Selections from our EMAILS and NEWSLETTERS
January 2001
CSN Honors Three of Our Own
FDA Recalls Certain Injectable Medications
The
Irritable Heart - Gulf War Syndrome
A Tibetan Medicine Approach to CFS
CFSupport Email System Changes
AACFS Conference In Seattle Jan 2001
Oct 2000 State of the Science of CFS Conference Report
Role Of Orthostatic Intolerance In CFS
New SSA Increase SGA and TWP Earning Levels &
Increase SSI Student Earned Income Exclusion for 2001
Employment Law Referrals
Steroid Medication No Help To CFS Patients Who Get That Faint Feeling
Illness Experience Reflected In Poetry and Art
Nourishing Traditions Suggestions for CFS
Your Body's Many Cries For Water
Washington Post on "Zits" and FMMore Items In The News
Recent Books
Genetic Link To CFS
Dissolution
Of Montgomery County, MD, CFIDS Group
Introduction
Welcome to CFSupport Group News! To receive all of our emails and newsletters, please join our email list and Yahoo!
group at http://groups.yahoo.com/group/CFSupport
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As a member of our CFSupport Yahoo group, you would be able to browse
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CFS/M.E., fibromyalgia, and related illnesses. We keep the number of emails to less than one per day on average.
CSN Honors Three of Our Own
The CFIDS Support Network (CSN) of the CFIDS Association of America
has announced the CSN Action Awards for 2000, and three of our own are
among
them:
- Toni Marshall has won the Champion award for New
Support Group Leader.
- Attorney Mitch Lambros has won the Champion award in
the Other category.
- Dr. Alan G. Pocinki has won a Health Professional
Champion honorable mention.
All three have been champions for years to all of us who
know them and have
benefited from their wisdom, advice, leadership, and dedication to
persons with
CFS in our community. Congratulations to them, and to all of the other
award
winners throughout the country!
And thanks to Elly and other group members who wrote in letters
nominating our
three local favorites.
FDA Recalls Certain Injectable Medications
The FDA has issued a recall (dated January 25, 2001) for
injectable medications labeled as
having been manufactured or marketed by AMRAM, Inc. or Phyne
Pharamceuticals.
The list includes several types of medications commonly used by persons
with
CFS, such as Vitamin B-12 (Cyanocobolamin) and Hydroxocobalamin
(another form of
B-12). For complete information, see:
http://www.fda.gov/bbs/topics/NEWS/2001/NEW00750.html
The
Irritable Heart - Gulf War Syndrome
Sick of War
Reviewed by Edward Dolnick
The Washington Post - Book World - Sunday, January 28, 2001 ; Page T06
THE IRRITABLE HEART
The Medical Mystery Of the Gulf War
By Jeff Wheelwright
Norton. 352 pp. $26.95
Excerpt of Review: Wheelwright ... argues that Gulf War Syndrome is a
real illness with a strong family resemblance to chronic fatigue
syndrome, fibromyalgia and multiple chemical sensitivity. This may be
so, but the claim is perhaps
less bold than Wheelwright implies. Chronic fatigue and the others are
poorly understood and notoriously difficult to treat. To debate whether
Gulf
War Syndrome belongs in their murky family smacks of debating whether a
particular body of water is a bog or a swamp.
Patients with hard-to-diagnose illnesses are doubly afflicted. Their
disease torments them, of course; but, too often, baffled and impatient
doctors
make matters worse with their own hostile or dismissive attitudes.
Wheelwright is free of all such patient-blaming tendencies. Even so,
the veterans he interviewed resented his skeptical questioning.
"Something happened over there to me and my friends," one snapped, "and
if you don't want to
believe it, that's fine. You're just doing [the book] to get attention
and to
get money."
A Tibetan Medicine Approach to CFS
Elly was alerted to this "Ask Amchi" CFS Q&A appearing on the internet recently:
Dr. Trinley Wangchuck, Amchi, answers selected questions on herbs, health and Tibetan medicine from his
home in Kathmandu.
Tashi Delek! Greetings! Amchi is a Tibetan word similar to "doctor,"
and I have spent my life studying and practicing traditional Tibetan
medicine. I am also the chief formulating herbalist of Tibetan Formulas medicinal teas.
Q: I have chronic fatigue syndrome, and it affects every aspect of my
life. I
cannot hold a fulltime job because I am exhausted when I wake up in the
morning. I cannot exercise because my body aches afterwards, and I
cannot
maintain an active social life because I am too tired. I am a
33-year-old
man, and I used to be a nationally ranked long distance runner, a top
performer at my social service job, and I had a large circle of
friends. Is
there a cure in Tibetan Medicine? I would do anything to get my old
life back.
--Tired in Tacoma
A: I will talk about chronic fatigue syndrome (CFS) overall
and then come back to your specific case....
I have seen some chronic fatigue syndrome in Westerners over
the last eight years. The people are very similar psychologically: type
A personalities and high performers who push their mind and bodies to
the limit and are very hard on themselves.
