EMS Discussion & Information Yahoo! Group

Yahoo! Groups: EMSDiscussionInformation

This group was created on July 10, 2003, to replace the EosinophiliaMyalgiaInformation group. I lost access to that group as moderator when I created a new password and encountered problems with typing it in. Yahoo told me for days and days that I was not typing the right password, and I could not retrieve the password due to the fact that when I joined Yahoo years ago, I did not keep answers to some of the information they ask. So I decided to create a new group, make it more user-friendly - that is, not only I can post archived info on EMS, but members can comment and ask questions, also, about the information posted or about EMS. If you belong to the old group - to which I cannot get access - I hope you will join this new group. NO NEW POSTS will be sent out to the old EMSINFO group, since I was the only person who could do that. At the new site, you can always elect to receive a digest or read mail at the web site in order to cut down on emails in your box. Note: The new group I have founded is not connected with the national non-profit EMS support group.

The National Eosinophilia-Myalgia Syndrome Network, Inc.

NEMSN

NEMSN is the only national non-profit organization dedicated to helping persons who have EMS, their families, and others interested in the disease. You may visit the site to learn more about what the group has to offer its members - such as the newsletter, a list of compassionate physicians, and BB. I do not endorse their Web site and vice versa; however, if you have EMS, you may want to take a look at the organization's offerings.

National Organization for Rare Disorders, Inc.

NORD

NORD Networking Program for rare diseases: NORD maintains a confidential patient Networking Program for exchange of information and support among people with the same rare disorder/disease, such as EMS. Participation requires a signature of either the patient, the patient's parent if the patient is a minor, or an immediate family member. There is a form to be filled out, and the cost to join NORD is $30 a year which gives a person full membership privileges. According to the EMS article I ordered from NORD, at present 11 persons or families are members of the EMS Networking Program. For further information on NORD and their work, please visit the Web site or call 203-744-0100 (Danbury, Connecticut). Program not endorsed by me.

My Personal EMS/FM/CFS List

This list is for those with EMS who have also been diagnosed with Fibromyalgia and/or Chronic Fatigue Syndrome. Since these conditions overlap frequently, and because many with EMS have been diagnosed with FM and/or CFS secondary to EMS, I established this personal list for people interested in receiving information on these disorders. I usually send out information several times a month except during summer and holidays. Write to me at faith_rumph@yahoo.com to get on this list. I will personally respond with more info. NOTE: Some of you reading this may already be on the list receiving info from my AOL address. If so, there is no need for you to write to me again. You will continue to receive information. As with the personal EMS list, privacy is protected when sending out e-mail information. I do that by sending mail using blind carbon copies for members.