November 2008

                                                                                                                         Vol. V, Issue #56

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          Bergen ME/CFS-FM Support Group Newsletter

 

Meeting Report

Our guest speaker was Christine Clifton who encouraged all of us to become our own "Power Plant".  Christine has been coping with CFS and Fibromyalgia for many years and like many of us, has had to create a new lifestyle which acknowledges her limitations, but still brings her personal happiness.  As a professional Life Coach, Christine has created the concept of The Power Plant which encourages all of us to set our own needs first, acknowledge our limitations and most important, set new standards for "normal". By following these  realistic guidelines and common sense, we can still help others, but we regain control over our own lives.  This can also reduce our stress and guilt and preserve ourselves so that we can use our limited energy  in a more positive and productive way. Christine took us through the steps to identify what "WE" need as individuals, to set priorities, and to communicate to others in a practical way, what we can and cannot do.  By managing expectations, and offering other suggestions, we can still be involved with our friends and family, but we can also be realistic about how and when we can help others. She said that saying "NO" to others is also saying "YES" to yourself! Think of the people we all know who have no trouble saying "no". Most of them have no guilt, so why should we?!  Taking charge of your own life instead of letting others dictate to you will give you back control of your own life and better manage your own energy. Christine Clifton speaks at many other support groups to share her ideas and also teaches a creative form of exercise and dance called NIA. Check out her website at www.BreakOutOfTheOrdinary.com.

 

Come Celebrate

Each year the December meeting is a time to celebrate and share together.   A pot luck table allows those present the opportunity to share a snack and spend time in one-on-one with fellow members.  If you are up to it, please bring something for the sharing table – hors d’oeuvres, finger sandwiches, cookies, fruit, cheese…or whatever you desire.  If you cannot contribute, you are still encouraged to come.  Remember the date, December 21st 2-4 PM at the Ridgewood YWCA/YMCA.  Feel free to bring your spouse or friend.

 

Surviving the Holidays

A few coping tips

·   Prioritize – decide what is REALLY important to you.

·   Do a little at a time, whether it is shopping or cooking or spending time with others. 

·   Build rest time into each day.  Short rest periods can prevent a major crash.

·   If possible, shop online and save your energy for other things.

·   Prepared foods can save time and energy.  Gatherings are about the people – not the food.

·   It is okay to say “no” to an event if you are not up to it.

·   Keep things simple.

·   Avoid stress and negativity – They eat up energy and exacerbate symptoms.

·   Remember to laugh – It is energizing

 

 

 

In the News – ME/CFS


 

 ME/CFS - The Time to Change the Name is Now! afairname.org [info@afairname.org]

Thank you for being one of the original signers of the petition to change the name 'chronic fatigue syndrome' to ME/CFS. Two years ago the seed of name-change was planted and since then it's been quietly watered and fertilized behind the scenes. We've already seen some sprouts growing and now we're about to see that little seed begin to blossom.

If you haven't already read it, please check out the article "A New Year, New Name" in ProHealth's 11/12/08 ME/CFS HealthWatch newsletter. It will update you on the status of the ME/CFS Fair Name Campaign and our plans for the future. We're really excited about the January launch of a totally redesigned Web site, complete with a new look and a new logo. In fact, we'd like to give you a little preview picture of that new logo and site design.

In addition to the new Web site, we'll be engaged in an ongoing and concentrated outreach program to all facets of the ME/CFS community.

But we need your help to make it a success. You can make a difference by using ME/CFS yourself and spreading the word whenever you have an opportunity. If you're able and would like to do more, we have some additional jobs for which we need volunteers:

·                 Public Relations - Write press releases, generate publicity, work with the media.

·                 Outreach - Send letters, contact support groups, post on message boards and in chat rooms.

·                 Administration - Coordinate volunteers, help gather data, general administrative tasks.

If you would like to volunteer to help in any of these areas, please reply to this e-mail and tell us about any experience you have as well as what jobs you would most like to work on.

Many of the most prominent individuals in the ME/CFS community are already supporting the effort; they include: Dr. Lucinda Bateman, Dr. David Bell, Dr. Paul Cheney, Dr. Leonard Jason, Dr. Nancy Klimas, Dr. Anthony Komaroff, Dr. Charles Lapp, Dr. Daniel Peterson, Rik Carlson, Rich Carson, Dr. Kenny De Meirleir, John Herd, Eileen Holderman, Marc Iverson, Cort Johnson, Yvonne Keeny, Mike Munoz, Karen Lee Richards, Marly Silverman, Staci Stevens, Mona Taliaferro, Dorothy Wall, and Annette Whittemore.

