for Chronic Fatigue Syndrome, Fibromyalgia, and Orthostatic Intolerance
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Big Changes at the Pediatric Network

August 2008

Dear Friends,

The Pediatric Network has opened an e-mail group for forum members so we can more easily keep in touch. We are closing our web-based forum and will focus on providing support through the smaller Yahoo e-mail group.

How can you sign up for the e-mail group?

If you’ve previously been involved in the Pediatric Network, please stay in touch by joining our new Yahoo e-mail group! Go to http://health.groups.yahoo.com/group/pediatricnetwork and click on “Join this group.” Or, you may subscribe by sending an e-mail to pediatricnetwork-subscribe@yahoogroups.com.

Using the Yahoo Group website you’ll be able to:

  • Subscribe or unsubscribe to the Yahoo group (including the e-mail list)
  • Change the e-mail address that receives messages
  • Opt to only read messages on the web (not receive e-mails)
  • Share photos, other files, and links with other members
  • Read the e-mail group’s archives

Why have we made this change?

We recognize that closing the web-based forum will be a big change for some members. To put it simply, our lives have changed dramatically in recent years, and we are unable to devote the time needed to maintaining a large website and forum. When Mary and Rebecca founded The Pediatric Network our families were coping with CFS and OI. In the years since then, Mary’s daughter has been diagnosed with late-stage Lyme, additional tick borne infections, and an immune deficiency. She has graduated high school and begins college this fall. Mary’s daily life will change as she supports her in this transition. Rebecca has also been diagnosed with late-stage Lyme, an immune deficiency, and significant neurologic problems, graduated from nursing school, got married, and is expecting a baby. As always, our lives are full of things both wonderful and challenging, and we need to create space for them.

We want to keep in touch with our dear friends in the forum, and to cheer each other on as we explore new things. The best way we see to do this is to use the Yahoo e-mail group to keep each other posted on our lives, ask questions, share resources, and more. We envision reading the Yahoo group more frequently than the forum, because messages will reach members’ in-boxes and be viewed more quickly.

Who is the e-mail group for?

Are you new to the Pediatric Network? At this point the Pediatric Network members are primarily families who have coped with chronic illnesses for a long time. Our focus is no longer on the newly diagnosed, but is more on living the best life possible despite the many ups and downs that come with chronic conditions. We discuss college planning, insurance and SSI, parenting, and coping more often than specific medical questions. Our members’ (or their children’s) diagnoses often started as chronic fatigue syndrome, fibromyalgia, and/or orthostatic intolerance, but in some cases have changed to include tick-borne infections, immune deficiencies, and neurosurgical issues. If your (or your child’s) diagnosis is definitely established as CFS, FM, OI, or chronic Lyme we welcome you to join.

Please sign up!

If you were a member of the forum, we especially encourage you to sign up for the Yahoo Group and to stay in touch. Remember, once you’re subscribed, you can manage your own subscription and can take advantage of other tools on the group’s website: http://health.groups.yahoo.com/group/pediatricnetwork/

We hope to hear from you soon at the Yahoo Group!

Sincerely,
Rebecca and Mary
Co-Founders, The Pediatric Network




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Home E-mail Group Articles Links

The Pediatric Network is run by Mary Robinson and Rebecca Moore Leibowitz. Our focus is limited to our supportive e-mail group. Although we no longer publish a newsletter, an archive of our articles and resources is available online. We encourage you to ask your health care provider about the newest medical information and how it may apply to you.



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.