February 2005

 Vol. II, Issue #15

CFS Blue Ribbon          Bergen CFS Support Group Newsletter


Meeting Report

The meeting was held on Sunday February 20, 2005 at Pascack Valley Hospital.  After a question was posed by a new member, there was brain storming session about CFS-friendly physicians in this area.  Given the limited number of doctors who specialize in CFS, a suggestion was offered that many of us find it most helpful to seek a doctor based on one’s most distressing symptoms.  It is hoped that we can develop a list of CFS informed physicians in this area.

 

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.

May 12, 2005 is annual CFS/FM Awareness Day.  It is also International ME/CFS Awareness Day.  There is currently a campaign underway to increase awareness through letter writing.  This is being called the Million Letter Campaign.  This information came from Dominie Bush      

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
May 12, 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!
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
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."  If victims of FMS/CFIDS 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.)

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

 

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                                                                                            January 11, 2005 

http://chronicfatigue.about.com/b/a/138532.htm

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. Richland County, S.C., forensic pathologist Clay Nichols has been quoted as saying that he can't help but wonder how many deaths from hydrogen peroxide infusions have instead been attributed to the natural progression of terminal illness.

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 Grassroots Action Center to contact your representative. Go to www.cfids.org and click on the Capitol Building icon. Follow the easy prompts from there. You’ll find a sample letter that you can use as-is or customize to reflect your own perspective. We’ll track letters sent through our website and report back to the American Pain Foundation and the Partners for Understanding Pain to aid their efforts.

Coming Up

Mark your calendar.  The Spring Conference will be held on April 30, 2005 at Robert Wood Johnson in New Brunswick.  More information will be included in future newsletters.  

Next Meeting

The next scheduled meeting is March 20th from 2-4 PM at Pascack Valley Hospital.  Disability attorney Barbara Comerford will be our guest speaker. 

 

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.