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Has anyone started a local support group?

Discussion in 'General ME/CFS Discussion' started by Tammy, Jun 18, 2014.

  1. Tammy

    Tammy Senior Member

    New Mexico
    I was thinking about starting a local CFS/ ME/ FIBRO support group but before I did this I wanted some feedback from others as to their experience, tips, etc. etc. I think the first thing I would have to do is advertise just to see if and how many people would be interested............I don't live in a big city so don't know if this is even worth it. Just curious as to other's experience with this if any.
  2. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Concord, NH
    The way many people help "advertise" is via The problem with that website is that it cost money to the organizer, and the website is not the best, but very popular for many different groups!


    PS There are books out there in regards to this, and I think some specifically for your illness.
    Tammy likes this.
  3. SOC

    SOC Senior Member

    I think a support group is a great idea. Just be prepared for the fact that it is likely to attract people with fatigue and/or mental illness, not just ME or fibro patients. How would you control or manage that? There are also people who love joining support groups but just want to whine and get people to help them rather than share support with other sufferers. As long as you are prepared to deal with those things, a support group can be a big help.

    If fibro is on your radar for this support group, you might want to check with your nearest hospital/clinic for an existing fibro support group. That way the hospital staff is doing most of the hard work of organizing, they have a location so you don't have to invite strangers to your home, and you can see how one is managed before you try to handle organizing one yourself.
    Tammy likes this.
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque


    I ran a dysautonomia support group. It was pretty specific as to who could join. The main problems I encountered:

    1) a huge amount of work!
    2) lots of members--but most too sick to come to meetings!
    3) we had speakers, which was very good, but hard to organize.

    Locally now, we have a loose network of patients who keep in touch and meet in 2's and 3's. This works pretty well. We are "there for each other" when needed. We have tried all getting together at once but people are often not well enough, schedules, families....

    Good luck! But I would limit the membership to something less inclusive as Fibro patients can have quite different needs and profiles.

    SOC, Tammy and Purple like this.

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