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The Pediatric Network News March 2003 The Pediatric Network for Chronic Fatigue Syndrome, Fibromyalgia, and Orthostatic Intolerance Co founders: Rebecca C. Moore and Mary Z. Robinson Table of Contents
The Pediatric Network is a gathering place for all who have an interest in pediatric Chronic Fatigue Syndrome (CFS), fibromyalgia, Orthostatic intolerance, dysautonomia, or similar illnesses. It was founded in the hope that we could pool our resources in one place on the internet, so that people facing one of these pediatric conditions could begin their research at a comprehensive, supportive website. The forum is a community linked to our site where all can come together and talk to others dealing with these illnesses. There is a place for professionals to connect with other professionals, for parents and teachers to get information on academic planning for youth, and for parents and youth to connect with their peers. There is even a section for healthy siblings to share their experiences. In each issue of The Pediatric Network News, we will highlight new research that has been published, conferences and outreach projects you may wish to know about, and tips for using the forum. We will also introduce our moderators and often let them share what exciting things are happening in their forum sections. If you have any suggestions about how to make the News more personal and useful to you, please let us know. We want your experience at the Pediatric Network to be as positive and informative as it can be, and for your time in the forum to be all you needed it to be. Help us out if you have suggestions. Write to us at mary@pediatricnetwork.org. 2. Welcome to Our New Moderators: As the forum has grown quickly this year, so has our team of moderators. We now have 12 moderators: 3 parents, 4 young adults in their 20's, and 5 teenagers. We want to welcome our new crew of youth moderators, who joined us in late February. They are: Andrea, Vikki, Meg, Anna, Lauren, and Jacqueline. We're sure you'll enjoy getting to know them through our live chats, their insightful forum posts, and their biographies, which have been posted on our website. You may have noticed that our home page has been reformatted to make it easier for you to find the medical, educational, parenting, and transition planning articles you need. Please stop by and check out the new layout, site guide, links section, and forum help page. If you have suggestions for improving the website, they are welcome. Send them to webmaster@pediatricnetwork.org. Please help us celebrate the opening of our chat room. We will turn it on at set times, so chats can be hosted by our forum moderators. Attending a chat is a good way to get to know the new moderators and other forum posters. 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. This month's chats are:
5. Meet other forum posters at upcoming events:
Pediatric Generalized Joint Hypermobility With and Without Musculoskeletal Complaints A Localized or Systemic Disorder? Summary: This study of 15 prepubertal children with generalized joint hypermobility and musculoskeletal complaints may be of interest to you, because joint hypermobility is associated with both juvenile fibromyalgia and pediatric chronic fatigue syndrome. Compared to age matched healthy controls, symptomatic children with joint hypermobility had increased laxity of tissues, as evidenced by increased skin extensibility, joint range of motion, and borderline lower diastolic blood pressure. They also had lower quantitative ultrasound measurements in bone (a way of assessing bone mass) and higher degradation products in their urine. 7. Research Studies Recruiting Participants: See the following forum posts:
8. New Opportunities for Youth with Disabilities:
Keeping track of who's who! Sometimes it gets confusing, trying to remember which forum member has what user name, who their parents or kids are, what diagnoses they deal with, etc. When you need a reminder about a person's life or want to contact them personally, please click on their forum user name. The user name is found in their posts, on the left side of the screen. Clicking on the user name will open up a separate window with information about the poster, as long as they have filled out their account preferences and profile. Also, if they have enabled private e-mail features, you may be able to e-mail them directly at their personal address, or may be able to send them a private e-mail through an EzBoard form. All of our forum moderators have contributed to this "online member directory" of sorts by setting their account profile and preferences. Many of our frequent posters have done so as well. Check out examples of member profiles by clicking on our moderators' user names. You can do this, too. It's easy and it will help our forum community become even more familiar and friendly. For instructions about setting up your profile and preferences, see the Tips and Tricks section of our Forum Help page. If you want to learn about someone and they have not completed an online profile, please let them know in an e-mail or post that you hope they'll contribute a profile to the member directory. They may have a question about how to do this, and may be glad to hear from another youth or parent that can help walk them through it. If you have questions about this or other forum topics, see the Forum Help page or e-mail Rebecca at webmaster@pediatricnetwork.org. How to Subscribe to our Newsletter:
How to Unsubscribe:
Confused? Need help? Visit our newsletter subscription page or e-mail webmaster@pediatricnetwork.org. 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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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. | |||||||||||||||||||
