Pediatric ME/CFS

Pediatric ME/CFS Home Page

What is pediatric ME/CFS?

As in adults, pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex, debilitating, and sometimes disabling illness, which affects multiple systems in the body. Symptoms include profound exhaustion, post-exertional malaise, sleep disorders, neurological symptoms, orthostatic intolerance, and cognitive problems, such as difficulty concentrating or remembering. Pediatric ME/CFS can range in severity from mild (only a small impact on daily activities) to moderate (symptoms become severe with exertion, unable to attend school regularly) to severe (housebound or bed-bound). Symptoms may come and go with time. The prevalence of pediatric ME/CFS in adolescents is estimated to be about 1.8 out of every 1,000 in the US 1. This rate makes pediatric ME/CFS more common than sickle cell anemia, juvenile rheumatoid arthritis, or Down syndrome among children. Please see Pediatric ME/CFS Diagnosis for more information about symptoms and diagnosis.


How is pediatric ME/CFS diagnosed?

Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is diagnosed by exclusion. Because there is no test or biomarker for ME/CFS, the diagnosing physician must rule out other illnesses which may cause symptoms similar to those of ME/CFS. The main difference between the adult and pediatric definitions is that pediatric ME/CFS patients can receive provisional diagnosis after 3 months of ongoing fatigue that results in substantial reduction in activity and is not alleviated by rest, and the concurrent existence of post-exertional malaise, unrefreshing sleep, pain, neurocognitive symptoms, and autonomic, neuroendocrine or immune manifestations. Pediatric ME/CFS Diagnosis has more detailed information, further reading, and checklists.


 What causes pediatric ME/CFS?

Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has no known cause.  It is often triggered by a viral illness, resulting in the sudden onset of symptoms, although roughly 25% 1 of pediatric cases develop slowly over time.


What about school?

A primary concern for children and adolescents with ME/CFS is how to continue their education. Many patients are too sick to attend school regularly, or at all.  Some school personnel have trouble understanding that ME/CFS is a real, physical illness, especially if doctors are slow to arrive at a diagnosis. However, public schools are legally required to make accommodations so that children with physical impairments, including ME/CFS, can get a free and appropriate public education (FAPE). Please see Educational Rights for information about working with schools, and Information for Schools for information to share with school personnel.


More Resources

The Center for Disease Control and Prevention (CDC) website has summaries and fact sheets about pediatric ME/CFS.  Information was updated in July 2017.

Practical Guidance on Diagnosing and Managing ME/CFS presented at the Massachusetts Academy of Family Physicians Annual Meeting, March 24, 2018, by Alan Gurwitt, MD and Leah Williams, PhD.


References

1. Jordan KM et al, “Prevalence of Pediatric Chronic Fatigue Syndrome in a Community-Based Sample,” J Chronic Fatigue Syndrome 13, no. 2-3 (2006): 75-78.

Educational Rights

Federal laws

Having a chronic, debilitating illness like Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) can severely impact a young person’s ability to attend school. Your child’s right to a free and appropriate public education (FAPE) is protected by two laws, Section 504 of the Federal Rehabilitation Act of 1973, and the Individuals with Disabilities Act (IDEA, 2004).

The first is a broad civil rights law that protects the rights of individuals with handicaps to participate in programs and activities that receive funding from the US Department of Education. ME/CFS is a physical impairment under Section 504 and schools must provide accommodations so that your child has access to an education. Typical accommodations include reduced schedules, waiver of attendance policies, waiver of PE requirements, extra time for exams and projects, access to tutors or online classes, and access to a place to rest at school as needed. Section 504 requires a written Plan which should be developed jointly by the school and the parents. It is helpful to have a doctor write a letter giving the diagnosis, describing the symptoms and defining the accommodations needed.

IDEA also requires a free and appropriate public education for children with disabilities and may apply when ME/CFS causes learning difficulties, as opposed to difficulty with physically attending school. Children with ME/CFS fall in the category of “other health impaired.”

Eligibility under IDEA is determined by an evaluation which tests academic and cognitive performance. The evaluation may include a psychological assessment. Be wary if the school seems intent on proving that your child is not really sick, but suffering from a psychological problem.

Parents have the right to an independent evaluation if they disagree with the school’s conclusions.

IDEA requires the development of an Individual Education Plan (IEP) that outlines special education services for the child. The IEP may also include the accommodations listed above for a 504 Plan. A doctor’s letter is very helpful with the IEP process, especially if it describes the specific services needed.


