November 2004

 Vol. II, Issue #12

CFS Blue Ribbon          Bergen CFS Support Group Newsletter

 

Meeting Report

 

The November meeting found us with another full house.  The featured speaker was Thomas Findlay, MD, Ph.D. – a physiatrist with extensive training in both traditional and alternative approaches to pain management and rehabilitation.  Dr. Findlay is trained in acupuncture and homeopathy.  He was the Research Director of the Rolf Institute and the Director of Research at Kessler Institute in East Orange, NJ.  The doctor used this combined medical approach with Christopher Reeve to allow him to breathe without a respirator for 45 minute intervals.  Dr. Findlay continues to develop new research at UMDNJ and the East Orange VA and to lecture on methods to improve the conditions of stroke victims, Gulf War veterans, and CFS patients.

 

He is involved in NIH research at the Veterans Hospital in East Orange.  One current study is evaluating balance in people with CFS, veterans, and healthy participants.  Dr. Findlay proposed that CFS is an overdrive of the nervous system which quickly “runs out of gas” – resulting in a fatigued state.  He further theorized that fatigue is caused by the brain concentrating on physical balance and that relief might be achieved through a rehabilitation program.  Dr. Findlay expressed concern that many physical therapists are trained primarily to care for athletes and post-surgical patients.  He suggested patients find therapists who are versed in the care of CFS.  Dr. Findlay shared that some patients might  find that a cardiac rehabilitation program would be appropriate since it starts slow and increases according to tolerance.  He cautioned that deep massage may not be helpful in FM patients and may cause more pain.  The balance study is in the early phases and new participants are still being sought.  If you are interested, please contact Judy at oceanvenus@earthlink.net for further instructions.

 

Dr. Findlay currently has offices in Hackensack and Livingston, NJ as well as New York.  Using 30 years of clinical experience, he customizes therapy using a combination of structural integration (Rolfing), physical therapy, heat, sound wave therapy, and massage therapy to treat pain.  His treatments have been shown to improve range of motion, stamina, and balance.

 

Points to Ponder                                                                                            
This might be one of the best kept secrets around.  This editor has not personally used the site.  If you have any experience with it, our readers might appreciate some input.  Comments can be sent to pat@larosas.net or BergenCFS-FMmtg@yahoogroups.com                                                                                       

FROM: http://www.nj211.org

The United Ways of New Jersey and the NJ Association of Information and Referral Services

The mission of the New Jersey 2-1-1 Partnership is to provide New Jersey residents with a single, easy-to-use system to obtain information on health, human and community services, volunteer opportunities and giving.

 

When implemented in New Jersey, 2-1-1 will be an easy-to-remember and universally recognizable telephone number that makes a critical connection between individuals and families in need and the appropriate community-based organizations and government agencies. 

 On October 3, 2002 the New Jersey Board of Public Utilities approved the use of 2-1-1 dialing for community information and referral purposes and recognized the NJ 2-1-1 Partnership as the sole administrator of 2-1-1 in New Jersey.  To read

 Counties with currently active 2-1-1 Call Centers include:

Bergen     Burlington     Camden     Essex     Gloucester     Hudson

Hunterdon     Mercer     Middlesex     Morris     Passaic     Sussex           

 

CFS Awareness Day                                                                               
May 12, 2005
is annual CFS Awareness Day.  It is also International ME/CFS Awareness Day.  There is currently a campaign underway to increase awareness through letter writing.  We are currently looking into the project and will bring you more information in the near future. 

Literature Review     

Happy Holidays to all who celebrate this month.

Just for fun this month – It is important to remember to laugh!  J                              From: http://www.cfs-news.org/game.htm#SYMPTOM

Welcome to "LIVING HELL!"   The Board Game for the Whole Family!

LIVING HELL is an exciting game of many mysteries and challenges that are virtually unbelievable! Once you've begun playing, you'll be seized with a sense of wonder as to how you may ever get out!

As fantastic as this game may seem, it is actually based medical facts that have been observed, although not yet confirmed, by a battery of double-blind placebo controlled trials that will be published in a peer-reviewed journal in about five, ten, or fifteen years -- if they are accepted after their final review.                                                                                                                     If you are reading this only for the humor, then jump down to the Description of the Squares RULES:                                                                                                                                            A player's piece moves from square to square on the board. For each square there is a stack of cards, each with a letter designation. Roll the dice, and their sum determines the letter of the card that you must choose. Follow the instructions on the card. The game is arranged so that the square that is visited most often will be Symptom Hell, and it is difficult to reach the Land of Remission or the Land of the Living.        

