The Pediatric Network News

April 2003

The Pediatric Network for Chronic Fatigue Syndrome, Fibromyalgia, and Orthostatic Intolerance

Co-founders: Rebecca C. Moore and Mary Z. Robinson

Table of Contents

1. Your Quotes Needed for New Brochure
   
2. Help is Available: Increase Awareness
   
3. New Resources on the Website
   
4. New Pediatric Research
   
5. April Live Chat Schedule
   
6. You Can Donate Online
   
7. Introducing Our Store
   
8. Hot Topics in the Forum
   

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1. Your Quotes Needed for New Brochure:

We are creating a brochure and web page that tell what it is like for young people to have these illnesses, and for their parents and siblings, too.

Will you share quotes with us that we can use in the brochure? We want to tell in your voices what it is like for a young person and their family to live with chronic illness. 

Here are some questions you could give brief responses to. You can write about one of them, all of them, or none of them--whatever interests you! We aren't asking for essays, just for brief quotes that we can use in a brochure and web page.

• Are you a young person with one of these conditions, a parent, or a healthy sibling?
  
  
• Can we use your first name in the brochure?
  
  
• If you are a young person, how old are you now?
  How old were you when you got sick?
  
  
• What do CFS symptoms feel like?
  
  
• What do FM symptoms feel like?
  
  
• What do NMH or POTS symptoms feel like?
  
  
• How do your symptoms affect you when you want to go to school or be with friends?
  
  
• How do you feel about visits to the doctor?
  
  
• What do you want your doctors to know?
  
  
• What has a doctor or teacher done that made a difference in your life?
  
  
• What do you want your family members to know?
  
  
• What do you want your friends to know? How can they help you and your family?
  
  
• What is the hardest thing?
  
  
• What makes you happy?
  

Please pick a question or two and share your thoughts. You can post them in the forum thread where we're working on the brochure, or may e-mail them to Mary and Rebecca.

2. Help is Available: Increase Awareness

We have a brand-new website section devoted to ways that you can help others understand and learn about these pediatric conditions. You will find resources to share and ideas brainstormed by other parents and youth at www.pediatricnetwork.org/advocacy/awareness.htm.

A new Pediatric Network Brochure is also available for your Awareness efforts.

Awareness projects are highlighted at this time of year because May 12 is International CFS/ME/FM Awareness Day, a time when volunteers take steps to tell others about these conditions.

3. New Resources on the Website:

• New Parent's Page!
  
  
• Shanon's Tips for Parents
  
  
• Independence and Young Adulthood website section with expanded resources on Internships and Careers and Medicaid and Insurance.
  
  
• Bookstore
  
  
• Visual Dysfunction and Learning
  
  
• New Page Offering Free Materials from the Pediatric Network
  
  
• Newly revised Awareness Projects Page
  
  

4. New Pediatric Research:

• Contrasting neurovascular findings in chronic orthostatic intolerance and neurocardiogenic syncope. Clin Sci (Lond). 2003 Apr;104(4):329-40.
  
  
• Psychiatric adjustment in chronic fatigue syndrome of childhood and in juvenile idiopathic arthritis. Psychol Med. 2003 Feb;33(2):289-97.
  
  
• Clinical assessment, management and outcomes of a group of adolescents presenting with complex medico-psychosocial conditions. Ann Acad Med Singapore. 2003 Jan;32(1):51-7.
  
  
• Comparative Study of Anxiety, Depression, Somatization, Functional Disability, and Illness Attribution in Adolescents With Chronic Fatigue or Migraine. Pediatrics 2003;111 376-381
  
  

5. April Live Chat Schedule:

You will see a link to our chat room at the top of the Forum Home Page beginning at least half an hour before a scheduled chat.

• Monday, April 14: Parents' Chat
  9:00 PM Eastern Time (01:00 GMT/UTC)
  
  
• Thursday, April 17: Youth Chat
  3:30 PM Eastern Time (noon Pacific; 19:30 GMT)
  
  

6. You Can Donate Online:

Our new Donations Page explains how you can contribute to The Pediatric Network by PayPal or Check. We appreciate your contributions to our efforts. We're in this together!

7. Introducing Our Store:

One way that you and your friends can support The Pediatric Network is to begin all of your Amazon.com purchases at our website. If you follow a link from the Pediatric Network to Amazon.com and make a purchase within the hour, a percentage of the sales cost will be given to The Pediatric Network and will help support our work. A greater percentage of the sales cost is given to us if you purchase books directly through links provided in our online store.

When you purchase books through our store, the sale and shipping are completed by Amazon.com. Our role is to recommend books and other Amazon.com products that we think you would like. We've selected hundreds of books appropriate as resources on medical, educational, and coping issues, plus have highlighted a number of gifts that would be appreciated by chronically ill youth or their caregivers.

Please let your family and friends know that they can help The Pediatric Network by following our links to Amazon.com whenever they plan to make purchases. Thank you for your support!

8. Hot Topics in the Forum:

• We want to hear from YOU for our brochure
  
• April Fools Day Jokes About Brainfog
  
• More Questions on OI
  
• Trying to find a specialist in Ohio
  
• No diagnosis yet
  
• Headaches
  
• Diagnosing POTS
  
• Proamatine (midodrine) for Orthostatic Intolerance
  
• Visit to a specialist in Germany
  

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Visit or Contact Us:

You can learn more about The Pediatric Network for Chronic Fatigue Syndrome, Fibromyalgia, and Orthostatic Intolerance by visiting our home page at www.pediatricnetwork.org. You can contact the Pediatric Network co-founders, Mary Robinson and Rebecca Moore, by e-mail at mary@pediatricnetwork.org and rebecca@pediatricnetwork.org.

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The Pediatric Network website and forum are run by Mary Robinson and Rebecca Moore. When you follow links on our site to Amazon.com and make purchases, a portion of the sales cost supports our work. Visit our store for shopping suggestions:  gifts for kids or parents, tools for adapting activities, medical and special education books, coping strategies, and more.

Disclaimer: The views in this website and forum are the feelings and opinions of the individual authors and do not necessarily reflect all of the current theories that are being explored and published. Ask your doctor or other health care provider about all medical information that you consider applying to your situation, including the information you read in our website and forum. We take no responsibility for the decisions you or your family members make about medical care. It is up to you to verify that the information you read is correct and applies to your unique situation.