Study of Support Groups [and online support groups like us???]

Discussion in 'Fibromyalgia Main Forum' started by JLH, Dec 29, 2005.

  1. JLH

    JLH New Member

    Study of Support Groups

    A study published in December’s Journal of Rheumatology has found that support groups are helpful for people with CFIDS. [and I would think fibro, too!!]

    About two-thirds said the top benefits were illness legitimization and finding helpful new information.

    More than a third also said that they gained help finding or dealing with doctors.

    The researchers pointed out, however, that active members reported greater symptom severity and less illness improvement than inactive group members or those who no longer attend meetings.

    Source: as printed on the National Fibromyalgia Association website.

  2. Mikie

    Mikie Moderator

    Has been a God send for me. Every treatment I have done to heal is something I have heard of here.

    I tried a local support group and did not find it helpful. I do not have much patience for people who monopolize meetings complaining on and on and on. I feel sorry for them and can pray for them, but I can't stand to be a captive audience for all their misery. I'm not talking about people with a crisis; I'm talking about people who complain about every little thing and are still angry about being sick. They really need to be in therapy to deal with their anger and outrage. Here, I can choose which posts I want to read.

    I think getting bogged down in too much negativity is not good for healing. I pray for everyone here for help with their illnesses and problems but I just can't deal with reading all the posts.

    Love, Mikie
  3. cerise

    cerise New Member

    I read this study also. My initial experiences with support group meetings(dating back to 1990) I personally found to be depressing and not what I needed at the time.

    It wasn't until I finally got a computer and was able to find this message board that I found "support," ideas and information, basically some direction.

    From this board and one of my posts, came the birth of another online support group of folks from my state (Oregon) and a wonderful lady who put us all in touch with each other. I have made the best of friends whom I have yet to meet but hope to some day. The best thing is that we get it and we understand what we're going through.

    So I'm a firm believer in support groups being an important part of ones "treatment plan."

    I have had this DD 18 plus years and I can tell you for a fact, not much has changed in 18 years, especially when it comes to doctors and CFS/ME. After all these years and no matter where you live, 9 out of 10 doctors are NOT supportive when it comes to CFS.
  4. Lolalee

    Lolalee New Member

    Your post quotes the following:

    "The researchers pointed out, however, that active members reported greater symptom severity and less illness improvement than inactive group members or those who no longer attend meetings."

    Doesn't it make sense that you would no longer attend meetings and/or be inactive if you are feeling better? It seems to me that when our symptoms are severe is when we seek support.

    Am I the only one that sees it that way?

  5. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    sounds like a no brainer to me (and not the fibrofog kind, heh).

  6. cerise

    cerise New Member

    You got it! Too bad the medical professionals don't! Rather stupid remark if you ask me, a no-brainer. Too bad they do this with so many other things that pertain to us.

    Wonder how much money they got paid to come up with those conclusions.

    I have had this DD since 1987 and it seems like the studies continously come up with the same stupid or negative conclusions that ALL require further research (i.e. $$$$).

    If I get one more request for money for research I am going to SCREAM so they can hear me in Canada!

    Meanwhile is anybody doing anything about our quality of life and primary care physicians who know nothing and don't want to believe in this DD? HECK NO!!!

    and that's my rant for today!
  7. jaltair

    jaltair New Member

    Here are two more studies on online support groups:


    Am J Psychiatry 159:2062-2068, December 2002
    © 2002 American Psychiatric Association


    Internet Support Groups for Depression: A 1-Year Prospective Cohort Study

    Thomas K. Houston, M.D., M.P.H., Lisa A. Cooper, M.D., M.P.H., and Daniel E. Ford, M.D., M.P.H.

    OBJECTIVE: This study described the characteristics of users of Internet-based depression support groups and assessed whether use predicts change in depression symptoms and social support. METHOD: Users (N=103) of these groups were recruited into the study cohort and followed prospectively. Demographic characteristics, support group use, depression care, score on the Medical Outcomes Study Social Support Survey, and score on the Center for Epidemiologic Studies Depression Scale (CES-D Scale) were assessed by Internet survey at baseline, 6 months, and 12 months. RESULTS: Users’ demographic characteristics included median age of 40 years, 78.6% women, and 56.3% unmarried. Most (86.4%) were currently depressed (CES-D Scale score >22). Over 50% of participants heavily used the support group (5 or more hours in 2 weeks), and 37.9% preferred online communication to face-to-face counseling. Social support scores were low, compared with those from other studies of primary care patients with depression. The overall follow-up rate was 81.6% at 6 or 12 months. During follow-up, 72.6% of responders still participated in the online group; 81.0% were still receiving face-to-face depression care. Heavy users of the Internet groups were more likely to have resolution of depression (CES-D Scale score 22) during follow-up than less frequent users, after adjustment for age, gender, employment, and baseline CES-D Scale score with logistic regression. Social support scores did not change during follow-up. CONCLUSIONS: Users had high depression severity scores, were socially isolated, and perceived considerable benefit from the group. Internet depression support groups warrant continued research regarding supplementation of face-to-face depression care.


    Internet Communities - Do They Improve Coping With Diabetes?

