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.