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.