Pediatric ME/CFS Treatment

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Last Updated: 24 November 2017 24 November 2017

Treatment approach

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex, multi-symptom illness that currently has no cure, and no FDA approved drug treatments. The main treatment approach is to ameliorate symptoms as much as possible, through Western medicine (e.g., drugs) and/or nontraditional approaches (e.g., diet, supplements, acupuncture). Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer has a discussion of management and treatment approaches based on the limited published literature and on the clinical experience of the co-authors. The Center for Disease Control and Prevention (CDC) has a short summary of management and treatment approaches.

Important points are that medications should be introduced slowly, since many pediatric patients with ME/CFS respond to lower than standard doses, and that patient self-management is very important for quality of life. Good sleep hygiene, learning to pace oneself in order to avoid post-exertional malaise and relapses, and developing coping skills can all be helpful.

The publications in More resources below have additional information about management and treatments.

Medical treatment programs

The Division of Adolescent Medicine at Boston Children’s Hospital has an intake coordinator for complex cases, including ME/CFS. The goal is to provide a more coherent treatment approach for adolescent ME/CFS patients, and to point families to the adolescent medicine doctors who are more knowledgeable about the illness. The phone number for the intake coordinator is 617-355-7178.

Hasbro Children’s Hospital in Providence, RI has an outpatient day program for children with chronic illnesses called the Pediatric Partial Program. The goal is to improve functioning in daily life. The approach includes structured daily activities, individual, group and family counseling, coping strategies, physical therapy, and nutritional counseling. The program treats children and adolescents with a wide variety of chronic illnesses.

More resources

Chronic Fatigue Sydrome/Myalgic Encephalomyelitis:  A Primer for Clinical Practitioners by the International Association for CFS/ME provides extensive information about symptoms, diagnosis and treatment approaches, a pediatric case definition worksheet, a functional capacity scale, and an activity log (Friedberg et al, 2014).

Managing ME/CFS: A guide for young people is a book published in 2015 by Dr. Rosamund Vallings geared for teenagers with the illness, and will also be useful for parents. It gives clear explanations of the illness and summarizes current thinking about treatment approaches. The Kindle edition is available through Amazon or a paper copy can be ordered through Calico Publishing in New Zealand.

Myalgic Encephalomyelitis—Adult & Paediatric:  International Consensus Primer for Medical Practitioners by the ME International Consensus Panel also provides extensive information about symptoms, diagnosis and treatment approaches, and includes diagnostic worksheets (Carruthers et al, 2012).

"What a primary care physician can do for CFS patients," is a 2010 presentation by Dr. James Oleske, a Professor of Pediatrics at the University of Medicine and Dentistry, Newark, New Jersey.

Pediatric ME/CFS Diagnosis

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Last Updated: 27 October 2018 27 October 2018

Read more: Pediatric ME/CFS Diagnosis

Teenage CFIDS - A Personal Story

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Last Updated: 25 January 2016 25 January 2016

by Claire McGrath

My son was 12 and had just come back from Trick-or-Treating with a group of kids. It was Halloween 2004. The night was balmy. He was not his usual chipper self but seemed removed and a bit disappointed.  He said Trick-or-Treating was not the same this year. Was he getting older? Or did the group dynamics take a turn?

Grady went to bed. He slept for 2 weeks straight. He slept 14-16 hrs per day. He woke up each morning to pull himself out of bed, walk to the couch and fall asleep for another 6 hours.

Doctor's visits became a blur. It was a virus they said. It will pass. The third week they sent him for tests. He had blood tests and x-rays. The results were negative and they still said it would pass. They sent him for more tests. His sore throat worsened, his chills became uncontrollable. He had throbbing headaches, barely ate and seemed despondent most of the time. His thirst became uncontrollable. He had been out of school for a month. He quit the middle-school basketball team.

Soon specialist visits were recommended (ENT, immunologists etc.) and the consensus was gastro-esophageal reflux (GERD). Next came the endoscopy confirming the diagnosis. Medications began and we were hopeful for recovery. Nothing improved. Lyme disease, parvovirus, mono? More blood tests.  All negative. Off to Children's Hospital, Boston to have our first discussion about "repeated viral syndrome"...another name for ME/CFS.

