For Your Information
CFS/FMS
News September-October 2003
Chronic Fatigue and
Fibromyalgia Support Group
- of
South West Florida WWW.CFS-FMS-FL.ORG
-
Meeting
Third Saturday of the month, 10:30AM to Noon at
the Cape Coral Hospital,
- In the ‘New
Café’, 636 Del Prado Boulevard, Cape Coral.
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September –
Round table discussion
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October - Round
table discussion.
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- Handouts on Chronic
Fatigue and Fibromyalgia are available at every meeting. A therapist
leads round table discussion. Information and support is shared by
all. Perfume and scent free due to sensitivities. Programs announced
as available.
- Newsletters are
published every other month.
- If you received
this newsletter in the mail it means we do not have your e-mail
address.
-
Visit our very own web
site at www.CFS-FMS-FL.org
- Roxann Barber
-
- “As you leave
behind all that has been, you are on the way to all that can
be."
-Douglas Pagels
Local and Group News
-
Thanks to Ken & Connie
for submitting a news note about the movie “Seabiscuit”.
(See Reviews below) I need all the help I can get with news and
information for this newsletter!
- Love and Hope for All,
Roxy Barber webeinflorida@juno.com
-
4114 SE 18th Ave. Unit A,
Cape Coral, FL 33904, 541-3429
Chronic Fatigue and the Heart
- In Some Patients
With Chronic Fatigue Syndrome (CFS), Left Ventricular Function May
Be At The Heart Of The Matter, from: ChronicFatigueSupport.com,
07-14-2003
- Growing evidence
points to a possible problem with circulation. Previously reported
findings include autonomic dysfunction, lower plasma volume and/or
red call mass, as well as abnormalities in neurohormonal systems of
circulatory control. Other studies have found that CFS patients may
have reduced blood flow in exercising muscles.
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The main symptom of the
CFS patient (i.e., chronic fatigue that is greatly exacerbated by
even minor effort) is similar to that of a patient with left
ventricular dysfunction. A team of researchers thus hypothesized
that some patients with left ventricular dysfunction who do not show
overt signs of cardiac insufficiency may nevertheless develop
persistent, disabling fatigue and become diagnosed with CFS. To
explore this possibility, they conducted special tests on CFS
patients and healthy controls. Sixteen patients meeting case
definition for and 4 control subjects participated in the study. The
control subjects were sedentary individuals, gender and age-matched
to the CFS group. Studies were performed under 2 experimental
conditions: (1) maximal exercise; (2) an active postural change.
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This study provides a
preliminary indication of reduced cardiac function in some patients
with CFS. It raises the possibility that some CFS patients may have
cardiac disorders that are subtle enough to escape the current net
of clinical cardiological diagnoses, but may be significant enough
in some patients -- perhaps in conjunction with other factors -- to
lead to the clinical syndrome of CFS. The researchers note that
their findings may also be explained by abnormalities other than
those with the heart, including problems with the distribution of
cardiac output, reduced blood volume, and neurogenic and
endocrinologic abnormalities. Accordingly, further studies capable
of defining more precisely the causes of altered cardiac stress
responses are required.
Cytokine Abnormalities Official!
From The American
Fibromyalgia Syndrome Association UPDATE Volume 8, Issue 2 -
January 2002 - Cytokine Abnormalities Official!
- The July 2001 issue of
Rheumatology UCLA professor Daniel Wallace, M.D., and his coworkers
report showed that cytokine chemical abnormalities were substantial
and provided a basis for how FMS may progress over time. In
addition, the study lays the groundwork and justification for
investigating the use of two classes of novel pain relievers;
cytokine-altering drugs, one of which has just been approved by the
FDA for prescription sale.
- Cytokines are produced
by the immune system and can cause many, if not all, of the symptoms
of FMS, interacting with the body’s pain, hormonal and stress
response systems. . Wallace looked for cytokine abnormalities in FMS
patients; subdividing the FMS patients into “early stage”
(symptoms for less than two years) and “late stage”
(symptoms for greater than two years) in the hopes of explaining why
remission rarely occurs in late stage fibromyalgia.
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The study found that there
are significant changes in cytokine production even in the early
stage of FMS, but this production generally increases as the
duration of symptoms progresses. And the body’s ability to
counteract the cytokine activity becomes exhausted. Fortunately, a
drug that acts to counteract cytokine production has just been FDA
approved, with many more cytokine-altering drugs soon to be
released. There is hope that these abnormalities and the symptoms
that they produce can be minimized in the near future.
Becoming Involved
- Pain Care Coalition
-
APS, AAPM, and the
American Association for the Study of Headache formally organized
the Pain Care Coalition (PCC) in June 1998. The mission of the PCC
is to work to influence federal healthcare policy via legislative,
regulatory, and research avenues on behalf of people with pain by
addressing quality-of-care and access-to-care issues. The PCC has
taken active positions on a number of legislative and regulatory
activities:
- The Pain Care
Coalition endorses H.R. 1863, the Pain Care Policy Act of 2003. Dr.
Marc Hahn, of Fort Worth, TX, Chairman of Coalition, praised the
bill as a policy proposal the enactment of which "will help
make pain care research, education, and treatment priorities within
federally funded health care programs and facilities. The fact is,
pain is a malady that millions of Americans are forced to deal with
on a daily basis. This legislation will encourage a more
comprehensive focus within many components of our nation's health
care system to address pain and provide more opportunities for
patients to gain access to important pain care services that can
improve their lives."
