Copy and Paste What YOU wrote to the Media or Politicians so Others Can Use YOUR Words

Ok, I have written several things, I'll put a couple here!  

To the editor of Health Care Today, a publication that goes to all the doctors, hospitals, social workers, home health care agencies, etc on a bi-monthly basis:

Hello Mr. Dinsmore,

My name is Aimee Shannon.  I am writing to ask you to consider an article for
your May Health Care Today.  May 12th is Fibromyalgia Awareness Day and as a
fibromyalgia patient, I need your help in getting the word out.

Fibromyalgia has long been a confusing disorder.  For years it was considered a
malingerer's disease, frequently referred to by physicians as the "lazy
housewife disease".  Research in the past decade is finally giving a face to
fibromyalgia and all of us who suffer with this daily.

I was a special investigator for Montgomery County Children Services for 12
years. I loved my job.  But 3 years ago, after health complications, I was
forced to go on disability.  Every day is a fight to live and not just exist.  
I deal with severe pain, fatigue, dysphasia, dizziness, nausea, heart and gastro
complications and this is on a good day! 

Since being off work, I realized I needed support, but I couldn't find any
support groups closer than Cincinnati.  So, I have started and run two support
groups, one in Troy and one in Kettering.  We meet monthly to support one
another, share tips, and just to be with others who understand. 

However, one thing that comes up repeatedly and saddens me to no end is when I
hear of a doctor or nurse who isn't updated on the research concerning
fibromyalgia and will tell one of my folks that this is all in their head or
they need to see a psychiatrist.  This happens all too often, leading to
depression, angst and guilt.   We need help educating the community about this
syndrome and how damaging it is to our lives.  

I'm hoping you can help me in this cause.  I would be very grateful to see a
story about fibromyalgia in your publication.  I would be happy to give you any
time or information to help in this.   For me and so many like me, fibromyalgia
is a focus of our lives and educating the world at large, but especially our
dedicated medical providers, is something we can do to help those suffering from
fibromyalgia along side us.

Thank you!

Aimee Shannon, LSW
 

Here's a letter I sent to the Arthritis Foundation in seeking a guest speaker for my groups:

Hi,

My name is Aimee Shannon and I have started and run two support groups for
people living with fibromyalgia.  One group meets in Troy and the other in
Kettering.   I have fibromyalgia myself and was looking around recognizing that
I needed support.  When I couldn't locate a group, I took that as a message to
start one!

I'm interested in having a guest speaker come to my groups to discuss what the
Arthritis Foundation offers and current news on fibromyalgia from your
perspective.   Because my groups are completely non-profit, I don't have the
ability to pay for a speaker.

My Troy group meets on the first Tuesday of each month, at 6:30 p.m. until
appro. 8 p.m.   The Kettering group meets on the second Monday of each month at
3 p.m. until appro. 4:30 p.m.

I'm hoping to have the speaker either in March or April.   Please contact me to
discuss if this is a possibility and what I would need to do to help facilitate
this.   Thank you SO much for your time!

Aimee Shannon, LSW
 

Lastly, this is a letter I wrote to our local news station medical reporter, when the Dr. Oz show about CFS was going to air:

Ms. Mitchell, 
 
My name is Aimee Shannon and I'm living with fibromyalgia.   As you may know, 
fibromyalgia is a chronic syndrome that causes widespread pain, fatigue, and 
multiple other symptoms.  Because of my fibromyalgia, I'm no longer able to 
work.  I was a special investigator for Montgomery County Children Services 
before this syndrome took my efforts of a "normal life" away. 
 
Every day, those of us dealing with fibromyalgia hear someone say this syndrome 
is not real or it's in our heads.  But on Friday, October 23rd, The Dr. Oz Show 
(WKEF Channel 3 at 4 p.m.) will be hosting Dr. Teitlebaum.   Dr. Teitlebaum has 
set the pace for treatment of fibromyalgia, chronic fatigue and other related 
syndromes.  Dr. Teitlebaum's website is www.endfatigue.com.  Those of us living 
with fibromyalgia are hopeful that this show will start a positive trend for 
fibromyalgia and related syndromes to be recognized by the general public. 
 
