Bergen
CFS Support Group NewsletterSept 2004
Vol. II, Issue #10
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
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
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
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
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
Advocacy
This
information is form http://chronicfatigue.about.com and www.CFIDS.org.
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
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.
The Bergen
County Chronic Fatigue Syndrome Support Group meets every third
Sunday from
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
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
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
You can reach our meeting coordinator, Anne Gilmartin, at annie.laurie2@verizon.net or call her at 201 384-8604.