You have an opportunity to help right a horrible wrong that has shattered so many lives. We all have the obligation to do our part, no matter how big or small. Changing the name is like getting good health care for ME/CFS; it takes active participation, teamwork, persistence, and faith. This is the chance that patients have waited for for over two decades. Now that it's here, it is time to help end the suffering and humiliation and get the name changed. As Nike's slogan says, "JUST DO IT."

Working together for change,

Rich Carson
Cort Johnson
Karen Lee Richards
FNC Coordinating Committee

  

In the News – FM

NOTE: To view the article with Web enhancements, go to:
http://www.medscape.com/viewarticle/583439


 

Fibromyalgia Associated With Functional Brain Abnormalities

Allison Gandey

Medscape Medical News 2008. © 2008 Medscape

November 12, 2008 — Researchers have uncovered evidence that fibromyalgia is linked to brain-perfusion abnormalities that relate to the disability of the disease. Results from the molecular imaging study appear in the November issue of the Journal of Nuclear Medicine.

Fibromyalgia may be related to a global dysfunction of cerebral pain-processing.

"Fibromyalgia may be related to a global dysfunction of cerebral pain processing," lead investigator Eric Guedj, MD, from the Service Central de Biophysique et de Médecine Nucléaire, in Marseille, France, said in a news release.

"This study demonstrates that these patients exhibit modifications of brain perfusion not found in healthy subjects and reinforces the idea that fibromyalgia is a real disorder," he noted.

The research team shows that brain abnormalities are independent of the patient's anxiety and depression status. Dr. Guedj told Medscape Neurology & Neurosurgery that he was not surprised by the findings and believes fibromyalgia is associated with a central substrate.

"Past imaging studies of patients with the syndrome, however, have shown above-normal cerebral blood flow in some areas of the brain and below-normal [blood flow] in other areas," Dr. Guedj noted.

In the current study, investigators looked at 20 women diagnosed with fibromyalgia and 10 healthy women. Subjects underwent single-photon-emission computed tomography (SPECT).

"After performing whole-brain scans on the participants," Dr. Guedj explained, "we used a statistical analysis to study the relationship between functional activity in even the smallest area of the brain and various parameters related to pain, disability, anxiety, and depression."

The researchers found that the Fibromyalgia Impact Questionnaire was positively correlated with bilateral parietal perfusion, including in the postcentral cortex.

Somatosensory Hyperperfusion Linked to Severity of Fibromyalgia

The researchers confirmed the presence of perfusion abnormalities in patients with fibromyalgia.

They showed that bilateral hyperperfusion of the parietal cortex and of the pre- and postcentral cortices are strongly correlated with the Fibromyalgia Impact Questionnaire score. Hypoperfusion of the left anterior temporal cortex was also strongly correlated in patients with disease.

This is reportedly the first time investigators have observed a relationship between somatosensory hyperperfusion and the clinical severity of fibromyalgia. "This reinforces the sensitization hypothesis," the researchers emphasize.

This reinforces the sensitization hypothesis.

"It's a first step," Dr. Guedj said during an interview. "We demonstrated significant abnormalities in comparison with healthy subjects. We now have to demonstrate that this functional pattern is specific to fibromyalgia in comparison with other painful diseases."

The researchers point to a number of limitations to their work. The study had a small sample and there was a large difference between the number of patients and the number of participants in the control group.

"The questionnaires chosen for our study are largely used in fibromyalgia," they write. "We should, however, discuss whether they are appropriate for such use. Also, the Tubingen Pain Behavior Scale was not evaluated by independent, masked investigators."

It has been suggested that the Fibromyalgia Impact Questionnaire is the most logical measure to evaluate functional status in clinical trials. Dr. Guedj and his team conclude that "these findings reinforce the concept of using brain-perfusion SPECT to objectively evaluate therapeutic results in controlled studies."

Bristol-Myers Squibb sponsored the color reproduction of the figures in the original paper. The researchers have disclosed no relevant financial relationships.

J Nucl Med. 2008;49:1798-1803. Abstract

 

Next Meeting

The next meeting will be Sunday December 21st from 2-4 PM at the Ridgewood YMCA.  It is our annual Holiday Celebration.

 

 This newsletter is intended for CFS & FM 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.njcfsa@larosas.net, Nancy Visocki at ngv.njcfsa@verizon.net, Judy Machacek at judymachacek@msn.com or leave a voice message at  the NJCFSA HelpLine  888-835-3677 during business hours.

 

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