Bergen
CFS Support Group Newsletter
February 2005
Vol. II, Issue #15
Bergen
CFS Support Group Newsletter
Meeting
Report
The meeting was held on
The remainder of the
meeting was devoted to a presentation of Dr. Bell’s portion of the
NJCFSA fall conference video. Those in
attendance were interested and encouraged by the research he is
conducting on blood volume reduction in the CFS patient.
Dr. Bell addressed the symptoms caused by the volume deficit and
how unique the effects are in the person with CFS.
Some of the members related to the scenarios he described and
they are eager for any follow-up materials
he might make available on this study. DR.
Bell has also posed an in office test that he feels might be as
reliable as the trigger-point test that is used to diagnose
fibromyalgia. The posed test involves
standing motionless for a period of time and comparing blood pressure
readings during that time. Members of the
NJCFSA who are interested in viewing the presentation may borrow the
fall 2004 conference video from the NJCFSA library.
Information is available at www.njcfsa.org.
(Materials are available only to NJCFSA members).
"If robbery is the taking without
permission, CFS could be the greatest thief of all." --David S. Bell, MD
ANNOUNCEMENT
We have a schedule change
for March. We are excited to announce that
Barbara Comerford, Esq. has offered to speak at our meeting. For those of you who may not be familiar with
Barbara’s work, she is an attorney who specializes in disability law. In recent newsletters we posted the results of
the Unum lawsuit which may have affected many with CFS.
Barbara has spoken to our group on other occasions and we are so
grateful that she is once again sharing with our group.
We hope you will be able to attend what is sure to be a very
informative session. If you have questions
that you may wish to have addressed that day, please send them to Anne
Gilmartin.
CFS
Awareness Day
This
information is being repeated as a reminder to all that it is important
to increase the awareness of CFS and FM.
Dear FMS/CFIDS
Sufferers,
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!!"
Would you say that "Fibromyalgia Awareness" is lacking in
our society??! 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
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 (
This is about millions of sick people forced to go through the
barbed wire fence to get some help.
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
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
2. Story Editor
20/20, ABC
NEWS
3. FOX NEWS
4. Story Editor
60 MINUTES,
CBS NEWS
5. Senior
Supervising Producer
MONTEL
WILLIAMS
CANADIANS: Please use the
following address instead of the White House (#1 above):
Other
suggested recipients are:
Dr.
Phil Show
Barbara
Walters
Also, you
can write your Congressman by visiting: http://www.arthritis.org/advocacy/priorities/priorities_contact.asp
But please remember that
we don't want to dilute
the quantity
of our letters to individual recipients, so if you can only send 5
letters, please send them to the 5 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.
Dominie Bush
dom@fms-help.com
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. [WEBSITE OWNERS: Please feel free to
put this logo on your site if you are supporting the
campaign!]
Literature
Review
Hydrogen Peroxide Therapy
Linked to Patient Death
Most
people are familiar with the foaming action that occurs when hydrogen
peroxide it put on an open cut or sore. That foaming action is why
proponents of "oxidative" or "hyperoxygenation" therapy (the common
names for IV hydrogen peroxide infusions) think it works. Such
practitioners believe that an infusion of hydrogen peroxide delivers an
"oxidative burst" that can ease or cure the oxygen deficiency that they
believe is the cause of diseases like Chronic Fatigue Syndrome,
Fibromyalgia, multiple sclerosis (MS), many cancers, and AIDS.
While
thousands have received this non-traditional treatment, recent
developments are showing that hydrogen peroxide infusions are not
without risk. In fact, one physician in South Carolina faces murder
charges because one of his MS patients died following a hydrogen
peroxide infusion -- an action that threatens the future of this
treatment, which the International Oxidative Medicine Association
estimates is given more than 100,000 times a year by more than 200
participating physicians.
Coroner
Gary Watts attributed the "murdered" patient's death to massive
internal bleeding directly caused by the hydrogen peroxide infusion he
says created bubbles in her bloodstream that led to multiple organ
failure and cardiac arrest. A lawsuit brought by the patient's family
against the physician states that the doctor ignored that the patient
was exhibiting clear signs of "acute hemolytic crisis," failed to order
a blood work-up for the patient, or to refer her to another physician.
The physician, who acknowledges that hydrogen peroxide infusions can
destroy red blood cells after repeated treatments, denies the
allegations set forth in the lawsuit.
Holistic
practitioners who support such treatment claim that these actions (the
murder charge and lawsuit) are a part of a conspiracy aimed at
alternative treatments because the patient was taking at least two
FDA-approved drugs that could have attributed to her death.
Grassroots
Action
This letter is
reprinted from the www.cfids.org
online newsletter
Take Action Against Pain
The
National Pain Care Policy Act (H.R. 1863) is the most comprehensive
pain care bill ever introduced in Congress. Representative Mike Rogers
(MI-8) is the bill’s sponsor; 42 other members of Congress have signed
on in support. The bill was referred to committee, but stalled there.
The American Pain Foundation and Partners for Understanding Pain are
working with Rep. Rogers to get the bill moving again. Americans
concerned about the lack of and/or access to treatment for pain should
contact their representatives to express their support for this bill.
Copies of these messages will be delivered to Rep. Rogers as well,
impressing upon him the need for his continued leadership on this
important bill. You can read the entire bill at http://www.cfids.org/cfidslink/2005/pain-bill.asp .
The
CFIDS Association of America supports this bill and invites you to use
the
Coming
Up
Mark your
calendar.
The Spring Conference will be held on
Next Meeting
The next scheduled meeting is March 20th
from
This newsletter is intended for CFS patients in the area of this support group. The purpose is to share information and support. If you have questions about meetings please contact Group Leader Anne at annielaurie2@optonline.net or annielaurie617@yahoo.com. Subscription problems: Nancy Visocki at nvisocki@verizon.net. Editor: Pat LaRosa at pat@larosas.net.