What Happens in Grand Junction Doesn't STAY in Grand Junction - Groups Communicate (Support, Education)

In November I received a call from one of my best friends in Grand Junction, who said 'I saw something in the paper you might want to know about".  Due to the holidays and busyiness, I called last week -- just in time to get in on the do-over meeting, as people were so scattered with the holidays the guys starting this group here realized they needed to wait until this new year to get started.  It was interesting to me that it was two GUYS who were doing a group -- it's rare!  I called the first name that was listed in the ad in the local paper, which was Alan.  He's partnered with Bill -- both are mature, professional guys who have had chronic fatigue syndrome for a while and who have found a DVD purchased from a gentleman in London very helpful.  They're wanting to share their experiences and resources and have taken it upon themselves to organize a group to meet (for now in the Holiday Inn Express near our mall in Grand Junction, asking a small donation to cover the cost of the room). 

I got on the phone and called someone who I figured would want to know and she called two others, so there were four of us there, three of which were part of the Fibromyalgia Forum that I helped form and host 2-3 years ago.  So I am PLEASED to say that my goal in helping more people by having an online progressive health information website can serve them now. 

What I'm going to write here is intended to help them and any local people with CFS and FMS who might be fortunate enough to find their way to the group AND to help anyone in the world who is considering doing something similar.  I'll establish a Topic in this portion of the website for finding a group, and then each group leader can start their own 'Topic' in order to correspond with their group.  Hard to explain, but if you see how we do it once we get it going with this local group, I think it will make sense. 

This is my experience an input about a group:

You'll never find a day and time that works for everyone.  Give some thought to what that will be, because with our group, we changed the location and time well into the first successful year and lost most of the people.  CFS is a tricky one due to the nature of 'energy' -- and THAT is why I really am hopeful people will utilize this portion of Lumigrate for their groups, since then people can 'do the next best thing to being there' if they really cannot make a meeting.  It is very important to keep social and get out, but it also is important to monitor when you're really able to do that and not and have that be your most important guide.  I've already had one woman who cannot come because Monda's belly dancing night.  It also is family night for LDS, which is a major religion in western Colorado due to our proximity to Utah (it is the fastest growing religion in the world, by the way, per Time magazine).  The IMC does seminars on Mondays.  Monday night football is on Mondays.  I think Monday might not be the best night to choose and in the past my forum group told me that Mondays and Fridays were bad because they were still getting over or ready for the weekend. 

Time of Day:  I talked to several medical professionals who wanted to attend but they see patients until 6 pm.  If you get later than that though people are too tired, but for those that work, sometimes a 6:30 or 7 start time allows them time to go home and eat and rest a bit and come back out.  The very successful fibromyalgia support group in Junction meets on Thursdays at 7.  (or did, I haven't kept up with them). 

Location: Central to who you want to appeal to -- easy off the freeways. 

Amenities:  Seating surfaces for those with FMS, making them feel comfortable and standing if they want to.  In Berkeley when I spoke at a chronic pain conference they had mats on the floor for people to lie on.  People with chronic pain attended a FULL DAY conference because some smart person organizing it thought to have mats on the floor.  I've never spoken to a group that had people laying at my feet, but it actually broke things up nicely as it was very informal feeling.  (to make up for the THREE professional cameras on me).  It was the first time I've been well enough to do public speaking and have a program to speak about in years, aside from educating doctor's groups, and I have to say, I liked it!)  Having water available might be nice ... people bring their own water typically. As a group gets to know each other, maybe spending some of the extra money from your till on foods that everyone would be able to eat.  Fruit and chocolate maybe.  That opens the door for them to bring things too if they make something to share.  Many with CFS have food allergies so this is a tricky one, but people commune with food.  And in evening sessions, some people have been running and really are needing a bit of nourishment in order to pay attention and contribute their best.

Being able to effectively communicate.  A website is essential.  So -- here you go!  Please use it, it's why I created it!  Not only can each group communicate it's details of where they are meeting, but group leaders can come in and see what the other groups are doing and 'cross polinate' information.  Synergy for health and wellness information. 

Marketing:  There are two papers in Junction, and both allow free submissions to Community Calendars.  This can be done online.  The 'smaller' paper actually got us more people, partly because of the way their calendar is layed out I think.  We started our group with hand-picked formative members who helped us shape the structure of the group, but that was as Dr. Young and I had discussed for the three months we met related to having a live group.  We wanted the group to eventually take on ownership and maintenance of it.  With the pain and fatigue population with our group at that time, it just didn't happen, which had to do with some circumstances with the key people at that time.  Flyers given to physicians ended up creating a problem because they only thought to give them to their 'difficult' patients, so every week our group had a new angry, frustrated person coming who just needed to vent.  So the 'education' of the group's long-standing members turned to our helping them process and get redirected to what we were thinking we were there for.  Having someone as a resource to direct those people to would be helpful.  I tried very hard to find a qualified therapist who would agree to talk with those people and they were all too busy OR not experienced enough yet with chronic pain conditions.  You will see that I've created in the Forum / Fibromyalgia, areas for 'venting', 'crying' and humorous things, so that is a resource you all can use for now as well, but I also very much suggest that each local group leader be networked with behavioral health resources AND the county mental health and suicide hotlines and all that.

Make it free? How much to charge.  It is my personal opinion that generally having a small charge for things allows a group to be automatically set up to be those ready to take things seriously.  However, there are people who would be wonderful contributors who cannot afford small fees and so the group's policy might be to have that member do something in time trade in order to have the fee waved.  Sometimes the people who can afford the least (those on social security disability OR even moreso, those who have not yet been accepted with that benefit and are REALLY in financial messes typically) have the time to do some work for a group.  Others who are working don't have so much time but can afford to pay. 

Confidentiality.  Each leader needs to have some idea of ground rules.  With our group we let them have input about it and it was helpful that Dr. Young and I were medical professionals, as sometimes what goes on in groups related to medical conditions is pretty involved.  Each group will find it's own boundaries and 'personality'.  The presumption was, however, that things were much like a 12-step group so I suggest y'all check into what THAT entails and decide if that's how you want your group to be.  Our group dissolved when someone joined who really wanted a 12 step format and we weren't based nor wanting to operate on that.  It was summer and it was HOT at noon and I needed to concentrated on the online creation you now see.  Keep in mind that ALL these things can be posted in your section of Lumigrate and as time goes on you can cover it in whatever you post each week (if that's how you chose to use Lumigrate for your group).  That way at least you have covered it somewhere.  Handouts might be helpful at the meeting as reminders and for new people.  That's the biggest challenge, I thought, was keeping it deep and moving for the longer people and then incorporating the new people and getting them on your page rapidly when the meeting started.  So hopefully Lumigrate will be a tool for that (for those who have computer and use it).

If anyone has any questions,  please message me.  You can do that through the website function and then I know it's someone with a question about the website, so that is preferable. 

info@lumigrate.com also gets to me at this time, or in the future to whomever is the appropriate person to route to.

Good Luck in your group venture and from one who has been in chronic fatigue and fibromyalgia woes before, thanks to those who are 'weller' who can take on the energy it takes to do a group.  It's a blessing to be in a position to help others and so to those who share with that spirit, I extend my kudos and appreciation.  It's what I've done with Lumigrate.  ~~ Mardy Ross, Founder, Lumigrate

PS -- PLEASE as anywhere in the website, COMMENT below .. it's how we know and grow!