A message to the moderators...

Discussion in 'Fibromyalgia Main Forum' started by Melanie_Ann, Jan 4, 2003.

  1. Melanie_Ann

    Melanie_Ann New Member

    This is going to sound a little strange but here goes. Please don’t take it as gung hoe. I’ve been thinking about it a lot for the last few months.

    I live in a suburb about 40 minutes from Philadelphia, PA. I've been doing as much research as I can since I was diagnosed earlier last year (I now know that this illness has been some sort of process which has been occuring since early childhood).

    How does one go about starting a support group? The closest support group to me is in Chatham, NJ, which is about 2 hours drive. Given my limited abilities, and since I'm blind as a bat driving at night, that doesn't work.

    It may take me 3 hours to type one page of text, nevertheless, I still get it done. I most likely won’t remember what I just read and I may need to read the same paragraph 5 or 6 times, but eventually it sinks in <almost> Regardless of these facts which have persisted my entire life, I did manage to sustain gainful employment up until the end of last year. I would like to KEEP the brain synapses, neurons or whatever they
    call them (lol) firing. <My mother died in the end stages of Alzheimer’s at age 78.>

    Typing is a real problem for me because I have stabbing pain in my hands, along with severe paranthesias (sp?) I'm going to get my husband to set something up with voice recognition. I used it a year ago on my PC and I liked it. Now it's become a necessity. With a notebook in bed and the voice recognition, I should be able to do something.

    I mean where do you start? You would create a charitable organization at the state level? My sister once set up a sole proprietorship so I am familiar with that process.

    Where do they have these meetings? Hospitals?

    Most importantly, the need is to find people in this area who would be interesting and physically able to attend. I think it's soooo important to talk to other people who have walked in your shoes.

    Say, I got my genius husband to create a web page, and then we made up printed informational material and began mailing to various healthcare professionals. Yes I know the issue is money. I've been thinking about that. It’s just that I have 40 years of bizarre medical events in my life. I’m hoping that if I was to share them it might help someone else.

    You know, since being a little kid, I've always had trouble verbalizing what I wanted to say. It's all in the head, but I have trouble getting it out, especially in speech. Not to brag, but I did test potential genius in high school. Yes I know, I'm 40 now and minus quite a few brain cells I can imagine. But I still can do pretty good on paper.

    Does this sound very far fetched? I mean there is close to NO public awareness. Especially in Central-Southern New Jersey. THEY NEVER EVEN HEARD IT!

    How can we get closer to finding answers unless people are educated? Obviously they are not teaching them in medical school about CFIDS and FM.

    Any thoughts, comments, criticisms, anything at all, please feel free to email me.

    Oh oh, are we aloud to post an email addy?

  2. klutzo

    klutzo New Member

    I am not a Moderator, but I ran an FMS support group for ten years, and a call-in line for 4 yrs. after that, so I have some ideas....
    If you want sponsorship, contact your local branch of the Arthritis Foundation, ask to talk to the Program Director, and see if they are helpful....some are, and some are not. Youcan also try local hospitals, esp. rehab facilities. Or, if you prefer being independent, just call your local library and ask them if they allow their meeting rooms to be used by not-for-profit organizations. Almost all of them do and usually for free. If not, you can try the meeting rooms in local franchise restaurants. They usually have one, and you can point out that they will get free publicity for their good works when your ad appears in the paper. Next, call the paper and they will usually give free ads to worthy, non-profit causes. In big areas like mine, they even have a special monthly section that lists all the non-profit meetings by category. Local weeklies might be good to try also, and you can print flyers to hand out or ask folks to tape up in store windows as well, if you have the energy. Tell your doctors and give them a flyer with all the info to show to other patients. You might also ask a good FMS doc you have to be a speaker. Those who are not research oriented, or good at speaking often have speakers at almost every meeting, and this does assure a larger turn-out, because most patients still belive, erroneosuly IMO, that docs know more than they do about FMS. Before your first meeting, decide what your strengths are as a leader and make them work for you. I decided to ask the library I used for a blackboard in the mtng. room, since I do tons of research and liked to do a little presentation on something or other to start off each meeting. Some leaders, who are not teaching oriented prefer to have new folks stand up and tell their stories to get the meeting going, or they hand out copies of a research article to discuss. But, you could also just wait to see who shows up, and ask them what they want to get out of a support group and go from there.....that's what I would do if I had it to do over again. If they are like most FMSers, there will be no shortage of ideas. Ask for people's help right away, so they feel a part of the group. Use your helpers to set up a phone tree to remind people about future meetings, so you don't have to do it all. There is a TON of info on the Internet about setting up support groups, so I urge you to do a search. Lastly, and very important, IMO, if you do not have any background in abnormal psychology, you will need to locate some material on how to deal with different personality types in a group setting, otherwise the one or two sickos who always show up will steamroll right over you and ruin your group. IMO, this is even more important now than when I was leading a group....with all the info on FMS available on the Internet, less normal FMSers will feel the need of a live, in person group, and you will undoubtedly end up with some folks who are seriously emotionally ill and have no other support system. If you can't find this info on the Web, any library should have books on group dynamics, and I know some branches of the Arthritis Foundation have handouts on this very subject, because I got one from them, and even though I do have the psych background, it really helped to refresh my memory. My fingers are getting tired, but I hope I've given you some ideas to run with.
    Good luck and may God Bless you for doing this work. You will get great satisfaction and a feeling of purpose out of this, and may find, like I did, that you get even more out of it than you put into it!
    [This Message was Edited on 01/04/2003]
    [This Message was Edited on 01/04/2003]
  3. Melanie_Ann