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H.R. 1863 stands as the
first comprehensive, proactive pain care legislation that has been
introduced in Congress. The following is a summary of H.R. 1863:
Would establish a White House Conference on Pain Care for the
purpose of: 1) increasing public awareness of pain as a significant
health problem; 2) assessing the adequacy of pain care diagnosis and
treatment; and 3) identifying barriers to appropriate pain care.
Authorize a National Center for Pain and Palliative Care Research
within the National Institutes of Health. Establish a pain and
palliative care research and quality program within the Agency for
Health Care Quality & Research. Ensure that America's servicemen
and women and veterans receive appropriate pain care services.
Require health care providers within the military's TRICARE health
care system to provide appropriate pain care services. Patients
enrolled in Medicare managed care plans receive appropriate pain
care. Authorize a public awareness to better educate patients,
families, and other caregivers on the availability of appropriate
pain care.
- Support H.R. 1863, the
Pain Care Policy Act by sending your message
of support to your
US Representative. See
www.ampainsoc.org/advocacy/coalition.html
for links.
-
Weekly Washington Wire
on Health Care Issues, is an e-mail and web-published newsletter
providing a summary of the status of current legislative initiatives
in each issue. This newsletter reports highlights of important
federal developments in health law and public policy. Subscribe at
www.ppsv.com/wire
Book Reviews
-
Submitted by Ken &
Connie (sorry, I don’t have the last name written down and
can’t remember it!!)
- On TV the other night
they had a program about the movie “Seabiscuit” that is
coming out this Friday. (Aug 15) The Author is Laura Hillenbrand.
They interviewed her and talked a lot about her. It seemed that she
has CFS and had it the whole [4yrs] time she was writing the book.
Many days and weeks she couldn’t get out of bed. She had a
refrigerator moved in beside her bed so she didn’t have to
leave the room. It was a very courageous interview by her as she
told about this {her words} terrible condition she had..
- Ken encourages us all
to find more out about this lady and her struggle to write a book,
that is now a hit movie! The movie is showing currently in theatres
across the nation.
- Finding the Way
Home: A Compassionate Approach to Illness by Gayle Heiss,
QED Press
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In Gayle Heiss’s
book about illness, pain, loss, and death. health problems are put
in their proper context-as part of the human condition, not
aberrations visited upon an unfortunate few. Rather than detailing
medical conditions and their treatments, Finding The Way Home
defines the emotional and spiritual shifts that are part of coming
to terms, explores the complex interactions that the ill have with
their families, friends, health care providers and the world at
large, and gently allows love, understanding, and open communication
to point the way to a richer, more meaningful existence.
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Based on the author's
personal experiences and on the experiences of hundreds of people
who have attended her weekly support groups, Gayle Heiss is more
witness than expert, her humility is refreshing and her reflections
honest. Her "area of expertise" is a profound
understanding of individual differences and the ability to provide a
supportive context for fellow-sufferers. Excerpts from support group
discussions gives the reader the rare opportunity to hear ill people
talk honestly and openly with one another. Heiss has found that
every person in the circle of relationship is both the agent and the
recipient of healing.
Reading List/Web
Surfing
-
Check your local Library
for all kinds of reading; CFIDS, FMS, and related disorders,
spiritual, self-help, history, nutrition, yoga, art, and just plain
good reading. You name it, they got it. And if they don’t they
will get it for you on inter-library loan. some libraries give away
donated magazines, and some libraries offer a special book delivery
for people who cannot travel.
- BOOKS
-
Women Living with
Fibromyalgia by Mari Skelly, Kelley Blewster, Devin J Starlanyl
- Finding the Way
Home: A Compassionate Approach to Illness by Gayle Heiss,
QED Press
-
Dominoes: A Memoir
by Kathleen Kerry
- Parting the Fog:
The Personal Side of Fibromyalgia/Chronic Fatigue Syndrome by
Sue Jones
- The Fibromyalgia
Relief Handbook by Chet Cunningham
- Fibromyalgia for
Dummies by Roland Staud , Christine A. Adamec
- WEB SITES
-
American Pain Society,
www.ampainsoc.org
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Pain Care Coalition
http://www.ampainsoc.org/whatsnew/050903.htm
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Weekly Washington Wire on
Health Care Issues www.ppsv.com/wire
-
On-Line support group
http://fibrohugs.com
Disclaimer
-
The Chronic Fatigue and
Fibromyalgia Syndromes Support Group is a self-help program to
present ideas and exchanges with the members. None are to be
construed as medical advice. This newsletter does not dispense
medical advise not is any endorsement intended. No responsibility
will be assumed for any specific medical hypothesis or product, and
will assume no responsibility for any treatment or activity
undertaken by readers.
Contact
-
Bonnie Dewar
239/543-2812
-
Terry Connor
239/945-1247
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Yes! Please save us some
money and send me my newsletter by e-mail.
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Send a request to Roxy at
... webeinflorida@juno.com
- **********
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I wish to donate
the enclosed amount to help with the costs of the Cape Coral CFS/FMS
group. Any and all donations are appreciated.
$________________________________
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