What the Heck are They Talking About: Neurological CFS: Million Letter Campaign May, 1, 2005

Not a number? Not just a statistic? Help put a human face on the neurological disorder, Chronic Fatigue Syndrome and rheumatological disorder, Fibromyalgia. PWC Pattie Caprio is asking all of us (hopefully at least a million) to write a one page letter to be sent to five or more media outlets all on May 1, 2005.

According to Pattie, everyone needs to send the letters out ON THE SAME DAY as everyone else, 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.

Although letters have been requested for survivors of CFS/ME and Fibromyalgia, I would encourage the people that love us and care for us to write a letter also describing these disorders from either their point of view or to advocate for someone too ill to advocate for themselves. You can do it. You have four months to work on it a little bit at a time. Ask a friend or neighbor to address the envelopes for you. Or in my case help me figure out print for the umpteenth time. LOL.

Pattie requests:

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 - oh yeah, and keep it under one page. LOL)

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.

Being a wise woman, Pattie notes that most of us could write a book about our illness, assuming we have the energy, but still asks us to please limit our letters to one page. Instead of a chatty letter, you may wish to send a bulleted outline of the above points. Note: Montel Williams has MS and Mike Wallace of 60 Minutes has had CFS/ME.

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

Other suggested recipients are:

Dr. Phil Show

5482 Wilshire Blvd., #1902

Los Angeles, CA 90036

Barbara Walters

23852 Pacific Coast Hwy., Suite 401

Malibu, CA 90265

Also, you can write your Congressman by visiting:

http://www.arthritis.org/advocacy/priorities/priorities_contact.asp

Dominie Bush adds:
dom@fms-help.com

Please remember that we don't want to dilute the quantity of our letters to individual recipients, so if you can only send five letters, please send them to the five MAIN addresses listed above. Oprah Winfrey is not included in this list, because she no longer accepts unsolicited input for her shows.

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 anyone you know with FMS/CFIDS 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.

P.S. Million Letter Campaign T-SHIRTS & SWEATSHIRTS are great for individuals or support groups! Pattie designed the logo which appears at the top of this page and also on the shirts.

For more information please go to:

http://www.fms-help.com

Sorry, I still haven't found a way to add hotlinks to my posts. :(
TADAAA! I changed over to Netscape 7.2 and suddenly hotlinks were available. Isn't technology a marvel. Ooops I think I just dated myself.

What the Heck are They Talking About: Neurological CFS

Million Letter Campaign May, 1, 2005

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