Sept 2004

 Vol. II, Issue #10

CFS Blue Ribbon          Bergen CFS Support Group Newsletter

Meeting Notice

 

We hope you had a pleasant and healthy summer.  Our first meeting of the season was held on Sunday September 19th.  It featured the portion of the video from the Spring NJCFSA Conference in which Suzanne Vernon, PhD of the CDC discussed how genetic aberrations in the blood of CFS patients are leading to new directions in the testing and treatment of this debilitating disease.  During the remainder of the meeting, those in attendance discussed concerns and current research issues.

 

Nancy Visocki reported that the research group at the VA Hospital in East Orange continues to do studies for the NIH (National Institutes of Health). These include CFS studies and Flu Shot Panel discussions.  As CFS patients, our input is very valuable to the studies.  Your participation could help people with unexplained fatigue, pain, and other symptoms.   If you are interested in being involved or would like more information, please contact Hannah Reade (Coordinator of Research) at 800-248-8005 Ext. 2715 or 973-676-1000 Ext. 2715.

 

Anne sends thanks to all who responded to her question about the UPSP mailed copies of the newsletter.  We also thank those who responded to our queries regarding the online newsletter.  Hopefully we will have that problem solved in the near future.  If you have missed any of the newsletters and are interested in reading the back issues, you will find them at www.njcfsa.org.  In the left column, click on “BergenNwsltr”.  Issues run consecutively – in reverse order – from the latest back to February 2004 when our postings began.  They do not have the graphics but the material is intact.

 

Schedule Corrections: Some meeting dates were accidentally misprinted in the schedules you were recently sent.  The correct dates are October 17th, November 21st and December 19th (all Sundays). A corrected version of the schedule appears at the end of this newsletter.  Thanks to those who noticed the errors and let us know.

 

 

Points to Ponder  

In Praise of CFIDS Turtle Or Do Turtles have CFIDS?

While the world whirls by - hurry, worry and waste;
the turtle moves at a slow, steady pace.

And though it might take time--you see,
to travel the distance from point A to point B.
The slow motion it makes towards its objective;
is perfectly permissible from a turtle's perspective.

So PWC's take heart and take heed;
though the turtle's not known for notorious speed.
It still gets where it's going, and going it "gits"--
and if things get too tough, it "tucks in" and sits.

So if you "Dance with the Serpent" and
the snake takes a bite;
Just behave "like the turtle", tuck in and sit tight.
Though it may take some time---week, day or hour;
You'll be back on your feet, if you use "turtle power"!

Anonymous
Reprinted from the CFIDS Chronicle, Spring 1992

Literature Review   

New Study Shows Promise that “Skin Tests” May Be Able to Provide a Definitive Diagnosis for Chronic Fatigue Syndrome

This report was compiled from information reported on medilexicon and the International Journal of Psychophysiology (Volume 53, Issue 3, August 2004, Pages 171-182; Hannah Pazderka-Robinson, James W. Morrison and Pierre Flor-Henry).

A new study provides the hope of finding a way to distinguish between what is often the subject of confusion and diagnosis: the devastating "chronic fatigue" that accompanies the baffling and disabling disease called Chronic Fatigue Syndrome and the "chronic fatigue" associated with depression.

Using tone and light stimuli, a University of Alberta study has shown that Chronic Fatigue Syndrome can be distinguished from the chronic fatigue associated with major depression by recordings of skin temperatures and electrodermal activity. In the past, numerous psychological investigations have attempted to differentiate those with the fatigue of Chronic Fatigue Syndrome and those with the fatigue associated with depression. The University of Alberta study (conducted with researchers from the University Centre for Neuroscience at the University of Alberta and from Alberta Hospital) was the first of its kind to use skin tests involving electrodermal activity; in this case, electrodes were placed on each hand to measure the differences among those diagnosed with Chronic Fatigue Syndrome, depression patients who experience chronic fatigue, and healthy controls.

