December 2006

Vol. IV, Issue #35

Ribbon Bergen CFS-FM Support Group Newsletter

Meeting Report

December 17^th - We may all have CFS-FM but we know how to have a party. The sharing table was full of delicious offerings. If we felt better, we would be able to walk off the extra calories. A professional caterer could not have organized a nicer variety of offerings.

Our guest of honor was Anne Gilmartin, who came to celebrate with us at the holiday party. She did not know that those in attendance were also there to thank her for all she has done for the Bergen CFS-FM group. As most of you know, Anne stepped down as leader this fall. We all experience ups and downs with our illness and Anne was in one of her sicker times. She needed to step back and take care of herself. Anne was presented with a pendant as a token of everyone’s appreciation. Seasoned members enjoyed visiting with her, and new members had a chance to meet the person whose name they have heard many times at the meetings.

2006 has come to the end and we welcome 2007 with renewed hope that CFS will be more widely accepted by the medical community, that researchers will discover a cause and more importantly, appropriate treatment for this illness. A new name for the illness would also be nice.

CFS Organizations

Bergen Support Group, NJCFSA, CFIDS…are they all the same? Which should I join?

Sorting through the many groups can be confusing, which is why we occasional re-explain the functions of a few major ones.

The Bergen CFS-FM Support Group – This is the group that meets at Pascack Valley Hospital once a month. It provides a place to meet others with CFS and to share information. This newsletter that you are reading is sent monthly as an additional support and as a contact with those who might be too sick or otherwise unable to attend the meetings. Membership is free.
The NJCFSA – This is our parent organization. In addition to support groups, the NJCFSA educates, exhibits, conducts conferences and is involved in advocacy. For a more detailed look at the activities of the NJCFSA go to www.njcfsa.org. Membership is $25 a year and includes a printed newsletter (3x per year) as well as NJCFSA lending library privileges. We strongly urge people to join.
CFIDS Association of America – This is a National organization. We are not affiliated with it, but often become involved in their projects – particularly the Advocacy efforts. Their site is www.cfids.org. Membership is $35 a year and includes the printed publications: The Chronicle and the Research Review. The CFIDS organization plays a major part in the current awareness campaign and the traveling photo exhibit that will be present at the NJCFSA Spring Conference in March 2007. On their website you can become involved in Grassroots Advocacy at the click of your mouse. This is also a valuable organization and you might wish to consider membership.

Information

Is It Fibromyalgia or Chronic Fatigue Syndrome?

http://chronicfatigue.about.com/od/overlappingconditions/p/fibromyalgia2.htm?nl=1

It's often difficult to distinguish between fibromyalgia and chronic fatigue syndrome. Are they unrelated, siblings or twins? Researchers and specialists are still trying to determine the answer to this question. Some experts believe they are two completely separate illnesses; others think they are two distinct disorders with many similar symptoms; still others feel they are different facets of the same disorder.

To complicate matters, a significant number of people with FM also have CFS and vise versa. In a September 2002 article in Fibromyalgia AWARE, a publication of the National Fibromyalgia Association, Charles W. Lapp, MD, CFS/FM expert and researcher, states that "about 70 percent of persons with CFS meet criteria for FM and about 70 percent of persons with FM also meet criteria for CFS."

Central Sensitivity Syndromes: Muhammad B. Yunus, MD, a pioneer FM researcher, believes that there is a large group of illnesses with overlapping features that he calls "Central Sensitivity Syndromes." What they all have in common is a sensitization of the central nervous system. Under this broad CSS category, he lists disorders such as FM, CFS, migraines, irritable bowel syndrome, TMJ, multiple chemical sensitivities, restless legs syndrome, myofascial pain syndrome, and others. All of these illnesses have some symptoms that overlap one another.

FM and CFS Similarities: Fibromyalgia and chronic fatigue syndrome share many of the same symptoms, such as: muscle and/or joint pain, debilitating fatigue, headaches, memory loss, difficulty with concentration, forgetfulness, depression, numbness and generalized weakness. Other clinical similarities include:

Reduced blood flow in the cerebral cortex and midbrain
Suppression of the hypothalamic pituitary axis
Disturbed Stage 4 sleep
Reduced levels of growth hormone
Lower than normal serotonin levels
Evidence of a genetic component

FM and CFS Differences: The simplest explanation of the difference between FM and CFS is that with FM, pain is the most predominant symptom, while with CFS, extreme fatigue with is most predominant.

Additional distinct differences include:

Substance P (a neurotransmitter that transmits pain signals) is elevated in FM but not CFS.
RNaseL (a cellular antiviral enzyme) is frequently elevated in CFS but not in FM.
Often CFS will be triggered by a flu-like or infectious illness, while FM is more often triggered by some kind of trauma to the body (i.e., accident, injury, surgery, etc.).

How Is a Diagnosis Determined? Because the two illnesses are so similar, frequently the diagnosis you receive will depend upon the doctor you see. A rheumatologist is more likely to give you a fibromyalgia diagnosis, whereas if you consult an infectious disease specialist, you’ll be more apt to receive a diagnosis of chronic fatigue syndrome. If your doctor is a general practitioner or a family practice physician, your diagnosis may depend on which illness they are more familiar with.

For the specific diagnostic criteria of each, see:

Sources:
Lapp, Charles. “Chronic Fatigue Syndrome vs. Fibromyalgia.” Fibromyalgia AWARE. September-December 2002: 72-73.
Yunus, Muhammad. “Central Sensitivity Syndromes: The Concept for Unifying.” Fibromyalgia AWARE. May-August 2002: 41-45.

Updated: November 29, 2006

From our friends at CF Alliance

The CF-Alliance Holiday Smile Event is an international holiday card exchange program for CFS, ME, FM and related illness sufferers and caregivers.

If you would like to mail a card and exchange happy holiday wishes with someone else, please mail or email your name and mailing address to the
CF-Alliance: info@cf-alliance.com.

Please sign up by December 31, 2006.

*For Details: http://www.cf-alliance.com/id27.html

“Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow".

Question from a member

One of our members in the Bergen County area asks: What do all of you do with the old toys that your kids no longer use? And further, can any of you suggest a way to get these hardly used things to kids who would really use and enjoy them? I don't want to sound ungrateful but it just doesn't seem right that my little fellow gets way more stuff than he needs when there are so many other kids who probably get very little. I'm sure all of you have similar feelings on this and I'm trying to figure out a way to avoid this situation in the future. In the meantime, any suggestions would be really appreciated.

[Editor’s Note: If you wish to respond, send a note to me pat@larosas.net and I will forward it to the member.]

Next Meeting

The next meeting is scheduled for Sunday January 21^st at Pascack Valley Hospital from 2-4 PM. The details of the meeting are not yet confirmed. We may possibly have the disability speaker who was unable to attend the November meeting. The topic will be included in the online reminder the week before the meeting.

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: Pat LaRosa at pat@larosas.net, Nancy Visocki at ngv.njcfsa@verizon.net, Judy Machacek at judymachek@msn.com or Frank Kawa at 201-768-4111