In addition, a new study was just published linking a retro-virus to chronic 
fatigue and possibly fibromyalgia.   Needless to say, I am beyond grateful for 
all the attention given to this condition and hope to further educate the public 
at large about this difficult syndrome.   Even recently, a DJ in Minnesota 
twittered that "those claiming to have fibromyalgia should be shot" when someone 
who was having difficulty walking due to significant pain and stiffness kept him 
waiting for 7 minutes.   As you can see, we have a long road ahead, but we are 
up to the challenge! 
 
For my part, since being put on disability from the career I loved, I have 
founded and moderate two Fibromyalgia Support groups.  Both meet monthly, one in 
Troy and the other in Kettering. I have about 20 members between the groups and 
we have benefitted greatly from the support we gain through our interactions. In 
addition, I started a FaceBook page called Fibromyalgia Support Groups by Aimee 
and I have 90 fans from all over the globe.  I work to keep everyone updated on 
the news about fibromyalgia and to provide a safe place to vent.   I am also a 
member of WebMD's Fibromyalgia Support Group board and a Health Ambassador for 
WebMD.   Another place where I find great information and support is 
Lumigrate.com.   This website was founded to educate and help everyone to be the 
manager of their health using a colloborative care model.  Nearly half the 
members of this site have fibromyalgia, despite the intent of the site to be for 
all people, those with health concerns and healthy folks! 
 
I'm asking you to consider doing a blog or news article about fibromyalgia and 
chronic fatigue to help spotlight this condition and the pain and suffering we 
endure.  I believe that the time is right to educate the public and to bring the 
national spotlight to the Dayton region.  We need to be recognized and we need 
to reach out to those who are living with this syndrome alone due to our history 
of being degraded and told this was all "in our heads".   
 
I hope to hear from you soon.  I can be reached at XXX or via email at XXX.   
Thank you so very much for your time and consideration! 
 
Sincerely, 
 
Aimee Shannon, LSW 

Hope this helps someone!  I've had really good success, having done a Sunday Front page above the fold article in my local newspaper, a television interview for a local access channel and now going to have an article in the Health Care Today paper!

 I was contacted by a woman who, for 2009's FM Awareness, had a story about her in her local newspaper; single mother, working, children, exhusted, frustrated -- it was a really well done story.  And it very much reflected where most people were at three years ago having been doctored from the 'top down' approach of doctors they turned to for help who had been educated from the top down.  

The woman is inquiring about what is new about FM since 2009, and I basically said 'the way that Facebook has helped people with FM communicate.  In general, the 'cat is out of the bag' about the 'systems' that were/are in power related to what information gets provided to doctors -- that's changing: the public/consumer now has information available to them and they're taking it to their providers and saying "here's something that makes sense to me, I'm learning, please help me by learning this too'.  

At New Years 2007/8 when I was deciding whether to switch away from being an insurance-based occupational therapy service provider to creating a business using the Internet as a basis for the educational information I want my patients/clients/customers to have, then work as a "functional advisor/consultant" and meld my background in health education with occupational therapy, I was aware of YouTube but not Facebook.  We created the video content and website and were immersed by renting an office in a brand new integrative medicine center to get our start, and launched on March 27, 2009.  I had seen that the presidential elections here in the US were being impacted by social media and had help from my employee and our trainer setting up my personal Facebook, and Fibromyalgia Awareness Day 2009 was the day that people 'discovered' Lumigrate.com.  And they fanned the flames to get us the momentum which lead us to develop content with increasingly more established provider 'experts'.  Aimee, above was one of those in our first year or so.  

So this piece, above, is a good one to 'dust off' today, as we head into May and 2012's FM Awareness 'season'.  So it's really cool  to have a request we're going to 'run with' from a small town person in the middle of the United States who was ALSO doing her first 'active about FM awareness' in 2009.  And here we are three years later, joining forces.  

I hope that by having something here to step a person through how to get involved with a newspaper for having a story done, it will help inspire others to do the same.  Truly, education and outreach is a 365 day a year deal, and the BEST way for us ALL to be ambassadors for the cause is to learn the old, established and the new/cutting edge information well enough to articulate it, talk to others, be sure to tell our opinion as opinion and facts as facts (or as the opinions of others, really), and ask others to do the same.  2012's a time of 'activism' and people are now aware that 'the systems' have been a lot of our problems, and we can benefit from creating new ways and systems as well as working at changing the older ones which can be changed.  

Gratefully to all ~~ Mardy