These tests determined the profile of Chronic Fatigue Syndrome patients is clearly different from normal controls, offering hope of eventually being able to pinpoint the clear biological basis to the condition.

Chronic Fatigue Syndrome (CFS) is a disorder, characterized by an often debilitating host of symptoms that includes muscle weakness, myalgias, post-external malaise, and sleep and cognitive disturbances plus fever, sore throat, and headache. "The level of disability varies for people with CFS, but some individuals find they are unable to return to work or function normally on a day-to-day basis. Unfortunately, many of these symptoms are subjective in nature and are difficult to quantify or confirm," says Hannah Pazderka-Robinson, the lead author on the study and quoted in this article on medilexicon. "Not only does the stigma attached with the disorder play an emotional toll on the patient, but it has implications for insurance claims as well.

"There are a number of medical professionals who don't believe that CFS exists in the first place," said Pazderka-Robinson. "The problem is, both CFS and depression are characterized by very similar profiles. Imagine a patient who approaches a doctor and tells him they feel depressed and tired all the time.   "Because there is no objective test for chronic fatigue [syndrome], such as a blood test, the condition can be difficult for a doctor to diagnose," said Pazderka-Robinson, who has just completed a PhD in neuroscience.

Unless a patient's complete medical and psychological profile is considered, there can be confusion between whether the proper diagnosis is Chronic Fatigue Syndrome or depression. This confusion is present because those diagnosed with depression also have some symptoms associated with Chronic Fatigue Syndrome. (In strictly layman's terms, the chronic fatigue of depression is sometimes compared to inertia, while the chronic fatigue associated with Chronic Fatigue Syndrome includes muscle weakness, cognitive skills disruptions, and varying degrees of depression triggered by being so tired. In other words, in depression, the fatigue results from being depressed; in Chronic Fatigue Syndrome, the depression occurs from being so tired.)

Pazderka-Robinson was further quoted as saying that because "depression shows a high co-morbidity with CFS, some CFS patients are often given antidepressants -- that don't work or work poorly, since they do not address the underlying condition. Again, when these medications don't work, physicians sometimes jump to the conclusion that there isn't really anything, physically, wrong. Obviously, both misdiagnosis and the tendency for doctors to treat these patients as if they're not really sick can be extremely distressing. It can also undermine the patient's trust in the doctor and make them less likely to seek treatment if the condition worsens."

This University of Alberta study has verified that there is physical evidence for those who suffer from Chronic Fatigue Syndrome (CFS), giving new weight to the often stigmatized and misdiagnosed disorder. Research just published in the International Journal of Psychophysiology (Volume 53, Issue 3, August 2004, Pages 171-182; Hannah Pazderka-Robinson, James W. Morrison and Pierre Flor-Henry) determined that, using independent criteria, CFS can be distinguished from depression.

The profile of CFS patients is clearly different from normal controls, suggesting there is a clear biological basis to the condition. The study shows people with Chronic Fatigue Syndrome have higher skin temperature than people with depression or those in a control group. In addition, the skin conductivity response (the skin's capacity to conduct an electric current) of those with Chronic Fatigue Syndrome is lower.

The most significant part of the research was that there is reason to believe it can provide independent verification for CFS sufferers that will show that these CFS patients are different than normal controls and they're not "just depressed," said Pazderka-Robinson.                                                                               

Research (from CFIDS newsletter 9/08/04)

Ampligen Trial Update

Results of the latest multi-center trial of Ampligen, an experimental treatment for CFIDS, will be announced at the Interscience Conference on Antimicrobial Agents and Chemotherapy (ICAAC) being held Oct. 30 - Nov. 2 in Washington, D.C. Ampligen has been tested in CFIDS since the late 1980s and has been the subject of some controversy over the years. The study to be reported at ICAAC is the largest to date and advocates for the drug and investors alike hope it will provide sufficient evidence of safety and effectiveness in treatment of CFIDS to warrant marketing approval from FDA. For more information about Ampligen, read a 1999 Q&A with Dr. David Strayer at http://www.cfids.org/archives/1999/1999-1-article08.asp, the manufacturer's medical director or visit Hemispherx's web site at www.hemispherx.net/content/ftp/clinical_trials_cfs.htm.

