Many patients and caregivers do not live close to a myeloma support group. Those who might have a support group conveniently nearby may find that the group meets at a time when they are working, busy with family obligations, or when they are just too tired to get in the car and drive. Others just don't like talking face to face. Whatever the reason, the IMF has, for many years, provided an alternative source of information and support to myeloma patients, caregivers, friends, and family.
The Multiple Myeloma ListServ—affectionately called "The List" by its 1500 members—was founded by Michael Katz, an IMF Director, and June Brazil, a myeloma patient. At a time when the number of in-person myeloma support groups was nowhere near the over 140 groups that exist today, Mike and June sought to link myeloma patients via an e-mail discussion forum.
The List has created a true "cyber family" that includes doctors and lawyers, construction workers and homemakers, teachers and salesmen, retired people, musicians, writers, and others. Members of this diverse group share their experiences, accumulated knowledge, and moral support. They discuss everything from treatments and side effects to family issues and useful tips about dealing with health insurance and improving relationships with healthcare providers. The List has created countless friendships, often between people who have never met.
Recently, List members have even participated in an IMF-led online study that looked at the possible link between bisphosphonate use and a serious condition called osteonecrosis of the jaw. In July 2005, the results of this study were reported in the New England Journal of medicine. The remarkable group thus not only helps each other directly, but has also added to the body of knowledge of an important issue facing many myeloma patients today.
Joining this group couldn't be easier. Here's how:
- Log on to the IMF website at www.myeloma.org
- Click on "Finding Support"
- Click on "Online Group"
This will lead you to a web page where you can sign up to join the list.
List members are welcome to participate in discussions or to simply avail themselves of the information being shared by others. If you are interested in researching a particular topic, a searchable archive is also available, dating back to June of 1998. When posting an inquiry to the List, you will find that the responses you receive are almost always compassionate, knowledgeable, and relevant. The List will probably be the best group you never wanted to join!