Lay-out of the Board:

 |   ENTRY    |       ___________        _____________
 |Always Tired|      |DOCTOR HELL|------|BENEFITS HELL|
 --------------\      -----------        -------------
                \    /      \          /         \
                    /        \        /            \
       ____________/__      __\___________      ____\__________
       |ADVOCACY HELL|------|SYMPTOM HELL|------|PERSONAL HELL|
       ---------------      --------------      ---------------
                \               /        \        /
                 \             /          \      /
             _____\___________/_           \____/____       \
             |LAND OF REMISSION|-----------|JOB HELL|        \
             -------------------           ----------         \
                                                               \
                                                         _______\_____
                                                         |   EXIT    |
                                                         |Land of the|
                                                         |   Living  |
                                                         -------------

When it is your turn, you go to your next step in accordance with the various possible rolls of the dice as follows:

 7, 11 or doubles -                 alternative A
 
 3, 5 or 9 -                        alternative B
 
 Other combinations higher than 7 - alternative C
 
 Other combinations lower than 7 -  alternative D

Start at ENTRY: Always Tired. Roll the dice and, in accordance with the scheme above, go to one of:

[ A ]    Symptom Hell

[ B ]    Doctor Hell

[ C ]    Job Hell

[ D ]    Personal Hell


Description of the Squares

(See the rules above)

 
     Symptom Hell      Doctor Hell    Personal Hell
 
       Job Hell       Benefits Hell   Advocacy Hell

DOCTOR HELL : A B C D  

[ A ] Your diagnosis: 'probably' depression. Prescription is 90 days of Prozac, psychotherapy, and heavy work-outs at a health club. You can choose: follow the prescription and go to Symptom Hell; OR remain here in Doctor Hell.

[ B ] Your doc admits he's baffled, but refuses to refer you elsewhere. He just feels like keeping you as "his" patient. Lose one turn.

[ C ] A doc you're considering says he "knows all about" CFS, but he insists on making love to your spouse. Your choices: acquiesce and go to Personal Hell, OR remain in Doctor Hell.

[ D ] You've found a doc who is actually familiar with CFS and you follow his treatments. Roll the dice again. If you get 7 or 11, jump to the Land of Remission; OTHERWISE, go to any square other than the Land of Remission (Symptom Hell, Benefits Hell, Advocacy Hell, Job Hell, or Personal Hell).

 

SYMPTOM HELL : A B C D

[ A ] You explore the wonders of Migraine. Lose a turn, and then choose any square as your next step except "Land of Remission" (Symptom Hell, Doctor Hell, Benefits Hell, Advocacy Hell, Job Hell, or Personal Hell).

[ B ] You wake up and it's next week. Lose a turn.

[ C ] Brain fog sets in. Choose any square as your next step except "Land of Remission" (Symptom Hell, Doctor Hell, Benefits Hell, Advocacy Hell, Job Hell, or Personal Hell).

[ D ] Pain surges forward. Go to Doctor Hell.

BENEFITS HELL : A B C D

[ A ] You had switched to part time work in order save your job for when you "get better". But now you're sicker and you may be fired. And now you find out that since you are now a part time employee, you no longer qualify for a disability benefit that you can live on. Go to Personal Hell).

[ B ] You ask your doc to support your disability application, but he refuses, explaining that "the CFS diagnosis I had given you was for *you*, NOT for the benefits office". (?) Your choices: go to Symptom Hell Symptom Hell or to Doctor Hell.

[ C ] Your disability application is turned down again. Lose a turn.

[ D ] Your disability forms have been in process for so long that you ask the staff at the benefits office to sign an affidavit in support of the application you've sent to the United Nations that you be accorded refugee status. The benefits office people do not see the humor. You may roll the dice again.

JOB HELL : A B C D

[ A ] Your boss needs a medical note from you to explain your lateness and productivity problems, but your doc says that your "depression" should have been cured by now, so no medical note. Go to Doctor Hell.

[ B ] You see your boss privately and explain that your illness requires you to avoid stress. Your boss explains that this job IS stress, and promptly doubles your assignments. Go to Symptom Hell.

[ C ] Your boss won't write in support of your disability application unless you have a medical note, but your doctor won't consider writing a medical note unless he sees documentation of work problems from your boss. Catch-22. Lose a turn.

[ D ] Your health falls to pieces and you're threatened with losing your job. Go to Benefits Hell.

PERSONAL HELL : A B C D

[ A ] Your lover reads somewhere that CFS is contagious, and becomes distant. Lose a turn.

[ B ] You meet a very interesting person of the attractive sex who pointedly asks you what you do for a living. You very slowly contemplate that inquiry as though it were a Great Philosophical Question. Then after a while you notice that their ride has come and whisked them away. Lose a turn.

