THE MILLION
LETTER CAMPAIGN
On May 1, 2005, FMS/CFIDS/ME/MCS sufferers from all over the world
sent letters to media and government addresses listed on this site in an effort
to increase awareness of this illness in time for International Fibromyalgia
Awareness Day on May 12. If you participated and
received a RESPONSE from ANY of
the addresses we wrote to, PLEASE CONTACT MLC FOUNDER, PATTIE CAPRIO, IMMEDIATELY at
ivorycgd@verizon.net.The results are being reported at www.fms-help.com/update.htm
Dear FMS / CFIDS
/ M.E. / MCS
Sufferers,
Have you ever noticed the blank stares you get when you tell people you have Fibromyalgia? They always say, "What's that?!" or "You don't LOOK sick!" If you say you have Chronic Fatigue Syndrome, they say, "Well, I get tired too!!" If you say you have Myalgic Encephalomyelitis (M.E.), few people would know what you are talking about! (M.E. is used in most parts of the world except the United States.) Many people with FMS/CFIDS/ME also have Multiple Chemical Sensitivities (MCS).
Would you say that "Fibromyalgia Awareness" is lacking in our society, despite millions who are suffering?? The GOOD NEWS is that we can have a MAJOR IMPACT on the media and the world BEFORE the next Fibromyalgia Awareness Day (also International ME/CFS Awareness Day) on May 12, 2005!
Have you ever noticed the blank stares you get when you tell people you have Fibromyalgia? They always say, "What's that?!" or "You don't LOOK sick!" If you say you have Chronic Fatigue Syndrome, they say, "Well, I get tired too!!" If you say you have Myalgic Encephalomyelitis (M.E.), few people would know what you are talking about! (M.E. is used in most parts of the world except the United States.) Many people with FMS/CFIDS/ME also have Multiple Chemical Sensitivities (MCS).
Would you say that "Fibromyalgia Awareness" is lacking in our society, despite millions who are suffering?? The GOOD NEWS is that we can have a MAJOR IMPACT on the media and the world BEFORE the next Fibromyalgia Awareness Day (also International ME/CFS Awareness Day) on May 12, 2005!
However, we must get the word
out NOW so we will be READY TO ROLL with our "plan" on MAY 1, 2005!
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 will be posting information on my website at http://www.fms-help.com to keep everyone informed!
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 will be posting information on my website at http://www.fms-help.com to keep everyone informed!
Below is the email I received from
Pattie:
"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
"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. 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 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
This is Dominie again....
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. It may also be helpful to include a photo of yourself, so you are perceived as a real person.Letters should be mailed on MAY 1, 2005 to the following 5 addresses:1. LAURA BUSH, WHITE HOUSE1600 Pennsylvania Ave., NWWashington, DC 20500(Canadians: Scroll down for Canadian addresses listed in teal colored text below)2. Story Editor20/20, ABC NEWS147 Columbus Ave., 10th FloorNew York, NY 100233. FOX NEWS5151 Wisconsin Ave., NWWashington, DC 200164. Story Editor60 MINUTES, CBS NEWS524 West 57th St.New York, NY 100195. Senior Supervising ProducerMONTEL WILLIAMS433 West 53rd St.New York, NY 10019
In ADDITION to the 5 MAIN recipients, other suggested addresses are:Oprah Winfreyc/o Staff MemberHarpo ProductionsHarpo Studios110 N. Carpenter St.Chicago, IL 60607Dr. Phil Show5482 Wilshire Blvd., #1902Los Angeles, CA 90036Barbara WaltersBarwall Productions320 W. 66th St., Floor 2New York, NY 10023NightlineWABC TV c/o Karen DeWitt47 W. 66th St.New York, NY 10023CNBC2200 Fletcher Ave.Fort Lee, NJ 07024Annie's MailboxP.O. Box 118190Chicago, IL 60611Mike Leavitt, SecretaryU.S. Dept. of Health & Human Services200 Independence AvenueWashington, DC 20201Also, you can write your Congressman by visiting:
CANADIANS
Below are
suggested
addresses:
Paul Martin, Prime Minister of
Canada
Office of the Prime Minister of Canada
80 Wellington Street
Ottawa, Canada K1A 0A2
Office of the Prime Minister of Canada
80 Wellington Street
Ottawa, Canada K1A 0A2
Email: pm@pm.gc.ca
Fax: 613-941-6900
Canada Pension Plans
Human Resources Development
Canada
Disability Department
P.O. Box 2710, Main Station
Edmonton, Alberta, Canada T5J
4C2
Hon. George Smitherman, MINISTER OF
HEALTH & LONG TERM CARE
Ministry of Health and Long-Term Care
80 Grosvenor St, 10th Flr, Hepburn Block
Toronto Ontario Canada, M7A 2C4
Email: gsmitherman.mpp@liberal.ola.org
Ministry of Health and Long-Term Care
80 Grosvenor St, 10th Flr, Hepburn Block
Toronto Ontario Canada, M7A 2C4
Email: gsmitherman.mpp@liberal.ola.org
Tel: 416-327-4300
Fax: 416-326-1571
CTV Television Network
Fax: 416-326-1571
CTV Television Network
P.O. Box 9, Station 'O,'
Scarborough
Ontario, Canada M4A2M9
Ontario, Canada M4A2M9
CHUMCity
299 Queen
Street West,
Toronto, Ontario,
M5V 2Z5
There are additional contacts for Canadians at http://www.fm-cfs.ca/MPquotes.html On this site on names of all the MP's that are at least aware of the illness and are in favor of supporting legislation to make changes to support sufferers via health care and disability pensions.
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 (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.
Dominie Soo
Bush
Thanks to all who are supporting the Million Letter Campaign on May 1, 2005:
http://www.painconnection.org/MyEducation/MyEducation_FibroAwareness.asp
http://www.bellaonline.com/articles/art22767.asp
http://www.cfids.org/community/bulletin-board.asp
http://www.talkaboutsupport.com/group/alt.med.fibromyalgia.recovery.info/messages/6513.html
http://www.me-info.nu/_disk24/000013d4.htm
http://njcfsa.org/NEWSLET.html
http://www.co-cure.org/wwwboard/messages/1139.html
http://www.immunesupport.com/library/powersearch2.cfm/T/CFIDS_FM/cat/painhttp://www.MoldAcrossAmerica.com
http://bookcrossing.meetup.com/203/boards/view/viewthread?thread=1210596
http://harmony58.typepad.com/harmony58/2004/12/
http://fmpsc.org/wall/ark/feb-12-05.htm
http://www.fibrocop.org/Million%20Letter%20Campaign.htm
http://216.149.163.247/ubb/Forum1/HTML/005780.html
http://virtualhometown.com/dfwcfids/awareness/aware05.htm
http://www.care2.com/c2c/gettogether/660
http://www.masscfids.org/main/advocacy.html
http://www.care-givers.com/DBArticles/pages/viewarticle.php?id=686
UPDATE: The Million Letter
Campaign was held on May 1, 2005. Thousands of letters were sent by sufferers all over the world. If you participated in the
campaign and receive a RESPONSE from any of the addresses listed on this site,
PLEASE CONTACT MLC FOUNDER, PATTIE
CAPRIO ivorycgd@verizon.net IMMEDIATELY. Responses are being listed at www.fms-help.com/update.htm
DOMINIE'S FIBROMYALGIA & CHRONIC FATIGUE SYNDROME
HOMEPAGE