Advocacy 

This information is form http://chronicfatigue.about.com and www.CFIDS.org.

Grassroots Action Center Listserv

The e-mail alert service, formerly known as C-ACT, now has a name that better reflects the purpose of this advocacy group: the Grassroots Action Center Listserv (GAC listserv). This CFIDS Association's new Grassroots Action Center has generated almost 10,000 messages of support for increased Chronic Fatigue Syndrome research and awareness to senators, representatives, other members of the federal government, and members of the media.

An interactive tool on the Grassroots Action Center Web site provides search areas for your elected officials (by zip code), issues and legislature related to Chronic Fatigue Syndrome, and a guide to the media.

Anyone already receiving the C-ACT e-mail notifications will receive the new alerts. If you aren't yet on the list, you can sign up for e-mail notifications on the Grassroots Action Center Listserv page.

The Grassroots Action Center Listserv is the advocacy group for The CFIDS Association. 

Note: Chronic Fatigue Syndrome is also sometimes referred to as Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS).

Information on the Grassroots Action can be viewed at www.cfids.org.  The Grassroots link is on the left hand side of the opening screen.  The CFIDS site also contains a wealth of information about CFS and current studies.  On Monday 9/27, we received notice that CFS research funding has been severely reduced.  Please go to the website to read the whole report.  You may also send a note requesting that funding be reinstated.

Next Meeting

 

The next scheduled meeting is October 18th from 2-4 PM at Pascack Valley Hospital.   We are hoping to have someone discuss gentle exercises for stamina and energy (including chair exercises).

 

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.

Bergen County Chronic Fatigue Syndrome (CFS) Support Group Meeting Schedule

The Bergen County Chronic Fatigue Syndrome Support Group meets every third Sunday from 2-4pm from September through June (second Sun. in June).  Meetings are held at Pascack Valley Hospital, Old Hook Road, Westwood, NJ.  Everyone is welcome!

 

Bergen County Chronic Fatigue Syndrome Support Group

2004-2005 Meeting Schedule

September 19th       First meeting of the season!  We will be showing a video of Suzanne Vernon, PhD, from the CDC, discussing how genetic aberrations in the blood of CFS patients are leading to new directions in testing and treatment for this debilitating illness. 

October      17th        We expect to have a speaker from a local health care facility discussing gentle exercise tips for building stamina and energy.

Conference                           Chronic Fatigue Syndrome Conference, Sponsored by Monmouth Medical Center and the NJCFSA is on November 7th in Eatontown, NJ.  When it becomes available, literature for the conference will be distributed at our meeting.

November  21st        Dr. Thomas Findley, an MD - certified in Physical Medicine and Rehab.  He is a Physiatrist with extensive training in both traditional and alternative approaches to pain management, acupuncture and homeopathy.

December  19th        Along with our meeting we will have a holiday party!

2005

January      16th        Ken Andes, a licensed acupuncturist and herbalist, demonstrating Tai Chi exercises that can be done sitting down.                         

February    20th        We will have a video, followed by a meeting. 

March          20th        Possible speaker discussing meditation and hypnosis for pain management and relief.

Conference                           The Chronic Fatigue Syndrome Conference, sponsored by Robert Wood Johnson Hospital and the NJCFSA in New Brunswick, NJ.

                                    When it becomes available, literature for the conference will be distributed out at our meeting.

April            17th        We anticipate providing an update of the CFS Conference held in April. 

May             12th       CFS Awareness Day.  More info to follow.

May             15th        Meeting topic TBA. 

June            12th        Meeting topic TBA.  This is the final meeting of the season.  Have a great summer!

                                    Our next meeting will be on September 18th, 2005, UNLESS THERE IS A CURE!!!

 

You can reach our meeting coordinator, Anne Gilmartin, at annie.laurie2@verizon.net or call her at 201 384-8604.