Home and hospital services

If your child is too sick to attend school for more than 14 school days (not necessarily consecutive), they are eligible for Educational Services in the Home or Hospital. This usually includes tutoring in the home or hospital so that your child can keep up with their classes. These services are accessed by having your child’s medical provider fill out a form (28R/3) and submit it to the school principal or to the office of special education. Please see the Massachusetts Department of Elementary and Secondary Education website for more details.


Online education in MA

Online classes are an option if physically attending school is too difficult. There are two virtual public schools (K-12) in Massachusetts that are tuition free for state residents. The TEC Connections Academy Commonwealth Virtual School (TECCA) is an independent virtual school that uses the Connections Academy online educational software. 

The Massachusetts Virtual Academy (MAVA) is run by the Greenfield, MA school district and uses the K12 online educational software. 

The Massachusetts Department of Elementary and Secondary Education website has a Frequently Asked Questions page for virtual schools.

Some school districts offer online classes at the high school level as an alternative to the traditional school program. Attending a private online school is also a possibility. These have tuition and materials costs and the student is considered to be homeschooled by their local school district.


 

 

More resources

Example of 504 Plan Accommodations” is a list of some possibilities from the Massachusetts CFIDS/ME & FM Association (2012).

IDEA vs 504” fact sheet from the New Jersey Chronic Fatigue Syndrome Association provides a table comparing the two laws (2010).

Presentation to the Chronic Fatigue Syndrome Advisory Committee” has a summary of laws, suggestions for accommodations, and a sample letter from a doctor to a school (Comerford, 2008).

Sample letter from doctor to school is from Appendix E of the Pediatric Primer (Rowe et al., 2017).

Sample letter from doctor to school developed by Dr. Faith Newton, Delware State University (2017).

School Accommodations for Kids with CFS and Related Illnesses,” blog by Sue Jackson (2012).

Example School Accommodations for Kids with CFS,” blog by Sue Jackson (2012).

 

Information for Schools

For teachers

A chronic, debilitating illness like Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) can severely impact a student’s school experience and ability to participate. It is important not to mistake symptoms of the illness for laziness or avoidance of social interaction. Students with ME/CFS want to attend school and want to continue their education. Teachers can help by understanding the illness and supporting the student with accommodations like extra time on exams and assignments, or combining in-classroom instruction with home-based tutoring. One key is to work as a team with school administrators and parents to develop an approach that works for the individual student. School Fact Sheet for Parents, Educators, and School Nurses (Newton, 2017) describes the disease and the educational implications, while School Fact Sheet: Classroom Strategies (Newton, 2017) describes accommodations and teaching strategies. More information can be found in the resources below.

ME/CFS in Children: Fact Sheet for Education Professionals (CDC, 2017).

ME/CFS Fact Sheet for Schools, Appendix D in the Pediatric Primer (Rowe et al, 2017).

Letter to educators & agencies regarding younger people with ME/CFS, pages 27 to 28 of Myalgic Encephalomyelitis—Adult & Paediatric: International Consensus Primer for Medical Practitioners (Carruthers et al, 2012).

Recognizing and assisting students with CFS,New Jersey Education Association (NJEA) Review (Friedman and Underhill, 2007).

"Teach-Me: A Sourcebook for Teachers of Young People with ME/CFS or FM 2nd ed.," is an online booklet for educators. (Carruthers and Bell, 2005, reprinted 2012).

Note: CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome) is an older name for ME/CFS.


For school  nurses

School nurses can help students with ME/CFS by believing students when they need assistance and by providing a quiet place to rest during the day. They can also help by keeping track of medications and side effects, and by keeping track of day-to-day variations in condition and functioning. Please see the documents below for more information.

Evaluating ME/CFS:  A Checklist for School Nurses” (Bell, 2009).

Key Aspects of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in Children and Adolescents” is a presentation for school nurses by Dr. Alan Gurwitt at the Northeastern University School Health Institute, August 2012 (Gurwitt, 2012).

Information for Parents

Tips for parents

Parents of children and teenagers with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) face many challenges. It can be scary to have a sick child and have no idea of what is wrong. It can be frustrating to deal with medical practitioners or school officials who are dismissive or do not know much about ME/CFS. It can be painful to watch your child struggle with physical symptoms and the emotional consequences. Here are some suggestions that may help.