[ C ] At a holiday gathering, your uncle seems to ask very sincerely about your health condition. You give a detailed answer and then he asks, as though you hadn't said anything, "So -- have you found a job yet?" Lose a turn.

[ D ] Your mom insists that since you're "not doing much anyway", you should do all the shopping and cooking for the whole family every day from now on. Stress reaction. Go to Symptom Hell.

ADVOCACY HELL : A B C D

[ A ] You call in to your local newspaper's health editor to request that they run an article about CFS. You get a return call from their secretary who says she was instructed to tell you that if you're looking for information, you should obtain the government "CFS Facts" booklet from "the CDC -- they know all about it". Choose any square as your next step except "Land of Remission" (Symptom Hell, Doctor Hell, Benefits Hell, Advocacy Hell, Job Hell, or Personal Hell).

[ B ] You write 28 letters for the May 12 campaign and feel very proud. But then you relapse. Go to Symptom Hell Symptom Hell.

[ C ] For the upcoming public meeting of the government committee that is responsible for CFS issues, you prepare your own statement of recommendations that you will present to the committee. At the committee meeting, just before your turn comes up the CDC's Dr. William Reeves prattles on for 10 long minutes about how the *public* is a fault for not understanding the alleged 'fine accomplishments' of the CDC on CFS issues. Although you are usually a calm person, you become filled with "CFIDS rage" and shout down Dr. Reeves, demanding to know how his years of avoiding public interaction and accountability can square with the his claim that it is the public who is at fault. Before Reeves might respond, the committee's chairman (who is the U.S. Secretary for Health) gavels you out of order and moves on with the meeting. Lose a turn.

[ D ] You plead with a wide variety of government health officials to change the name of the disease, and specifically to at least drop the "F" word (fatigue) from the current name. You explain that the word "fatigue", coupled with misimpressions about an alleged psychiatric origin of the illness by doctors, employers and the general public, makes life doubly and unnecessarily troublesome for those who have this severe and misunderstood illness. The officials reply that "fatigue" is a well known medical term which everyone understands, and so there's no need to change the name. Lose a turn.

LAND OF REMISSION : A B C D

[ A ] After feeling "good" for two weeks, you decide you're all better. You get accepted for a good job in your field, you sign up for two college courses, and you buy a condo. On your 2nd day at your new job, you have a major relapse. Lose a turn, and then go to Job Hell.

[ B ] You do better for a time, but then you suspect your mind might be getting foggy. One morning while in the shower, you kind of 'awaken' and realize that you've been washing the same body parts for the 3rd time. (A confirming clue.) Go to Doctor Hell.

[ C ] Following an irresistible impulse, you dress up (or down, as the case might be) and to go to the Metallica Reunion rock concert. You chug a case of beer and dance in the aisles for hours, right by the giant guitar amplifiers. Surprise: major relapse. Go to Symptom Hell.

[ D ] You go to a mountain retreat and read the books by William Collinge and Kat Duff, study David Carradine's Tai Chi video, and practice meditation. You re-align your personality and find yourself at one with the world. Your remission is complete, and you EXIT to the Land of the Living.

THE LAND OF THE LIVING

You call up your old boss and say "I've reached down and I've gotten a grip. I'm ready once again to shuffle papers with the best of them. Please hand me that LTL005 form, and heck -- I'll generate a productivity record that you'll *really* be able to memo the Quality Task Force about!"

 

Issues  

Some of you might be aware of the new FOX show “House”.   In the premier episode, there is an interaction between the doctor and a patient which has been viewed by many as a snub of CFS patients.  If you saw that show and would like to comment, there is a Grassroots Action on the www.CFIDS.org site (click on the capitol building) in the left column).  If you haven’t seen the episode but would like to comment on the need for education and sensitivity, you are also encouraged to do so.   Letters can also be sent to Fox via the USPS.

 Follow-up

Several people have asked about Chair Yoga and Tai Chi Chih classes.  Both are offered  by Valley Hospital at the Luchow Pavillion off Ridgewood Avenue in Paramus.   Pascack Valley Hospital also has some offerings and will consider “Chair Exercise” similar to the demonstration at last months meeting – if there is sufficient interest.  If you are interested in chair exercise classes, please contact Judy at oceanvenus@earthlink.net.

 

Next Meeting

 

The next scheduled meeting is December 19th from 2-4 PM at Pascack Valley Hospital.   This will be our annual holiday party.  Attendees are welcome to bring some type of snack or dessert.  As always you are welcome to bring a spouse or friend.  In an earlier mailing Anne requested that you let her know what you are bringing – if possible.  As always, you are also welcome even if you cannot bring anything. Our focus will be on enjoying the holidays. Perhaps you will learn some coping techniques on holiday survival or have some to share with others. 

 

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.