The winter ensued, Grady barely attended school. He would attend a few days and relapse for a week or two. The unpredictability of this disease was intolerable. Our family life deteriorated.

It was Mother's Day, 2005. My son Mitchell made his 1^st communion and Grady and I came home from the church, packed the car and left for a 9-hour drive to Lyndonville, N.Y. We had the pleasure of meeting Dr. David Bell, a most compassionate doctor who confirmed the obvious:  Grady had Chronic Fatigue Syndrome. We talked a long time and it was clear that Dr. Bell had devoted most of his life to pediatric ME/CFS patients. It was refreshing to speak to someone who could understand and relate to the symptoms. He understood the psychological aspects of the disease and made suggestions for coping. He was hopeful but realistic and outlined a wealth of information on the research front. Being a scientist myself, it validated the disease for me. Although hating the diagnosis, I found a sense of relief in his diagnosis. It was time to forge ahead and start coping with the illness rather than swimming to survive.

Grady was out 120 days for the 2004-2005 school year. He made it to school only 60 days that year and still graduated to 8^th grade. Working as a scientist during the day, I reserved my evenings for tutoring. I learned American History again and am pretty darn good in 7^th grade algebra.

8 ^th grade was better. I set up a 504 plan immediately at the school. This allowed me the opportunity to secure a school-paid tutor for 5 hrs/week and also the opportunity to educate the teachers, nurse and guidance counselors. I printed out literature and made myself available for questions and concerns. The teachers were very receptive and liaised with Grady's tutor. We coordinated a mid-year plan to drop him to half days that allowed him to complete all his core courses through careful scheduling. By  spring, he was back to full days completing the school year with 34 absences, graduation to high school and  a class trip to Washington D.C. for three nights. It was the highlight of the past two years!

Each school start is difficult and 9^th grade was no exception. We have come to expect a rocky start. Having gotten through the beginning of the year, I can say that November was the worse. The shortened days and lack of sun in the Northeast during the fall season have often been problematic for Grady. Purchasing a SAD (seasonal affective disorder) light has made a world of difference. An exposure of 20 minutes/day has increased his overall energy.

Puberty has been the main obstacle this year. With the ever changing hormones that affect the body, ME/CFS can rage. Over the last three months, he has experienced great benefits from kinesiology. Kinesiology is the holistic study of applying muscle testing diagnostically and therapeutically to different aspects of health care. His health is improving daily and we are hopeful that recovery is on the way.

Teenagers with ME/CFS have a very unique set of coping problems. The lack of socialization due to multiple absences from school plays a huge part in their lives. Imagine how hard it is for a healthy teenager during the middle-high school years and then imagine a teenager with ME/CFS. They feel isolated from their friends and also bombarded with questions. "Where have you been, why are you always sick?" The constant feeling of demoralization becomes all too familiar.

Work your hardest to build a social network for your child. Make your lives accepting to friends and family. Keep your door open and revolving to limit the isolation that can be so enveloping.

Control is another issue we struggle with daily. Due to lack of any control in his life, Grady believes that he can make all decisions pertaining to his life. Arguments persist about sleep-overs, late nights out, etc. Compromise is the key. Teenagers can not judge their illness. They will let their desire to spend time with their friends govern over all else. We can only hope that maturity will change this behavior.

I have learned many things since my visit with Dr. Bell two years ago.

• Make sleep the highest priority.
• Be your child's #1 advocate.  You are all they have!
• Get a therapist for yourself and your child.
• Don't ever question your child's symptoms. Play the rating game and have them rate their discomfort 1-10. This will guide you with both physical and emotional expectations.
• Relapses cause reactive depression not "real " depression.
• Try EVERYTHING—from massage to SAD lamps to vitamin supplements to kinesiology.  Everyone is different and many have found relief in holistic measures.
• Replace activities they can't perform. If your child can't play sports, they can coach. If they can't have a part-time job, give them jobs at home.

Few understand ME/CFS and even fewer have experienced it. Educate the public. Allow them to understand the disease and accommodate the individual.

I tell Grady every day that this experience has made him into a special person. He has learned compassion, empathy and a power within that will fuel his life with success!