First, believe in your child. Listen to your child and accept what they say about how they feel and what they are able to do. Acknowledging and validating their illness will help to relieve stress both for your child and your family. Encourage your child to do what they can and accept that ME/CFS imposes severe limitations.

Second, learn to be an advocate for your child. Learn as much as you can about ME/CFS and how it affects your child’s life. Speak with teachers and school staff, such as administrators, school nurses, and counselors, about your child’s medical situation and work with them to develop an educational plan. Please see Educational Rights for more information about working with schools. Talk to your child’s healthcare providers and provide them with information, if they are open to learning more. Please see Finding a Doctor in Pediatric ME/CFS Diagnosis for clinical guides and fact sheets. You may also need to educate family members and friends about the real physical nature of ME/CFS and its debilitating effects.

Third, have hope. The prognosis is better for children and adolescents than for adults. There is no guarantee for any one individual, but in a five year follow-up study in Australia, 60% of patients considered themselves well 1, and in a thirteen year follow-up study in the US, 37% of patients considered themselves resolved and another 43% considered themselves well, but not completely resolved 2.   Recent attention by federal agencies, such as NIH and CDC, will hopefully lead to more research funding and a concerted effort to find effective treatments and maybe a cure.

Fourth, remember to take care of yourself, too.


Personal stories

Brian’s Story:  A Family Transformed” in The CFIDS Chronicle (Moore, 2007).

Diagnosing ME/CFS in Children:  One Parent’s Perspective” (Robinson, 2000).

Janet’s CFIDS Story—A Parent’s Perspective” (2013).

Learning to Live with ME/CFS,” blog by Sue Jackson, patient and parent.

Teenage CFIDS—A Personal Story” (McGrath, 2007).

The Challenges of Parenting a Child with CFIDS” (Vanderzalm, 1996).

Note: CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome) is an older name for ME/CFS.


 

More resources

For Those Who Care About Someone with ME/CFS” is a two page fact sheet from the Solve ME/CFS Initiative (2013).

Information for Friends, Family and Caregivers” is a two page fact sheet from the New Jersey Chronic Fatigue Syndrome Association (Steefel, 2009).

"Planning Ahead for the Next School Year" contains tips from a parent and gives resources for those looking ahead to postsecondary education.

Social Beings” is an article from The CFIDS Chronicle with tips for parents to help their children maintain social connections (Robinson, 2006).

Taking the Caregiver into Account” is an article from The CFIDS Chronicle urging caregivers to take care of themselves, too (Layzell, 2008).

The Youth Page at the Solve ME/CFS Initiative website has several useful articles, including “Tips for Parents” and “Improving Communication with Your Healthcare Provider.”

Note: CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome) is an older name for ME/CFS.


References

1. Rowe KS,Five-Year Follow-Up of Young People with Chronic Fatigue Syndrome Following the Double Blind Randomised Controlled Intravenous Gammaglobulin,” Journal of Chronic Fatigue Syndrome 5, no. 3-4 (1999): 97-107.

2. Bell DS, et al, “Thirteen year follow-up of children and adolescents with chronic fatigue syndrome,” Pediatrics 107, no. 5 (2001): 994-998.

Information for Teenagers

Information for teenagers

Some advice for teenagers from a teenager with ME/CFS (A. W., 2015):

  • Learn to pace yourself. Try to listen to your body and figure out if there are indications when you do too much and are going to have a relapse. It is very easy to overdo when you feel better.
  • Don’t hate yourself if you miss a day of school. Physically getting to school and sitting in a classroom is exhausting when you have ME/CFS. Attending school every day may not be the highest priority.
  • People can be jerks about this illness, but that is just because they don’t understand. Don’t take it personally.

 

More resources

Managing ME/CFS: A guide for young people (2015) by Dr. Rosamund Vallings is 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.

A Kid’s Guide to Surviving and Succeeding in School with CFS & FMS,” from the Organization for Fatigue & Fibromyalgia Education & Research (now the Bateman Horne Center) (2010).

Children Explain What It’s Like to Live with CFIDS” in The CFIDS Chronicle (Lynn Vanderzalm, 1996), published by the CFIDS Association of America (now the Solve ME/CFS Initiative).

Improving Communication Between Doctors and Youth with ME/CFS,” (Sharon Walk, Solve ME/CFS Initiative, 2013).

Note: CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome) is an older name for ME/CFS.