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FMS Community Newsletter #26 Monday, August 12, 2002 Subscription update:
1832
subscribers and 26 new subscribers.
Welcome!
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Members of the FMS Community have generously contributed in order to keep the
site and newsletter running, but we still need your help.
Please help keep the FMS Community alive by making a contribution if you are
able; any amount will help. Please go to http://www.fmscommunity.org/contributions.htm
to see how you can pitch in.
AOL users: <a href="http://www.fmscommunity.org/contributions.htm">Read it
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Featured link: Article on Conquering Helplessness Chronic illness often produces
a sense of helplessness. This week's article at the website of the
CFIDS/Fibromyalgia Self-Help program describes what students in our self-help
course report they do in order to regain control.
This is the second part of the eight-part series "What Works for Managing CFIDS
and Fibromyalgia."
Check it out: http://www.cfidsselfhelp.org AOL users: <a href=”http://www.cfidsselfhelp.org”>Read
it here</a>
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This week's news:
1) Call for stories - new fibromyalgia book
2) Fourth annual Common Cause medical conference
3) HHS regulates privacy of medical records
4) "But You Look So Good!" - a campaign for awareness
5) The beauty of fibromyalgia
6) The Politics Of Pain
7) Creating a "new normal" in the face of chronic illness
8) Transitions experienced by women with fibromyalgia
9) Vitamin C Minimizes Response to Psychological Stress
10)Adult growth hormone deficiency in patients with fibromyalgia
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1) Call for stories - new fibromyalgia book
Mary Shomon, author of two health-related books, is working on a book about FMS
and CFIDS. She has issued a call for first-person stories from people with FMS
and CFIDS and is seeking stories about:
* the difficulty getting diagnosed -- why it was so difficult, what frustrations
they encountered
* solutions people have found that helped get a diagnosis
* how a person found a great practitioner
* conventional treatments that helped them -- or didn't
* alternative treatments -- everything from acupuncture, to guai, to
supplements, to reiki, to yoga -- that helped them -- or didn't
* mind-body issues
* what they wished they'd known when just embarking on this health journey
Authors will remain anonymous, unless they specifically request not to be.
Stories can be sent to msho-@thyroid-info.com with Fibromyalgia Story in the
subject line.
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2) Fourth annual Common Cause medical conference
Editor's note: Verify the dates when you register.
Time is growing short but there are still some spaces left for the Fourth Annual
Conference of The Common Cause Medical Research Foundation.
This conference will enable attendees to learn about chronic illness and its
roots in biological weapons development. It will explore how much is truly
unknown versus how much is IN FACT KNOWN and documented but camouflaged by the
various agencies of power, profit and position. The speakers are dedicated
experts who have examined the research records and history of the developers of
germ weapons beginning in 1937 and continuing to the present. They will also
speak about their close relationships to the vaccine industry. But attendees
will also learn of success and hope!
The conference is August 23-23, 2002 at the Double Tree Hotel (1-800-627-5171)
in Windsor Locks, Connecticut (16 Ella Grasso Turnpike, Route 20) and
registration can be made by calling Joseph Foran at
860-875-8927). The registration fee is $90.00.
Check it out: http://www.NCF-NET.org AOL users: <a href="http://www.ncf-net.org">Read
it here</a>
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3) HHS regulates privacy of medical records
August 9, 2002
Health and Human Services Secretary Tommy G. Thompson has issued the first-ever
comprehensive federal regulation that gives patients sweeping protections over
the privacy of their medical records. The final regulation, which takes effect
April 14, 2003, will ensure strong privacy protections without interfering with
Americans' access to quality health care.
HHS received more than 11,000 public comments on the proposed modifications
issued in March 2002 and today is adopting final changes.
The final version, which will be published in the Aug. 14th Federal Register,
includes some key revisions to address public concerns.
Check it out: http://www.hhs.gov/ocr/hipaa/ AOL users: <a href="http://www.hhs.gov/ocr/hipaa/">Read
it here</a>
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4) "But You Look So Good!" - a campaign for awareness
September 23-29, 2002 is National Invisible Chronic Illness Awareness Week. The
theme is "But You Look So Good!" It is a major public awareness campaign
sponsored by Rest Ministries, an organization that offers a Christian support
environment for those who live with chronic illness or pain.
Outreach includes various events: the distribution of literature, "When a Friend
Has a Chronic Illness: What to Say, How to Help."
Resources include "But You Look So Good: A Guide to Understanding and
Encouraging People With Chronic, Debilitating Illness and Pain."
Churches across the U.S. will be participating by having various testimonies
shared about living with illness. Special chat guests will be online.
Contact: Ms. Lisa Copen, founder & director of Rest Ministries
858-486-4685 • toll-free 888-751-REST (7378) email: re-@restministries.org web
site: http://www.invisibleillness.com AOL users: <a href="http://www.invisibleillness.com">Read
it here</a>
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5) The beauty of fibromyalgia
Amanda Mitteer became the second runner-up in the Miss Vermont pageant recently.
