Here is the text of an email I received. I belong to this newsgroup.
It's kind of long...but I think it's important.
Thanks all.
Today, May 12, is Fibromyalgia Awareness Day! Have you ever noticed the blank stares you get when you tell people you have fibromyalgia? They always say, "What's that?!" If you say you have chronic fatigue syndrome, they say, "Well, I get tired too!!"
So, I am VERY excited about an idea that a newsletter reader has come up with to increase awareness of FMS/CFIDS. I am giving my full support to this effort, because I can't think of a better idea--and I am planning to put a page on my website at fms-help.com to keep everyone informed about this!
Below is the email I received from Pattie this week:
"I am trying to get national recognition for the pain sufferers of FMS/CFIDS. We need patients who are willing to write about their experience with this disorder. We plan on having a MASS mailing to go to the White House, Oprah Winfrey, Montel Williams, and 60 Minutes on May 1, 2005, so that the letters reach their destination by Fibromyalgia Awareness Day May 12, 2005.
We are hoping that a MILLION letters will be sent! Those who want to participate need to write only one letter and just change the address at the top to go to each of the recipients.
The laws are way too tough for people to win their disability cases, because FMS/CFIDS is an invisible disease. In only 3 days I have received 400 emails from sufferers of the FMS/CFIDS disorder who are enthusiastic about this idea. It should not cost more than $1.48 (USA) to mail these letters for each patient. We may even get this aired on television!
In order to win my SSD, I had to write letters to my Congressman, State Senator and State Representative, plus I had to get a lawyer to help me with my case. For most lawsuits, I am told, by many responders to my email, that there is no clinical proof that trauma can cause FMS! This is not so much about me. This is about millions of sick people forced to go through the barbed wire fence to get some help. Some people never get help from lazy lawyers who think these are nuisance cases!
What I need from you is to post this message on newsgroup bulletin boards, write to fibromyalgia websites and talk to other FMS/CFIDS sufferers and doctors about this mass mailing. It would cost them just a little time for their story of how they became ill--or for a doctor to offer clinical evidence of this illness.
Letters need to be ONE PAGE ONLY. We all need to send the letters out ON THE SAME DAY as everyone else so that this gets noticed. The date we are aiming for is May 1, 2005, so that the letters are received in time for Fibromyalgia Awareness Day on May 12, 2005. The more letters that are sent, the better the chance will be for all of us."
Best Regards,
Pattie Caprio
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This is Dominie again....
Pattie is very ill, so she has requested that we not contact her directly, since she would be overwhelmed with email. Please direct your comments or suggestions to me at [email]dom@fms-help.com<br[/email] />
If all victims of FMS/CFIDS will mail their letters on May 1, 2005, we will speak as ONE VOICE and hopefully capture national attention for this illness. This will be much more effective than anything else we can do as individuals!
Your ONE PAGE letter should contain the following:
1. YOUR NAME
2. LOCATION (City, State and/or Country)
3. OCCUPATION or achievements prior to FMS/CFIDS
4. DATE OF ONSET of your FMS/CFIDS (and what you think caused it)
5. SYMPTOMS you suffer from
6. HOW this illness has affected your career, finances, relationships, family, etc. (be sure to mention any LOSSES you have experienced)
7. WHAT you are asking for: e.g., recognition of this illness, for doctors and lawyers to take FMS/CFIDS seriously for disability cases, for understanding from family and friends, for money to be spent on research for a cure, for media coverage, or whatever else comes to mind.
(Most of us could write a book about our illness, but please limit your letter to one page.)
The recipients of our letters will be:
1. The White House
2. Oprah Winfrey
3. Montel Williams
4. 60 Minutes
(Addresses of where to send these letters will be on my website at fms-help.com as we get closer to the target date of May 1, 2005.)
If you have suggestions about WHAT TO CALL THIS IMPORTANT EFFORT, please email me at
dom@fms-help.com I was thinking that "THE MILLION LETTER CAMPAIGN" would be good, or maybe "VICTIMS OF FMS/CFIDS UNITE". PLEASE SEND ME ANY SUGGESTIONS! Pattie is an accomplished graphic designer who will come up with a logo which will be sent to FMS/CFIDS website owners to put on their sites if they support of the letter writing campaign. We need to build enthusiasm and momentum in the fibromyalgia community between now and May 1, 2005!
Please tell your fibromyalgia support groups, friends with FMS/CFIDS, and even doctors who have experience with FMS/CFIDS patients and understand this condition. Feel free to forward this email to others you know with FMS/CFIDS or you can post this letter to fibromyalgia newsgroups online. We need to get the word out!
I don't know of a better way to accomplish our goal of FMS Awareness! It will take just a little effort from each of us in telling our own unique FMS/CFIDS story in "one page" form and sending it to people who have power and influence in our society. Remember, we are doing this not just for ourselves, but for millions of sufferers worldwide.
May God bless our efforts!
Dominie Bush
dom@fms-help.com
P.S. Due to heavy email volume, I am not able to answer all of my correspondence. I do read all of my email and will forward your suggestions to Pattie so that she can design a logo for us.
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