Dear FMS / CFIDS
/ M.E. / MCS
Sufferers,/fontfamily>
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)./fontfamily>
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!/fontfamily>
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!
/fontfamily>
Below is the email I received from
Pattie:/fontfamily>
"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! /fontfamily>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./fontfamily>
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!/fontfamily>
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!/fontfamily>
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. /fontfamily>
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."/fontfamily>
/fontfamily>
Best
Regards,/fontfamily>
/center>
Pattie Caprio
/fontfamily>
/fontfamily>
This is
Dominie
again..../fontfamily>
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! /fontfamily>
Your ONE PAGE letter should
contain the
following:/fontfamily>
1.
YOUR
NAME/fontfamily>
2.
LOCATION (City, State and/or Country)/fontfamily>
3.
OCCUPATION or achievements prior to
FMS/CFIDS/fontfamily>
4.
DATE OF ONSET of your FMS/CFIDS (and what you think caused it)/fontfamily>
5.
SYMPTOMS you suffer from/fontfamily>
6.
HOW this illness has affected your career, finances, relationships,
family, etc. (be sure to mention any LOSSES you have experienced)/fontfamily>
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./fontfamily>
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:
/fontfamily>
1. LAURA BUSH, WHITE HOUSE
1600 Pennsylvania Ave.,
NW
Washington,
DC 20500
(Canadians: Scroll down for
Canadian addresses listed in teal colored text
below)
2. Story
Editor
20/20, ABC
NEWS
147 Columbus Ave., 10th
Floor
New York,
NY 10023
/fontfamily>
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
In ADDITION to the 5 MAIN
recipients, other suggested addresses are:
Oprah
Winfrey
c/o Staff
Member
Harpo
Productions
Harpo
Studios
110 N. Carpenter
St.
Chicago, IL
60607
Dr. Phil
Show
5482 Wilshire Blvd.,
#1902
Los Angeles, CA
90036
Barbara
Walters
Barwall
Productions
320 W. 66th St., Floor
2
New York, NY
10023
Nightline
WABC TV c/o Karen
DeWitt
47 W. 66th St.
New York, NY 10023
CNBC
2200 Fletcher Ave.
Fort Lee, NJ 07024
Annie's
Mailbox
P.O. Box
118190
Chicago, IL
60611
Mike Leavitt,
Secretary
U.S. Dept. of Health
& Human Services
200 Independence
Avenue
Washington, DC
20201
Also, 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
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
Tel: 416-327-4300
Fax: 416-326-1571
CTV Television Network
P.O. Box 9, Station 'O,'
Scarborough
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./fontfamily>
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./fontfamily>
Dominie Soo
Bush/bigger>/fontfamily>

Thanks to all who are
supporting the Million Letter Campaign on May 1, 2005:
http://www.painconnection.org/MyEducation/MyEducation_FibroAwareness.asp/color>
/color>http://www.bellaonline.com/articles/art22767.asp/color>
/color>http://www.cfids.org/community/bulletin-board.asp/color>
http://www.talkaboutsupport.com/group/alt.med.fibromyalgia.recovery.info/messages/6513.html
http://www.me-info.nu/_disk24/000013d4.htm/color>
/color>
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/pain
/color>http://www.MoldAcrossAmerica.com
/color>
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
http://www.sparkle7.com
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