YPWCs Have Much Need for Support

By Rebecca C. Moore

Originally published in Youth Allied By CFIDS, Spring 1997

The CFIDS Association of America's Youth Committee seeks information about the needs of YPWCs and family members and looks for ways the Association) can address them. As part of our outreach work, Linda Reveruzzi and Helen Reynolds, both of whom are parents of YPWCs, conducted a survey of youth/parent support group leaders and contacts. Responses were received from six support group leaders, four individuals who hope to start groups and three individuals who are contacts for YPWCs in need of support.

Linda Reveruzzi, author of the article Starting a Support Group for Young Persons and Parents , compiled the following survey results.

From the survey, the following list of issues and needs are things survey participants would like CYA to provide for YPWCs:

• a list of state CFIDS associations
• suggestions for teens on how to find other teens to start a support group or a friendship network (which would cover a larger area)
• a more in-depth listing of resources geared toward youth for each state
• ideas for social interaction
• information on how to conduct support groups and how to work with YPWCs
• coping ideas for YPWCs - while in school or while homebound
• ways to find healthy parents who can help with support groups
• ideas about where meetings could be held
• ways to locate resources in your state if no list is available
• networking opportunities for young males with CFIDS to talk with other young males
• ideas for educating schools and explaining the effects on YPWCs when they aren't treated with respect and the understanding that they are truly ill
• information about how YPWCs can get the education they deserve. Many times home schooling doesn't work: tutors are not always flexible with their hours; sometimes tutors are inadequate and expect students to teach themselves; many YPWCs have a November-March down-time when most schooling takes place
• a more effective way to communicate with colleges and universities about the needs of college-aged CFIDS patients
• help with determining what will happen to YPWCs after high school? Insurance, jobs, housing, etc.

How has your family or your support organization addressed the issues and needs of youth with CFIDS and their parents? What solutions would you propose? If you have suggestions for these or other issues, please write to us at: CFIDS Support Network, PO Box 220398, Charlotte NC 28222-0398; Fax: 704/365-9755; E-mail: csn@cfids.org.