A Guidebook By and For Young People with CFIDS (YPWCs)

October 18, 2013

Dear Friend,

We have compiled this booklet of advice for you, a young person who has just entered the world of chronic fatigue and immune dysfunction syndrome (CFIDS).

This booklet is written by young people with CFIDS (YPWCs) for young people who have been recently diagnosed with CFIDS. Thinking back to the time when we first became ill, we remember feeling alone and afraid, confused and isolated and like no one understood. It was hard to understand what was happening and why, let alone trying to explain it to others.

Daily life with this disease can be overwhelming and it is especially difficult when you first become ill. Many people feel as though their lives have ended when so many things suddenly change for them. We want to share with you the things that we have learned after living with this illness ourselves. We want to share with you the knowledge that there is a life with CFIDS and that there are things that can make this life easier. We want to offer you a better understanding of what lies ahead and make the road that you find yourself on an easier one to travel.


Chelsea Berns, Jen Day, Lara Hardinge and Vanessa Matthews
The CFIDS Youth Ambassadors

Young Persons with CFIDS Answer Your Questions:

1. What is CFIDS? (the YPWC version)

2. What can I expect the course of this illness to be?

3. Is it normal for symptoms to vary from day to day?

4. Can I tell if I might be starting to relapse?

5. Is it OK for YPWCs to exercise?

6. Is it important to take it easy even on good days? How can I learn to pace myself?

7. Who should I tell about my illness? How do I explain CFIDS to them?

8. What can I say to people who do not understand?

9. How can I keep in touch with the outside world while I am homebound?

10. What activities are fun but don’t take much energy?

11. What are some of my options for getting an education?

12. How can I explain CFIDS to school officials?

13. What should I do about gym class?

14. What are some things I can do to cope with cognitive, memory and concentration problems?

15. What are some things I can do to cope with the times when I am awake and alone at night?

16. Sometimes I feel depressed. Is this normal for YPWCs? What things help overcome this?

17. Sometimes I feel angry. How can I use my anger in a “positive” way?

18. Are there support groups and organizations that can help YPWCs?



What is CFIDS? (the “official” version)Glossary of Terms and Abbreviations

Disclaimer: This document serves as an information clearinghouse for young persons with CFIDS. The ideas expressed by each quoted individual are strictly his/her own. Some of the information contained herein is intended to help YPWCs make informed decisions about their health. However, The Solve ME/CFS Initiative does not dispense medical advice or endorse any specific medical hypothesis or product and assume no responsibility for any treatment or activity undertaken by readers of this document.

Permission is granted to copy this document in its entirety for non-commercial purposes providing the intended meaning is preserved and proper credit is given to The Solve ME/CFS Initiative, Inc.  ©2001, The Solve ME/CFS Initiative, Inc.