Information for Parents

Parents of children and teenagers with 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.

Believe in your child

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.

Be an advocate

Second, learn to be an advocate for your child. You may need to educate family members and friends about the real physical nature of ME/CFS and its debilitating effects. Talk to your child’s healthcare providers and provide them with information, if they are open to learning more. 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. See below for more information about working with doctors and schools.

Have hope

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.

Take care of you

Fourth, remember to take care of yourself, too. There are online support groups that support parents and caregivers of children with ME/CFS.

Personal stories

“Brian’s Story: A Family Transformed (PDF)” in The CFIDS Chronicle (Moore, 2007).
“Diagnosing ME/CFS in Children: One Parent’s Perspective (PDF)” (Robinson, 2000).
“Janet’s CFIDS Story—A Parent’s Perspective (PDF)” (2013).
“Learning to Live with ME/CFS,” blog by Sue Jackson, patient and parent.
“The Challenges of Parenting a Child with CFIDS (PDF)” (Vanderzalm, 1996).
“Planning Ahead for the Next School Year” (Robinson, 2000).
“Depression and a Success Story ” (Robinson, 2001).

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

Visiting the doctor

It is crucial to find a doctor who understands ME/CFS. Many medical providers are unaware of the illness, or have been exposed to outdated information. If your doctor is open to learning, you can provide them with information: a copy of the 2017 Pediatric Primer (PDF) or just the fact sheet in Appendix C; a copy of a pediatric ME/CFS assessment tool, the DePaul Pediatric Health Questionnaire (PDF); or the CDC page for healthcare professionals.

It is helpful to keep a careful record of your child’s symptoms, such as a daily journal or log. The Pediatric Primer has a functional activity scale and sample activity log (PDF) that might be useful. Symptom tracker apps may be useful to follow daily symptoms and fluctuations. Trackers and wearables such as Curable, Visible, or Symptom Shark, have been reported to be helpful by patients.

School accommodations

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. School personnel may 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).

It may be necessary to adjust your child’s school schedule. They may attend school for only half days, leaving early to rest before doing homework, or arriving late for the second half of the day. The schedule should reflect the needs of your child and their energy capacity. It is advisable to find a supportive physician or provider. Adolescent medicine doctors knowledgeable in navigating fatigue can be helpful.

Requesting a team meeting of your child, their teachers, and you as parents can be beneficial to your child. Including the school nurse can also support your child.

Your doctor can help you interact with your child’s school by writing a letter that describes ME/CFS and suggests school accommodations. Such a letter will be necessary for a Section 504 plan or Individual Education Plan. The Pediatric Primer provides a sample letter (Appendix E) (PDF). A second sample letter (PDF) was developed by Dr. Faith Newton at Delaware State University.

Please see Educational and Disability Rights for more information, and Information for Schools for resources to share with school personnel.

References

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

Resources

“For Those Who Care About Someone with ME/CFS” (PDF) is a two-page fact sheet from the Solve ME/CFS Initiative (2013).
“Information for Friends, Family and Caregivers” (PDF) is a two-page fact sheet from the New Jersey Chronic Fatigue Syndrome Association (Steefel, 2009).
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.
MassME maintains a database of information on providers in Massachusetts, and can help with physician referrals. Please Contact Us. If you would like to recommend a physician or other health care professional, please fill out the online Provider Recommendation Form.

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