- Last Updated: 24 November 2017 24 November 2017
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 Many medical providers are unaware of the illness, or have been exposed to outdated information (e.g., ME/CFS is a psychological problem). If your doctor is open to learning, you can provide them with a copy of the recently published Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer and/or the IOM Report Guide for Clinicians. If you want something shorter, you can use the fact sheet in the Pediatric Primer (Appendix C) and/or the Center for Disease Control and Prevention (CDC) two page fact sheet for healthcare professionals.
It is helpful to keep a careful record of your child’s symptoms, such as a daily journal or log. The Chronic Fatigue Syndrome Myalgic Encephalomyelitis: A Primer for Clinical Practitioners has a functional activity scale and sample activity log that might be useful. You can also download a copy of a pediatric ME/CFS assessment tool, the DePaul Pediatric Health Questionnaire, for your doctor.
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 (see Educational Rights). The Pediatric Primer provides a sample letter (Appendix E) . A second sample letter was developed by Dr. Faith Newton at Delaware State University.
The Massachusetts CFIDS/ME & FM Association maintains a database of information on providers in Massachusetts, and can help with physician referrals. Please Contact Us online or call the Information Line. 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.