Her platform was fibromyalgia, and her mother has FMS.
Check it out: http://www.ourfm-cfidsworld.org/html/amanda_mitteer.html AOL
users: <a href="http://www.ourfm-cfidsworld.org/html/amanda_mitteer.html">Read
it here</a>
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6) The Politics Of Pain
Anyone who lives with chronic pain is acutely aware of many physicians'
difficulty in coming to terms with prescribing adequate pain medication.
For us, this is more than a research or academic issue. We know firsthand that
pain is debilitating and can erode our standard of living and ability to earn an
income. Inadequately treated chronic pain patients have difficulty functioning
and poor attendance records at work. Indeed, the cost of chronic pain in the US
is estimated at $40 billion annually.
Yet,
50 million Americans with chronic pain are likely to be undertreated.
Check it out:
http://www.ourfm-cfidsworld.org/html/the_politics_of_pain.html AOL users: <a ef="http://www.ourfm-cfidsworld.org/html/the_politics_of_pain.html">Read
it here</a>
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7) Creating a "new normal" in the face of chronic illness
Inside every sick person is a well person wondering what the hell happened.
Chronic illness is a life experience like no other. It leaves no aspect of our
lives untouched, creating uncertainty, self-doubt, losses and limitations,
adjustment issues, and a lot of hard work. Illness changes the way we see
ourselves and alters our perceptions of the world around us.
Learning to adapt and to live differently is perhaps the greatest challenge we
will ever face.
We mourn the loss of life as it was and ultimately learn to create a "new
normal." Although at times we feel defenseless against forces we cannot control,
we find options for creating meaningful lives despite significant obstacles.
Check it out: http://www.livingwithillness.com AOL users:<a href="http://www.livingwithillness.com">Read
it here</a>
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8) Transitions experienced by women with fibromyalgia
Soderberg S, Lundman B.
Department of Health Sciences, Lulea University of Technology, Sweden.
Siv.Sod-@hv.luth.se
Fibromyalgia (FM) is a chronic pain syndrome the hallmarks of which are a
chronic diffuse musculoskeletal pain, tender points, and fatigue. The majority
of those who have FM are middle-aged women. The aim of this study was to
illuminate the transitions experienced by women with FM.
Twenty-five women with FM were interviewed about living with FM. The interviews
were analyzed using thematic content analysis. The analysis revealed five
categories; transitions in patterns of daily life, family life, social life, and
working life, and learning to live with the changes brought about by FM. The
categories were subsumed into one theme: FM as the choreographer of activity and
relationships. The transitions experienced were illuminated in a core story. The
experience of transitions is apparently something that is invisible to almost
everyone except the women themselves. Paradoxically, the women described
transitions in life due to the illness, but they felt that other people saw them
as healthy. It is like living in two worlds simultaneously, the world of the
sick and the world of the healthy.
PMID: 12141840 [PubMed - indexed for MEDLINE]
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9) Vitamin C Minimizes Response to Psychological Stress
(Reuters Health) Jul 22 - Vitamin C supplements may provide beneficial effects
for people under stress, according to the results of a new study. The findings
indicate that individuals with high blood levels of ascorbic acid exhibit fewer
physical and mental signs of stress when subjected to acute psychological
stressors than do subjects with lower levels of vitamin C. The study, published
in a recent issue of Psychopharmacology, showed that objective and subjective
stress indicators were consistently lower in people with high levels of vitamin
C. Recovery from a stressful situation was also faster.
Check it out: http://www.medscape.com/viewarticle/439084?mpid=1801 AOL users: <a
href="http://www.medscape.com/viewarticle/439084?mpid=1801">Read it here</a>
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10) Adult growth hormone deficiency in patients with fibromyalgia
Curr Rheumatol Rep 2002 Aug;4(4):306-12 Source: Medline Bennett RM.
Oregon Health & Science University, Department of Medicine (OP09), Portland, OR
97201, USA. benne-@attbi.com
Adult growth hormone (GH) deficiency is a well-described clinical syndrome with
many features reminiscent of fibromyalgia. There is evidence that GH deficiency
as defined in terms of a low insulin-like growth factor-1 (IGF-1) level occurs
in approximately 30% of patients with fibromyalgia and is probably the cause of
some morbidity. It seems most likely that impaired GH secretion in fibromyalgia
is related to a physiologic dysregulation of the hypothalamic-pituitary-adrenal
axis (HPA) with a resulting increase in hypothalamic somatostatin tone. It is
postulated that impaired GH secretion is secondary to chronic physical and
psychological stressors. It appears that impaired GH secretion is more common
than clinically significant GH deficiency with low IGF-1 levels. The severe GH
deficiency that occurs in a subset of patients with fibromyalgia is of clinical
relevance because it is a treatable disorder with demonstrated benefits to
patients.
PMID: 12126582 [PubMed - in process]
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