February 2007

          Vol. IV, Issue #37

Ribbon          Bergen CFS-FM Support Group Newsletter

Meeting Report


February 18th - The meeting was an open sharing session.  Those in attendance had the opportunity to share their experiences with CFS/FM from diagnostics to present status.  Everyone’s experience is unique yet there is a common thread that brings us all together.  The consensus was that the most important aspect for them was being evaluated by a physician well versed in CFS/FM.  Given the location, Dr. Susan Levine in New York was a key in the diagnostics of many of the members. 


Each member also shared coping techniques.  While most are on some prescribed medication, complementary/alternative therapies also play a big part in CFS management for our members.  Relaxation techniques, yoga, Tai Chi Chih, and meditation are among the therapies used by group members.


We had planned to show a video of the current CFIDS/CDC Awareness campaign, but had to postpone that segment due to technical difficulties and lack of time.


NJCFSA Spring Conference


New Jersey Chronic Fatigue Syndrome Association and

CFIDS Association of America


NJCFSA Spring Conference & CAA’s “kNOw MORE CFS” Seminar

Robert Wood Johnson University Hospital

New Brunswick, New Jersey

March 10, 2007    11am-5:15pm


Kimberly McCleary, President/CEO CFIDS Association of America - CFS National Public Awareness Campaign; overview, video clips of media coverage, and presentations from Jacqueline Niederle, Brian Bernard and other advocates spotlighted in the traveling photo exhibit, “The Faces of CFS.”

Nancy Klimas, MD – “Recent CFS Research Advances”

Alan Porcinki, MD – “Treatment of CFS”

The Traveling Photo Exhibit – The Faces of CFS

Conference includes: exhibits, light refreshments, Q&A panel

Register: www.cfids.org / (704) 364-0466 / CFIDS Association of America  kNOw MORE tickets P.O. Box 220398 Charlotte, North Carolina 28222-0398

Registration forms at: www.njcfsa.org and www.cfids.org.   Since it is close to the conference, it might be best to register at www.cfids.org with a credit card.


In The News


The following article was brought to our attention by one of our members. It is part of a list of “Bouquets and Brickbats”  We have included a few of the many responses from the community – near and far.  There is a link to submit your own response if you are so inclined.




BRICKBATS: To the U.S. Centers for Disease Control and Prevention, which recently paid $4.5 million of taxpayers' money on a public awareness campaign involving chronic fatigue syndrome.
Chronic fatigue syndrome is not contagious or life-threatening, and many experts question its merits as a focus for public health. Most researchers believe it's a real condition, but some feel the CDC has gone too far, at times putting such ailments ahead of the public good because advocates and politicians push for it.
The CDC was created to address serious, potentially fatal conditions such as cancer and heart disease. With due respect to anyone who suffers from it, chronic fatigue syndrome is just not that important.


Here are just a few of the responses.  You can read the entire list at http://www.zwire.com/site/news.cfm?newsid=17893313&brd=1698&pag=797&dept_id=21846&startrow=1&maxrows=10


Added: Saturday February 24, 2007 at 10:39 AM EST

So Sorry......I'm a Chronic Fatigue Syndrome Sufferer

I have had CFS or known as CFIDS or myalgic encephalomyelitis in other parts of the world for 19 years. I wouldn't wish this disease on anyone, not even someone as uninformed as you. I can truthfully say this disease has altered every faction of my life and my ability to be a marginally complete person. You are right, I am not dying from it; I just have to live with it and the ignorant opinions of those who are too lazy to do any research on its affects. The CDC is working to educate the public and medical community about this debilitating disease found all over the world, a disease as debilitation as MS, something you apparently don't know. My suggestion is to open your mind before you open your mouth and demonstrate to the public your level of ignorance. We are citizens and we have the rights of all other citizens to have the CDC research to find the cause and cure for us. Let me make this a bit easier for you ... there is a website that will help you become informed. Don't do this for us as we already have this knowledge. Do this for yourself!

B.B. Jensen Beach, Florida


Added: Wednesday February 28, 2007 at 09:58 AM EST

CFS- Brickbats

To say that CFS is "just not that important" simply shows your ignorance on the subject- so let me help enlighten you and your reading audience.

Statistics show that CFS will affect more women in this country than heart disease or breast cancer. The fact that is has been 'swept under the rug" and the women/people who suffer from it considered hysterical slackers because a cause is unknown is an outrage. You should be outraged that this still happens in today’s society. Of course, it wasn't so long ago that people with Epilepsy were considered to be "possessed by the Devil"!!

B.  Dallas, TX


Added: Tuesday February 27, 2007 at 11:31 AM EST

CDC _ ME/CFS Thoughts

Considering the high interest (feedback) regarding the opinion piece on CFS:
It may be an impetus to do a real journalism piece on this subject.
As one who has suffered the consequences of this illness for 13 years now, I am mostly past the anger phase.
I would just appreciate an educated, balanced follow up piece. You now have many sources and references to start the process.
Please email a follow up link to all of us who responded.

