June 2004

 Issue #9

  CFS Blue Ribbon        Bergen CFS Support Group Newsletter

June Meeting

 

Dr. Richard L. Bruno, Ph.D. addressed this audience of approximately 40 people on “Understanding & Treating Chronic Fatigue: The Polio Connection”.  For those in attendance, it was a wonderful and enlightening experience.  It is very obvious that Dr. Bruno recognizes humor as a vital part of managing adversity.  He has spent many years working with Post Polio Syndrome patients and also has extensive experience in the area of CFS.  His approach acknowledges that there are strong similarities between the Post Polio Syndrome and CFS/FM.  Patients need to manage their symptoms – no matter what the causes them.  He presented his Golden Rule.  “If anything causes fatigue or weakness or pain – DON’T DO IT” (or do much less).  He also addressed guilt as the “should” we adopt from those around us.  He added “If you are not guilty and anxious, you’re not taking care of yourself”.  We do things because we are expected to do them – even though we know they will make us feel sicker.  CFS patients need to tolerate the anxiety and guilt while making the adaptations needed to be healthy. 

 

Editor’s Note:  It is impossible to condense this dynamic two hour presentation into a few sentences.  You might like to read Dr. Bruno’s book The Polio Paradox: What You Need to Know.  It was published in 2002 by Warner Books and is available in both hardcover and paperback.

 

Points to Ponder  

This story has been making the email rounds.  It is a good philosophy for anyone with chronic disease to consider.

The 92-year-old, petite, well-poised and proud lady, who is fully dressed each morning by eight o'clock, with her hair fashionably coifed and makeup perfectly applied, even though she is legally blind, is moving to a nursing home today.  Her husband of 70 years recently passed away, making the move necessary.

After many hours of waiting patiently in the lobby of the nursing home, she smiled sweetly when told her room was ready. As she maneuvered her walker to the elevator, I provided a visual description of her tiny room, including the eyelet sheets that had been hung on her window.  "I love it," she stated with the enthusiasm of an eight-year-old having just been presented with  a new puppy.  "Mrs. Jones, you haven't seen the room... just wait."  "That doesn't have anything to do with it," she replied. Happiness is something you decide on ahead of time.  Whether I like my room or not doesn't depend on how the furniture is arranged... it's how I arrange my mind.  I already decided to love it.  It's a decision I make every morning when I wake up.  I have a choice; I can spend the day in bed recounting the difficulty I have with the parts of my body that no longer work, or get out of bed and be thankful for the ones that do.

Each day is a gift, and as long as my eyes open I'll focus on the new day and all the happy memories I've stored away... just for this time in my life.  Old age is like a bank account... you withdraw from what you've put in.   So, my advice to you would be to deposit a lot of happiness in the bank account of memories. Thank you for your part in filling my Memory bank. I am still depositing.  Remember the five simple rules  to be happy:
1. Free your heart from hatred.
2. Free your mind from worries.
3. Live simply.  
4. Give more.   
5. Expect less.

Literature Review                                                                                    

Since CFS fatigue has been compared to MS, this study may have merit for PWCs.

From: Advance for Nurses E-Newsletter (6-12-04)

Yoga Reduces Fatigue in Individuals with MS
Just 6 months of yoga significantly reduces fatigue in people with MS, but it has no effect on alertness and cognitive function, reports a new Oregon Health & Science University (OHSU) study.

The study, published June 8 in the journal Neurology, found that yoga is as good as a traditional aerobic exercise program in improving measures of fatigue, a common and potentially disabling symptom of MS. It was the first randomized, controlled trial of yoga in people with MS.

A parallel study by the same OHSU authors, presented in April at the 56th annual meeting of the American Academy of Neurology, found that cognitive function does not improve among healthy seniors in 6-month yoga program or exercise class, but physical health and quality of life appear to be enhanced.

The MS study was not designed to determine the impact of yoga on the disease itself, said the study's lead author, Barry Oken, MD, professor of neurology and behavioral neuroscience in the OHSU School of Medicine. Rather, it was intended to determine the effect of yoga and aerobic exercise on cognitive function, fatigue, mood and quality of life among people with MS.

Research 

The information regarding this research project was passed to us by group member Judy Machacek.  She has requested that anyone who might be interested in participating, please make the contact ASAP.  The researchers will soon be moving into the next phase of the project.

Attached please find a request from the CFS Research Group that is doing a study sponsored by the NIH for CFS and Gulf War, FM and other fatigue illnesses.   I was referred to this group by my Physical Therapy doctor, Dr. Findley who also represents the group that is working on the Balance and Tai Chi Study (which is just being funded at this time).  Please forward to  anyone and everyone so we can be represented, and so we can help our service men and women who will also be involved in this research.  I was a participant in this study last Monday -  Painless and interesting too.  The good part is you can sit for the entire time and most of the interview is clicking a mouse to respond to questions on the computer, while being monitored for pulse, heart rate, etc. The research staff is very nice and very professional. Our CFS money has probably funded this study, so I figure why not be a part of the project. The VA Hospital is
very easy to get to.  It is one right turn and one left turn, after exit 145 off the Parkway.  If you know anyone who can participate, please call Hannah.  Also, I would be willing to answer any questions by email or phone.  Call me at 201-836-7391.
Thanks to everyone.
Sincerely yours,
Judy Machacek
oceanvenus@earthlink.net

“Hello,

We are studying personality and cardiovascular reactivity as possible
factors in medically unexplained symptoms like fatigue.  If you meet eligibility criteria, you would be scheduled to come to the E. Orange VA Medical Center for the study.  You will be asked to complete some questionnaires asking about your health and personality etc. and also to complete 3 short stressor tasks 4-6 minutes each. Mental math for 4 minutes, a role-play confrontation for 4 minutes, and your hand in cold water for 2 minutes or as long as you can.  During these tasks we will have a blood pressure cuff on you and EKG sensors to measure BP and pulse.  We will also ask you to provide some saliva samples on a small cotton roll to measure hormones.  The visit will last about 2 hours and we pay $30.00 by mail.  Your participation could help people with unexplained fatigue, pain, and other symptoms in the future.  Please help us help people like yourselves.  Thanks.” 

Hannah (coordinator of research)
If interested call me at 973-676-1000 X2715 or 1800 248 8005   Thanks again very much.

Next Meeting

 

The group does not meet during July and August.  The next scheduled meeting September 19th  2-4 PM at Pascack Valley Hospital..  Have a safe and healthy summer.   

 

Please Note 

 

This summer we will be revising the mailing list for the paper edition of the newsletter.  We are happy to send a copy of the newsletter to those of you who do not have email, but in an effort to curtail expenses, we would appreciate knowing whether or not you wish to continue receiving it.  If you want to remain on the list, you must respond to Anne Gilmartin.  If you are receiving it in both email and paper please let us know so we can discontinue the paper version.  A tear off form has been added to the end of the newsletter for your convenience.

 

*The email list is not being revised at this time.  All email addresses will remain as they currently appear.  If you change your email address, please be sure to notify us.

 

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 annie.laurie2@verizon.net.

 

 

 

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