with ME/CFS showed evidence of oxidative stress. In addition, their plasma levels of vitamin E and vitamin C, two important antioxidants, were significantly reduced.
Treating orthostatic intolerance is recommended. Although not enough research has been done on effective treatments for OI in teens, adequate intake of liquids to maintain blood volume, as well as other management strategies for OI are important.
Adolescence is a time when teens assert their independence. But teens are not in a position to fend for themselves when it comes to dealing with adults in authority: doctors, school officials, counselors, and state bureaucrats. In all of these situations, just as with younger children, the parent must act as an advocate.
Parents should intervene when it becomes clear that the teen is overexerting him or herself. Exercise intolerance is the hallmark symptom of ME/CFS, both for adults and for teens. The “push-crash” pattern commonly seen in adults who do too much on “good” days, and then must spend several days in bed recuperating, is universal among teens. Unlike younger children, who simply lie down when they’ve had enough, adolescents will attempt to keep up.
The following tips will help you develop effective strategies for coping with your teen’s ME/CFS:
- Believe your child. First and foremost, you must believe your child when she says she is ill. ME/CFS is typified by waxing and waning symptoms, a characteristic that is amplified in young people. If your daughter is able to get up and go to school one day, but not the next, she is not faking it. If you discount your child’s symptoms, you will only make them worse. In addition, you will lose your child’s trust. In a teen, this can lead to depression.
- Help your teen maintain social ties. Nothing is more devastating for teens than the loss of friends. You may have to bend a little on family policy, but making friendships a priority (rather than household chores, or even doing homework) is essential for your teen’s well-being.
- Limit physical activity. A 2010 study by Huang et al at the Children’s Memorial Hospital in Chicago found that adolescents with ME/CFS who pushed themselves in an attempt to maintain similar activity levels as their peers paid for it in terms of fatigue severity and an increased need for sleep (particularly during the day). Pushing the envelope will only make the process of recovery longer and harder.
- Be flexible. Some days your son may be able to get up and help around the house, other days he won’t. Don’t saddle your child with a schedule. When he is able to help out, he will.
- Stay calm. It may be difficult, especially during emotional outbursts, to stay calm and collected. But, this is what you must do. Remind yourself that your child is ill. Getting upset or angry yourself will only make matters worse.
- Abandon expectations. Even in normal circumstances, adolescents have a lot to worry about. These are the years in which parents tend to pressure their teens to keep up with homework, get good grades, and fulfill responsibilities for the sake of their future success. However, a sick adolescent has even more anxieties than someone who is well. This is not the time to put pressure on your teen. If your son is falling behind, or if he simply cannot face the challenges of coursework, it can wait. When he is healed, there will be time to pick up where he left off.
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 eye on his or her limits.
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. Remember that, for your child, you are the most important person in the world. Take good care of yourself.
The above is adapted from Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition by Erica Verillo.
Tymes Trust is the longest established national U.K. service for children and young people with ME and their families.
Center for Parent Information and Resources
This site provides information on national disability laws for children, including information on 504 plans, and IEPs. Also includes state resources.
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.
Brotherston, Naida Edgar. Adolescence and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Journeys with the Dragon. Binghamton, New York: Haworth Medical Press, 2001
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.
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