A.B. Pittsburgh,PA


In the News, Part 2


Another member shared information she found in a current publication.  We are sharing it with you but are not necessarily endorsing the source (as is true of any information in this newsletter).


Fibromyalgia and Social Security Disability

article syndicated from Allsup Inc.


February 2007

The Social Security Administration uses a process called sequential evaluation to determine who receives benefits. Here is the five-step process for a Fibromyalgia disability explained:

STEP ONE simply determines if an individual is "working (engaging in substantial gainful activity)," according to the SSA definition. Earning more than $810 a month as an employee is enough for disqualification from receiving Social Security disability benefits.  [One person who reviewed this article said, “This is obviously not true (or else I and many others would not be collecting disability!)“]                      

STEP TWO implies that the Fibromyalgia disability must be severe enough to significantly limit one’s ability to perform basic work activities needed to do most jobs; for example:

  • walking, standing, sitting, lifting, pushing, pulling, reaching, carrying or handling
  • seeing, hearing and speaking
  • understanding/carrying out and remembering simple instructions
  • use of judgment
  • responding appropriately to supervision, co-workers and usual work situations
  • dealing with changes in a routine work setting 
  • STEP THREE has no medical listing for Fibromyalgia. At this level of consideration the adjudicator is required to consider “equating” a medical listing. To establish Fibromyalgia as a medically determinable severe impairment there must be evidence of widespread pain present for at least three months. There must be pain present on palpation in at least 11 of the 18 tender point sites as identified by the American College of Rheumatology and the Centers for Disease Control. There must be evidence of morning stiffness and/or stiffness after sitting for a short period of time. Fatigue is to be present. To equate a medical listing the signs, symptoms and laboratory findings must be equivalent to an established listing. In most claims with a diagnosis of Fibromyalgia a finding of disabled is usually at Step 5, i.e., functional limitations so significantly erode the occupational base for sedentary work that a finding of disabled is warranted.                                                                                                                                             STEP FOUR explores the ability of an individual to perform work he has done in the past despite his Fibromyalgia disability. If SSA finds that a person can do his past work, benefits are denied. If the person cannot, then the process proceeds to the fifth and final step.                                        

    STEP FIVE looks at age, education, work experience and physical/mental condition to determine what other work, if any, the person can perform. To determine Fibromyalgia disability, SSA enlists vocational rules, which vary according to age.                                                                  For example, if a person is:                                                                                                            Under age 50 and, as a result of the symptoms of Fibromyalgia, unable to perform what SSA calls sedentary work, then SSA will reach a determination of disabled. Sedentary work requires the ability to lift a maximum of 10 pounds at a time, sit six hours and occasionally walk and stand two hours per eight-hour day.                                                                                                   Age 50 or older and, due to his Fibromyalgia disability, limited to performing sedentary work but has no work-related skills that allow him to do so, SSA will reach a determination of disabled.                                                                                                                                           Over age 60 and, due to his Fibromyalgia disability, unable to perform any of the jobs he performed in the last 15 years, SSA will likely reach a determination of disabled.                        Any age and, because of Fibromyalgia, has a psychological impairment that prevents even simple, unskilled work, SSA will reach a determination of Fibromyalgia disabled.

    Problems To Overcome In Receiving Social Security Disability Benefits

    More than one million people will file for benefits from the Social Security Administration this year. The bad news is, 60% who apply for benefits will be denied. The good news is help is available to improve your odds of getting benefits, should you or a loved one become disabled.

    All working Americans contribute 7.65 percent from every paycheck to FICA tax. Some of that payment goes toward disability insurance coverage by the Social Security Administration. However, bureaucratic problems plaguing SSA’s Disability Insurance program prevent fair and speedy distribution of benefits to people who are eligible.

    These are some of the problems you’ll face if you choose to apply by yourself:

    ·         A backlog of more than a million unprocessed disability claims;

    ·         An average five-month wait after filing a claim before receiving an answer on the initial claim, and almost a year of additional delays if the claim is appealed;

    ·         A backlog of 1.5 million disability cases now awaiting review, with another half million cases coming up for review each year.


    Next Meeting

    The next meeting is scheduled for Sunday March 18th   at Pascack Valley Hospital from 2-4 PM.  In addition to open discussion, we also plan to show the Documentary, I Remember Me, by Kim Snyder.  This video chronicles several CFS patients including Olympian Michelle Akers and film director, Blake Edwards.  The authorities seen in the film include Dr. David Bell, Dr, Nancy Klimas, and Dr. William Reeves.  We hope you will attend.  You are welcome to bring snacks if you like to munch while watching the film.

    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