    Melanie_Ann New Member

    What a wealth of information. I am overwhelmed :)

  4. klutzo

    klutzo New Member

    I thought of something more! When I started, it made sense to go with Arthritis Foiundation sponsorship, because FMS was widley regarded as bunk (this was 1989) and the Arth. Found. gave us credibility. If we wanted to attract a speaker, all they had to hear was that we were "The Arthritis Foundation Fibromyalgia Support Group", and they were more likely to come. It opened doors.
    I believe that now the Arth. Found. even has a special training course for those who want to lead a support group. I also remember protesting back when they were developing it, that the course was too rigorous for most FMS patients. They had you coming to class for 6 hrs. a day, or something equally ridiculous. If you need the confidence that comes with formal training, you might look into this, even if you want to be independent later on in how you run your group.
    I don't think you absolutely need this help for credibility now, unless you live in a very backwards area. I have another reason why I would steer clear of the Arth. Found. also, and that is because I think it is very clear now that FMS is not really a Rheumatic disease, it just has some prominent symptoms that appear to be Rheumatic, but are in fact Neurological, or NeuroEndocrinological, if you want to be picky. I hope that in the future, the care of FMS patients will be transferred to Neurology and Endocrinology where it belongs.
  5. Shirl

    Shirl New Member

    I was going to tell you to make a post to 'Klutzo'!! But as I see, she is right here when we need her with her great amount of information.

    I don't know 'beans' about support groups, I live in the real boonies in Louisiana, and most people here if they heard the word 'fibromyalgia', they would say; 'say what???'

    I know you have all the information you need now, so good luck with your endeavor, I hope it is successful for you and all those who are looking for a support group in your area.

    Shalom, Shirl
  6. Mikie

    Mikie Moderator

    You have been given some excellent advice here. I would add that there is a wealth of info in the brochures provided by this web site. You can order them by clicking on the very first post on Page One. They will be mailed to you postage paid by ProHealth. My docs love them and have given them all out and I've had to order more. Using these is much easier than reinventing the wheel.

    Go to the Home Page to see whether there is a group near you. I never knew that one of our hospitals already has a support group here until I finally saw a small announcement in the local paper. It's easier to join a group than starting from scratch unless you feel you want to set the agenda yourself. Good luck in any case.

    Love, Mikie

  7. pam_d

    pam_d New Member

    My support group meets at a local church on Saturday mornings---yet it is not a religiously-affiliated group. But I think local churches would be willing to host groups like this.

    What suburb of Philly are you in? My sister (I often wonder if she has FM; never been dx'd, but many symptoms) lives in Havertown...

    Good luck to you in this effort!

  8. MelG

    MelG New Member

    I'm not too far from Medford - Marlton - Cherry Hil area.

    I wish there was something around here. :-(

  9. LisaMay

    LisaMay New Member

    sounds like a great idea! The closest one to me is 30 miles away, taking the interstate at night. My PM driving skills are terrible too. I would love to start one in my area. The info from Klutzo is just what I needed to get started.

    I hope you are a great success! Lisa