International Fibromyalgia / Chronic Fatigue Syndrome (ME) Awareness 2010, May 12

Mostly, I've noticed that there's not a central place about all things fibromyalgia and people are out there looking around for the best information and missing it often, which is so very unfortunate.  So I want to provide a solution to that with Lumigrate in general but also about the important activities everyone is cooking up for the upcoming awareness day.  So I'd say, having a list of some of the events that will be going on would be good and I'd be happy to support that on Lumigrate.com.

And then what I've done is to get ahold of the Grate Group -- people who have fibromyalgia or who are providers who have businesses that are related to helping people solve it, and am asking them to come HERE and write ideas for what we might 'do' between now and FMS Aware Day to 'do our part' at Lumigrate with awareness.  So I've been approaching those providers to ask if they want to be involved, pulling together a list that I'll be getting out to the people that take on leading a piece of the pie.  

I'm going to give an analogy: Here in Junction two different doctors who weren't talking to each other just because they never had need to went out and started programs that had a lot of equipment costs with them and it just seemed to me that if one said 'oh, if you're going to do THAT, then how about I do THIS, and then we both wont be only half be able to do 'This and That'".  I hope that makes sense. 

My premise of 'don't reinvent any wheels if there are good, true/round wheels out there already -- get behind them instead', as long as they are valid and progressive.  That is part of the 'streamlined' portion of my business model.  FUN is the last part, so I'm looking at making sure there are a lot of FUN people in the list of people that we'll be asking to participate in the discussions that will be part of this awareness effort I'm pulling together. 

I look forward to what everyone writes as ideas about what people are going to suggest and where it goes from here until May 12th and beyond!  ~~ Mardy

PS -- Everyone hopefully knows on facebook to Search on Lumigrate and you'll see TWO fan pages that are specific about Fibromyalgia.  AND we're on Twitter. 

We are holding a seminar/expo in Troy, MI on the evening of Thursday, May 20th 5pm-9pm on Fibromyalgia and Chronic Pain Management at the American Polish Cultural Center.  www.FibroMasters.com

Hello everyone!

I like Cherie's idea of one entity putting out the 'fibro thought of the day' for the rest of us to then copy and paste to our own walls on facebook or other groups.

I was reading a local publication on Friday called "Health Care Today" that is published bi-monthly here in Dayton Ohio.  So I whipped off an email to the editor explaining how May 12th is our day and how great it would be for his publication to do a story on us.   He responded today and it's looking like we are on.   The exciting part of this for me is that this goes to every doctor, clinic, hospital, social service agency and to private people throught this region, about a 12 county area!  

I also hope to have the copy of the interview that I did for a local public access show here in Dayton that I can then send out to EVERYONE I know!   The hostess has fibro and wanted to help spread the word too.

Both of my support groups will also be doing something, we haven't entirely decided what yet, but I'm so proud of my folks, in addition to supporting one another, they all are really interested in setting up booths at health fairs to help spread the F word!

Take care everyone!

Aimee

Good to see your suggestions, Aimee, and I'm hoping that I'll get some information in order and ON Lumigrate ASAP from MD, Pharmacist, etc that you could actually hope might become a place to let these providers know they can come and learn (and people/ consumers can as well then take THAT to their providers). 

Aimee, since you're a really good writer and experienced with getting ahold of the press like you have, would you consider cutting and pasting what you wrote in that email HERE so that others can copy from you?  "Work Simplifaction" and "Energy Conservation" are the OT terms I'd use to document that if you were a patient!  LOL.  

I'll go get a thought of the day out of somewhere and start this off today.  I hope I have sixty thoughts, so if anyone has any suggesions for Thoughts of the Day, please post them.  I'll start a new Topic here in this Forum for it. 

As ALWAYS, Aimee, thanks for tuning and being involved, we're making a difference together, I think!  Mardy

Good to see your suggestions, Aimee, and I'm hoping that I'll get some information in order and ON Lumigrate ASAP from MD, Pharmacist, etc that you could actually hope might become a place to let these providers know they can come and learn (and people/ consumers can as well then take THAT to their providers). 

Aimee, since you're a really good writer and experienced with getting ahold of the press like you have, would you consider cutting and pasting what you wrote in that email HERE so that others can copy from you?  "Work Simplification" and "Energy Conservation" are the OT terms I'd use to document that if you were a patient!  LOL.  

I'll go get a thought of the day out of somewhere and start this off today.  I hope I have sixty thoughts, so if anyone has any suggesions for Thoughts of the Day, please post them.  I'll start a new Topic here in this Forum for it. 

As ALWAYS, Aimee, thanks for tuning and being involved, we're making a difference together, I think!  Mardy

2010 was the year on Facebook that things really changed -- In my opinion, many people had the ability with Facebook to start pages and groups and it created a LOT of activity but also lead to a 'dilution'.  

Lumigrate also was in it's infancy, crawling around and picking up more skills and growing as an entity and needing to try new things and see if it worked or not.  One of those things was to embrace and incorporate direct marketing/network marketing supplement/nutrition product vendors.  I wanted to include MLM/DM/NM for one main reason: It's how a LOT of people are being approached and educated about supplementation of nutrition and a vast majority of the products are not, in my opinion, quality products.  But there are SOME which are, and each one of those has a variety of distributors so you may or may not be getting much education.  So I wanted to have a couple of popular and 'good or better' products which were popular.  

I opted for USANA and JuicePlus, and spoke at length with the distributors I had come in contact with who were networking and marketing on Facebook.  We ended up with a LOT of change after that in the content at Lumigrate and in the end, the information about Juice Plus is still here for people to learn from but the particular distributor ended up causing a backlash.  We lost some supporters of Lumigrate in this growth 'spurt' and transition, unfortunately.  Once I was informed of what that distributor was doing to people on Facebook, in addition to what I had observed or how he eventually interacted with me, I asked for a phone meeting and was ignored; eventually his company had an issue with one of the things he had provided on Lumigrate, which occurs when any of their endorsing professionals' conracts end, and instead of just asking to have the one item removed, he said he no longer wanted to participate on Lumigrate.  

So I changed his identifying information on the Juice Plus topics he posted, but left the interactions and discussion in place because, while it almost bordered on 'FIGHT, FIGHT --- Robin Thomas in the USANA corner with her medical research background and the gentleman in the other corner from Juice Plus', the discussion is VERY informative and only served to underscore my original reason for wanting NM/DM to be represented on Lumigrate.com: The distributor's personality, manners, skills and knowledge have so much to do with what the consumer/customer gets from the experience.  

I knew going into Lumigrate that there would be an evolution and growth and it has been somewhat like I envisioned and also very different.  In April 2010, I started to carry out what was discussed above and I just wasn't seeing it getting much response -- in large part because there were so many 'activists' out there in the FM FB community.  So I switched gears and focused on having three of the providers at the time who were knowlegeable in pain, FM, CFS do a podcast together on one of their websites.  (Our podcasting studio was delayed in construction until fall of 2010).  That was very successful.  Only one of those three are still 'active' with Lumigrate.com, again just part of the process of being a new organization, they take 2-3 years to settle in. 

But I wanted to have this topic from the past 'rise up to the surface' for any who are getting ideas for FM Awareness from Lumigrate.com.  Look for other topics in this forum, and in particular our NEW FMAwareness 2012 Topic(s). Thanks for beign along for the ride for one read or sharing/spreading the word, or writing, etc.  We're all in this together and our collaborations, over time, are making a difference.    ~~ Mardy