support groups

Discussion in 'Fibromyalgia Main Forum' started by allhart, Oct 22, 2002.

  1. allhart

    allhart New Member

    dose anyone know where to find support groups the ones listed on this site are not active and none in the phone book dont have the 17.oo to pay the fm network any suggustion?
  2. allhart

    allhart New Member

    dose anyone know where to find support groups the ones listed on this site are not active and none in the phone book dont have the 17.oo to pay the fm network any suggustion?
  3. Fairyeyes

    Fairyeyes New Member

    Here in Albuquerque, the land of manana(why do something today, when it can be put off till tomorrow-grrrr), there is only one group, and it is specifically for people doing gui treatments. But I found them thru the hospital my doc is affliated with.
  4. motg

    motg New Member

    In the classafied adds of my local paper they have some listed for MI.
  5. allhart

    allhart New Member

  6. blast

    blast New Member

    Usually doctors that work with arthritic pts. know of some support groups, if there are any, in your area.(Rheume's)
    I know I have had a really hard time finding one in my area.
    So, Barb, where are you at in MI? I am here too, Ann Arbor to be exact. Where are the support groups located in your area?
  7. polliwog

    polliwog New Member

    Hi there,
    I saw in the Alb. Journal in an insert that one of the hospitals there sponsors a support group once a month. Is that the one you attend? I think it might have been at Anna Kaseman or someplace. Are you having success with the guifensin? I tried it for a while and got discouraged on it --- never sure if it helped at all. I later thought I read an article refuting its use for this disease?

    Queston: What do you do at meetings, and how could I start one in my area? I have limited energy and of course so does everyone else with this, but I do know several other women in my community that suffer from this. I wouldn't mind being a moderator or mentor for such a program, but I don't have any guidelines and would hate for it to turn into just a gripe session with no positive results. I tried meeting with several of the women a couple of times, and I finally got so frustrated and confused----every one of them had different treatments and things that they were trying, and I just didn't know what to believe. Don't misunderstand me, I welcomed their support, but I didn't feel that for myself some of the things they were trying had any merit. I would feel more comfortable using guidlines of some kind for the group. Is there any suggestions for these groups? My own feeling is that it should be a quiet supportative atsmophere, with mutual interest, but no pressure to try the latest fad in the neighborhood. One of them was on mega vitamins, one was on the chi machine, and I just felt a pressure to try these things, even though I doubted their effectivness. Thanks Poliwog
  8. amymb74

    amymb74 New Member

    keeps a current list of support groups - I think you can get in contact w/them thru their website - they mailed me a list.Here is there info. on support groups & the adress to send for a list...Hope this helps......AMY

    Support Groups
    CFIDS is foremost a physical disease. However, living with CFIDS requires adapting to an entirely new way of life. People with CFIDS often feel alone with their disease and with the everyday struggles this illness brings to their lives and the lives of family members and friends. Support groups ease the transition for the newly diagnosed patient and provide essential emotional support in the ongoing struggle with the disease. Knowing that others share this journey offers comfort and reassurance.

    The major objective of a CFIDS support group is to provide a warm and caring environment where CFIDS patients can share their experiences, methods of coping and insights into living with a chronic illness. Sometimes the best words a CFIDS patient can hear is "I know how you feel" or "I understand" from someone who really does. Most CFIDS patients would agree that the greatest benefits a CFIDS support group offers are confirmation and validation of the illness and the assurance that they are not alone. Additionally, a support group can give members a greater sense of self-esteem and empowerment as they learn to cope and adapt to life with a chronic illness.

    The CFIDS Association of America maintains state-by-state listings of CFIDS support groups and contacts. For a list of support groups in your area, e-mail your name and mailing address to or mail your request to The CFIDS Association of America, Attn: Support Group Info, PO Box 220398, Charlotte NC 28222-0398.

    For additional information, please visit the following areas on the Association's Web site:

    Start a CFIDS Support Group in your area
    Join the CFIDS Support Network! This support group member-organization helps leaders run more effective support groups. Membership benefits include quarterly updates on CFIDS research, education, and public policy activities, free support group leader conference calls and a 50% discount on educational materials distributed by the Association.
    Review suggested support group activities and projects that best serve your members.
    Learn how your support group can become involved in the Association's efforts to educate the general public, healthcare professionals, and policy makers about CFIDS.
    Read about coping strategies of CFIDS patients and their family members. Additional coping articles can be found by visiting our Chronicle index.
    Explaining an Invisible Illness.
    Fatigue 101.
    One to One. This regular Chronicle feature allows patients to share strategies, and helpful thoughts about life with CFIDS
    Living within my envelope: A how-to story.
    Read real life profiles of CFIDS patients. [This Message was Edited on 10/23/2002]