May 12th is International Fibromyalgia and Chronic Fatigue Syndrome Awareness Day. This annual event began in the early 90s. Over a decade later, millions of people across the globe are afflicted with these conditions, but tens and hundreds of millions more, don’t even know what Fibromyalgia and Chronic Fatigue Syndrome are.

Date:   2/26/2005 10:01:28 PM ( 19 y ago)

"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 (First Lady), ABC News (20/20), Montel Williams (who has M.S.), 60 Minutes (Mike Wallace has had CFIDS), and FOX NEWS
on MAY 1, 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 $1.85 (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 at the same time and just prior to Fibromyalgia Awareness Day (International ME/CFS 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


If all victims of FMS/CFIDS/ME (and their family members and friends) 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.)

1. THE FIRST LADY, WHITE HOUSE
1600 Pennsylvania Ave., NW
Washington, DC 20500

2. Story Editor
20/20, ABC NEWS
147 Columbus Ave., 10th Floor
New York, NY 10023

3. FOX NEWS
5151 Wisconsin Ave., NW
Washington, DC 20016

4. Story Editor
60 MINUTES, CBS NEWS
524 West 57th St.
New York, NY 10019

5. Senior Supervising Producer
MONTEL WILLIAMS
433 West 53rd St.
New York, NY 10019

CANADIANS: Please use the following address instead of the White House (#1 above): CANADA PENSION PLANS, HUMAN RESOURCES DEVELOPMENT CANADA, DISABILITY DEPARTMENT, P.O. Box 2710, MAIN STATION, EDMONTON, ALBERTA,CANADA,T5J 4C2

In ADDITION to the 5 MAIN recipients listed above, other suggested addresses are:

Dr. Phil Show
5482 Wilshire Blvd., #1902
Los Angeles, CA 90036

Barbara Walters
23852 Pacific Coast Hwy., Suite 401
Malibu, CA 90265

Annie's Mailbox
P.O. Box 118190
Chicago, IL 60611

The Tony Danza Show
Attn: Human Interest Stories
Ansonia Station
P.O. Box 230767
New York, NY 10023-0013

Also, you can write your Congressman by visiting:
http://www.arthritis.org/advocacy/priorities/priorities_contact.asp

Oprah Winfrey is not included in this list, because she no longer accepts unsolicited input for her shows.

We don't want to DILUTE the QUANTITY of our letters to the MAIN recipients, so if you can only send 5 letters, please send them to the 5 MAIN addresses only (numbered above).

We are asking FAMILY MEMBERS AND FRIENDS of those with FMS/CFIDS/ME to write letters telling how this illness has affected that person's life--the difficulties this chronic invisible illness poses for normal living--how they have been treated by doctors, employers, media, insurance companies and disability attorneys--the misunderstanding of family, friends, etc. This will maximize the number of letters that go out on May 1, 2005. It is something that family and friends can do to HELP the person they care about. It just takes a little time, 5 stamps and 5 envelopes. (If you have a friend or loved one who wants to write a letter, consider providing them with the stamped, addressed envelopes, so they will be ready to mail on May 1.)

Please use a return address on the envelope but do NOT put any indication of what the letter is about on the envelope, or it may be discarded. We want all the letters to be opened.

We are aware that our target date of May 1 is a Sunday, but it was easier to remember than April 30 or May 2.

We need to build enthusiasm and momentum in the fibromyalgia community between now and MAY 1, 2005! Please tell fibromyalgia support groups, friends with FMS/CFIDS, and even doctors who have experience with FMS/CFIDS patients and understand this condition. Forward this information to people in your email address book or post it on fibromyalgia newsgroups. We need to get the word out!

I don't know of a better way to accomplish our goal of FMS/CFIDS 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.

 

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