Vol. II, Issue #15
Bergen CFS Support Group Newsletter
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
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.
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
CANADIANS: Please use the
following address instead of the White House (#1 above):
Other suggested recipients are:
Dr. Phil Show
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
Dominie Bush email@example.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!]
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.
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.
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 .
CFIDS Association of America supports this bill and invites you to use
The Spring Conference will be held on
The next scheduled meeting is March 20th
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 firstname.lastname@example.org or email@example.com. Subscription problems: Nancy Visocki at firstname.lastname@example.org. Editor: Pat LaRosa at email@example.com.