Planning Ahead for Next School Year

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Last Updated: 24 November 2017 24 November 2017

By Mary Z. Robinson

The Massachusetts CFIDS/ME & FM Association Winter 2000 UPDATE

As we crawl out from under our warm winter blankets and begin to dream of sunny spring days and flowers promising to bloom, why would we want to devote our energy to next year's school issues? When you may have just managed to get this year going the way you want it to, you may be asking yourself, "Why waste my energy now thinking about what might happen next fall? My child may be much healthier by then and not need any extra accommodations."

Many parents probably feel this way, espe­cially if they have spent this past year striving to get their child the services they need to suc­ceed in school. I admit that I am one of those parents. We have just recently been able to secure for our third grader, a young person with CFIDS (YPWC), services under the educational plan that will best meet her needs now and in the future. It was an uphill struggle to con­vince the school that her academic needs could be better met under an IEP plan than under her 504 plan. (1 will not go into all of the details of these two educational options in this article. But if you have questions on what your child's options are, please refer to the references at the end of this article.

One thing my hus­band and 1 like to do each spring is to look ahead to the coming school year with a best-case/worst-case scenario in mind. This is the time of year when the school personnel are making up class lists and schedules for the coming year. It is far eas­ier to honor a request for a specific teacher or teachers at this time of year, rather than to try to rearrange things in the fall. Let me give you an idea of how we did this when our son was in middle school.

First we looked at all of the subjects that he would be required to take and the possible elec­tives for the coming year. We then looked at the master schedule that the school had planned for the coming year. We felt that the most important classes he would need would be science and math, followed by English and social studies. We then considered his "best" time—for consis­tent attendance—which was after 10 AM. With all this in mind we built the following tentative schedule:

We began with his minimum of one class at school to a maximum full schedule. Because his most important classes (math, science) were scheduled for his optimum time, he was able to get in for at least one of them all year. During his good months he was able to make it from English through social studies. Sometimes 1 would bring him home for lunch, other times he stayed at school.

The second year we did this we were able to arrange a full schedule for him, and he tolerated it for the first 10 weeks before we had to go to a shortened day. This plan of outlining options in the spring, along with teachers who are the most accommodating, really has helped both of our children to be successful. When we first asked to talk to the counselor about this, we explained that we knew all our requests could not be guar­anteed, but we just wanted to have an opportunity to voice our ideas. If the school personnel feel that you have faith in them to do the best that they can for your child, and that you are coming in only to share ideas, they may be more willing to listen and to brainstorm solutions with you.

When you take the time at this point in the year, to start thinking ahead, you can share your ideas with the school about possible scheduling arrange­ments for the fall. Ideally, you can get an accommodation Plan in place and relax a bit in the months to come. (This may help to ease your mind that things are as set as they can be for the next school year, and you can enjoy your summer vacation!) Near the end of the summer we con­tact the school again to let them know how our children are doing, and what to expect from them when the year begins. Sometimes they plan to start out with full days, and other times an amended day is needed right off. This is a good time to share any notes from your child's doctor on any needed accommodations, such as a shortened day, home tutoring, or dealing with physical-education requirements.

I realize that the ideas outlined here may not work for all of you. I would love to hear new ideas and solutions that you have found to be successful. It is our hope to discuss the options surrounding home schooling in a future issue of The Lyndonville News.

For more information on these educational programs and your child's right to a free and appropriate public education, start with the references below.

Book: A Parents Guide to CFIDS: Being an Advocate for Your Child with Chronic Fatigue Syndrome, by Bell, Robinson, Pollard, Robinson, Floyd. Haworth Press, 1999.

The Web:

1. NICHCY—National Information Center for Children and Youth with Disabilities. [NICHYCY, an agency of the Federal Government, was defunded in 2013. Some of its pamphlets can be found at the Center for Parent Information.—Ed.]
2. Higher Education—AAPD Getting There and NCSET Preparing for Postsecondary Education have lists of resources for those with disabilities pursuing postsecondary education.
3. Wrights Law—A great informational website that also publishes a free online newsletter on special-ed laws: www.wrightslaw.com.

Mary Z. Robinson, parent of two YPWCs, works with Dr. David Bell. This article was reprinted by permission of The Lyndonville News, where it first appeared. The newsletter, which was a joint effort of Dr. Bell, Jean Pollard, and Robinson, was written for people with ME/CFS or an interest in ME/CFS.