    John F. Zrebiec, MSW, CDE

    From Harvard Medical School and the Behavioral and Mental Health Unit, Joslin Diabetes Center, Boston, Massachusetts.

    Correspondence to John F. Zrebiec, MSW, CDE, Joslin Diabetes Center, One Joslin Place, Boston, MA 02215 (

    The purpose of this study was to establish and evaluate a Web-based educational and emotional resource for patients with diabetes and their family members. Activity and characteristics of 331 953 user visits were tracked over 74 months, including a survey of user satisfaction. A 2004 survey showed that users were from 37 different countries, with most from the United States (87%) and Canada (4%). The average length of use was 16:44 minutes. Respondents (n = 791) to the satisfaction survey were 71% female, 46% were insulin users, 84% were aged >30 years, 34% had diabetes >10 years, and 39% visited more than 3 times. A total of 74% of all respondents rated participation in the discussion board as having a positive effect on coping with diabetes, and 71% rated participation as helping them to feel more hopeful. A professionally moderated Internet discussion group appears to be a useful strategy for engaging patients with diabetes and increasing perceived ability to cope with diabetes.

  8. victoria

    victoria New Member

    I first found this support group on the web, & this has been one of the most helpful groups overall of those I have found, altho I lurk on a few others that are also quite helpful.

    On a local face-to-face level, tho, I was very reluctant to go to any support group, but finally did... and have found it to be also one of the most positive experiences of my life.

    After reading of others' experiences elsewhere, I feel really blessed to live where I do. Even tho there are some quite severe situations that members are in, they do not whine or monopolize, in fact they are often the most helpful to new members in giving a sympathetic ear...

    While we listen to each others' problems, dilemnas, etc., and most have been suffering with these problems & DDs for a long time, we also find that there is a positivity somehow shared among us in finding the small things of life to enjoy as well...

    While each of us is doing something different than the other, & we do have slightly different symptoms/problems, the dx of CFIDS and/or FM IS the core dx for us all... and hearing about what others are doing and/or hearing what has helped is often quite helpful for others...

    For instance, some have found they had similar heart problems, and some of them are seeing Dr. Cheney or a cardiologist that is interested in his research;

    & my reporting of my son showing so many CFIDS symptoms but getting a dx of Lyme ultimately caused another member to get tested, and she showed positive on the tests as well;

    another is working on getting a doctor to test her since she had had Lyme about 10 years ago, but never felt the same since.

    That article in Psychology Today caused quite a stir - many will use that article as if it were gospel against us, & as if we were making too much of our DDs and making our problem 'learned helplessness' (our fault in other words) rather than a physical condition that we have to learn to work around as much as humanly & individually possible...

    and I would bet a lot of $$ Laura Hillenbrand's comment was taken out of context to make it sound like she agreed with the writers' thoughts!

    And Lolalee hit the nail on the head... as those seemingly few people get better, why WOULD they continue going regularly to a support group anywhere, online or local?

    Just my 2 cents worth, for whatever it's worth...


    [This Message was Edited on 01/12/2006]
  9. JLH

    JLH New Member

    I used to go to a local support group monthly meeting, but it was a 40 minute drive and late in the evening so those who worked could attend. It was OK when I was working because I could stop on my way home, however, once I retired, it has just been too much to get there.

    I enjoyed the sessions and everyone's input. It was nice to get out and talk with everyone who understood each other's problems. Nobody whined and cried around. It was all positive and helpful suggestions.

    I wish I had the strength now to drive that far now to still attend -- I can't see that well driving in the dark now either.

    But .... I think the right group DOES HELP.
  10. blkkat

    blkkat New Member

    i would just like to say this site has saved my life! i have only my husband to talk to and understand what i go through. reg people dont understand we cant just get up go here or there, make plans. then family gets mad cause i cant walk, sit 5 hours to visit, cant sleep, ect. i love talking to all of you ,to me WE are in a way a FAMILY???? anyway thats how i feel. does that sound to weird? HUGS! MONA PS ive learned so much from this site. and i havent been able to find a support group in my area anyway.
  11. sues1

    sues1 New Member

    Was that a support group meeting or a work shop of sorts by someone who had service/therapy/hrbs/meds whatever to sell?
    I was to one of those once.

    I have been to three different support groups in my area. No one handling the meetings was selling anything. Nor did they try and tell us what to do. They were very open and professional. They kept us updated on anything new that they came across and opened up for others to all share the latest they had learned and to also ask questions.

    They do not endorse and Dr./ Med. / treatment. They stayed out of negative things others had to say and would get the meeting back on a productive mode.

    Many support group meetings will allow people to come and speak, rather a pain doctor, chiropracter, etc. But they are not endorsed by the support group.
  12. Mikie

    Mikie Moderator

    Wow! Paris! I was there in 1989 and felt as though I had come home. I spoke "survival" French and it made all the difference. The French were wonderful to Mom and me and I think it's because I made the effort to speak their language. I was in no way fluent, but I managed.

    I never expected to feel as though Paris was "home" for me. It was a really strange feeling.

    I'm glad you enjoy this board. I know that no matter how wonderful a foreign place is, after a while, one can feel a bit homesick and isolated. I hope we bring a bit of "home" to you.

    Love, Mikie