Young People's Voice:   Allie's Garden

Allie Hunter was a YPME/C (Young Person with ME/CFIDS) from Australia who died of complications at age 19.  We welcome stories and input from all YPME/Cs and/or their families.


YPWCs, we're searching for you!

The National CFIDS Foundation cares about young(er) people with ME/CFIDS (YPWME/Cs).   We want to do everything we can to help you -- but to do that, we need you to help us.  We need to know who you are, what your needs are, and what you would like to get from Allie's Garden and NCF.  Here's how you can tell us these things:  If you are a PWC in your 20s or younger, please cut and paste this brief survey into email and fill it out and send it to, or print it out, fill it in, and send via "snail mail" to the address below.   It won't take long, there are no trick questions, and you won't be graded, I promise.  Thanks!

YPWC Survey

1. Name:__________________________________________________________
2. Age:________________________ Gender:____________________________
3. How long have you been sick?_______________________________________

4. Describe your activity level (Circle one)                                                                   
Full-time schoolwork      Part-time schoolwork      Homebound     Partly homebound Bedbound

5. What is the biggest problem you have because of being sick? (Circle one)
The symptoms themselves     Loneliness     Dealing with doctors     Problems with school/work       
Trouble with friends     Self-doubt
Other---Please list here_____________________________________________

6. What has helped you the most in dealing with your illness?

7. What would you like to read in Allie's Garden? (Circle all that apply)
Research reports     Experiences of YPWCs      Coping tips      Humor
Advocacy news     Articles by doctors, teachers, etc      

8. Do you have anything else you'd like to add?

Please mail all surveys to Regan Harris, 807 Summer Street, Manchester, MA 01944. Or, e-mail responses to Thanks for your help!!

Parenting a PWME/C -- the good of it?
By Kathleen Gale

    What about this monster with many names, that has invaded our lives?  As we watch it leach the life from our children, it has wrapped its long tentacles into the very fabric of our lives.  It has drained our emotions, sapped our physical strength, broken our finances and stolen our dreams. Is there any good in it?
    I have two sons with chronic fatigue syndrome.  It has turned our lives upside down and inside out.  In the process, I have found some good in it.
    There is nothing like being able to fulfill your understood role as a parent, to force you to take a step back and reevaluate things.  Parents are supposed to love, nurture, teach, provide for, and generally meet every need of their children -- right?  I could do a fair job of it before the monster came into our lives.  Then my Herculean efforts became as nothing.  My striving was ineffective.  At the end of myself, what could I do, but turn to God and His strength, power and wisdom?  -- Not just once, but every time my inadequacy was made evident.  Over and over, I have found my faith being stretched and grown -- as well as that of my family's.  Is that not a good thing?
    Before the monster came, I had priorities in life.  After he came, I was forced to examine my priorities with a fine-toothed comb.  Out of necessity, our lives have become simplified.  We cannot afford the unnecessary things.  Our focus has become much clearer.  My children have earned early in life to sort through their choices, and pick the options with the greatest value.  Is that not a good thing?
    The monster forces my children to stay home much more than "normal" children would.  They don't have a lot of activities, and we even do school at home.  Our family has reaped a level of intimacy that most families will never have.  Is that not a good thing?
    Last week, the monster caused my 10 year-old to cry again, and ask me why God would allow him to be sick.  We spent an hour crying and talking.  I had the time to tell him that it is OK to be angry with God, and that he could tell God that he's mad at him -- and God wouldn't break.  I told him that I was mad at God too.  We talked about trusting--even when we don't understand, and how faith is a gift from God.  After our spiritual wrestling match, the pain was still there, but there was also a joy, and a peace that passes understanding. Is that not a good thing?
    I don't want this monster in my life.  I don't like this monster in my home.  This monster brings evil into my life.  But I have found that God is a God of miracles, and he can even turn evil into good.  Is that not a good thing?

Kathleen is on the board of the Chicago CFS Association.  In addition to her two sons, she has a 19 year-old daughter.

The abstract of Dr. Stewart's article on autonomic nervous system dysfunction has been added to our children's packet.  A SASE will bring it your way with a request if you already have the packet.

History is repeating itself once again.  The British Broadcasting Company in England aired two programs in July about children who were forcibly taken from their homes under a Child Protection Order.  Jill Moss, a tireless child ME advocate in England, is the director of the
Association of Young People with ME (myalgic encephalomyelitis), was happy with the publicity.  Unfortunately, this mirrors a story offered in our materials section, "One Family's Nightmare."  That story, censored by the CFIDS Association, is one of the many reasons that the NCF came in to being.

The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 * (781) 449-3535 Fax (781) 449-8606