The pulse in these cases feels similar to the pulse of someone
who has digested poison—very flighty, unstable, fast and then
slow, etc. Eight hundred years ago in Tibet a spiritually advanced monk
prophesied there would come a day when "ignorant men" would make
artificial substances that would poison the protector gods and deities
that watch over mankind. The gods would in turn "go crazy" and hurt,
rather than preserve, mankind's physical and mental health. Many
Tibetan monks believe this time has come.
What does this mean? In more mundane terms, men or women will
advance technologically to the point where they can create substances
not seen before in nature. Foolishly they will release them into the
environment without considering their long-term effects on humankind
and the mesh of animals, plants, and inorganic materials that support
life on this planet. The "ignorance" in this case does not mean lack of
intelligence. It means a lack of understanding of the interrelated
nature of things—a spiritual ignorance. The "protector gods" can
be considered the natural forces of the environment that have supported
life on the planet for eons.
How does this relate to chronic fatigue syndrome and to your case? Most
traditional Tibetan doctors, myself included, believe that CFS is
caused by an overload of toxins in the system, compounded by extreme
stress over a long period of time. This results in some type of
pathogens gaining a foothold in the body and disrupting its natural
equilibrium. It's like an avalanche: first one little, almost
imperceptible stone shifts, then another, then two, then ten, then a
hundred, then the whole slope comes tumbling down.
The good news is that, as human beings, we have a lot of
options to create our own "positive avalanches." Things can go up as
well as down.
CFS is very complex. Every step in its treatment needs to be
made under the care of a trained health professional. First off, the
patient needs to be detoxified of as many external and internal poisons
as possible. In Tibetan Medicine we describe it this way: "You cannot
dye a dirty sheet. First you need to wash the sheet, then dye it."
There are myriad ways to detoxify in Tibetan Medicine. We use herbs,
gentle exercise, steam baths, and massage. It is too complex to go into
specifics here, but I am confident you can find information on
detoxification there in the U.S. Remember, herbs alone are not enough.
You also need to do gentle exercise, including stretching, get at least
some massage, and enjoy a steam bath once a week. A trained health
professional should supervise your detoxification, as it is very
powerful and yet subtle. Detoxification is the first step. Do not go
through the detoxification process for too long. Again, consult a
trained professional to advise you.
Secondly, support the liver. It is the organ responsible for
detoxifying the body, day in and day out. In Tibetan Medicine we use
three herbs to detoxify the body and liver: Terminilia chebula,
Terminilia bellerica, and Emblica officinalis. They are known as the
"kings of medicine." These herbs are in our Seven Precious Decoctions
Tea and are good, gentle, deep cleansers. Drink plenty of clean water,
10 to 12 cups per day.
Third, simplify your diet to grains, beans, fresh vegetables,
and a little fish or chicken. Eliminate all sugar and "junk foods." We
believe the pathogens "feed" on these foods and grow stronger. You need
to starve them out—it's your body after all—but it is not
easy. They put up a fight and make you feel lousy as they die off. It
takes a long time, but once they are gone you can be a little more free
with your diet.
In Tibetan Medicine butter is thought to be very good in a
case like this. It's even better if you can get good farm-fresh butter.
I have heard that butter is unpopular in the West now. That's strange.
Perhaps it is how it is processed. Here we even drink butter in our
tea. Fourth, you need to practice some type of
contemplation—prayer, meditation, even counseling—to help
you find some way to look at your life and give thanks for your
blessings. This is very important for everyone but vital for people
with chronic diseases.
Let's get back to your particular case. In Tibetan Medicine
the patient's personality, use of words, and the way he describes his
condition is taken into account when advising the patient. This is not
good or bad—it simply reflects the individuality of the patient
and his condition. You use the words "I cannot" several times in
describing your life. Want a reality check? You will not get your "old
life" back. No one does, with or without illness. Time brings changes,
and our only choice is to change with it or pine away for some past
"paradise" or future "nirvana." Live here now with what you have. You
may not be able to compete nationally, but you can still go for walks
and stretch. You may not be able to maintain your position as a "top
performer" at your social service job, but you can still serve people
in smaller, perhaps more direct ways. Smiling at someone on the street
is a type of service, and how many people do that? You might not be the
toast of the town, but you can still cultivate friendships by sharing
your life with others and sharing in theirs. You might not be the
greatest lover who ever lived, but you can still lie in the arms of
someone you love and who loves you. What could be better than that?
--
Amchi Trinley Wangchuck
CFSupport Email System Changes
We started our group email list on a PC's address book,
then went over to Onelist. Onelist merged with eGroups. Recently, eGroups became part of Yahoo Groups.
What does this mean to us? All the features from eGroups have carried
over, and some new ones have been added. All of our old eGroups email
and webaddresses will continue to work. And all of our group
information and membership has been maintained. There's no need to
resubscribe to the
email list.
For email only users, nothing will change, except that you may notice
the new "yahoogroups" addresses on our email announcements. You will not
need to obtain a Yahoo! ID or do anything else to continue receiving our emails.
For those who use web services such as the email archives, the first
time you visit again, you will need to merge your existing eGroups
account with a new or existing Yahoo! ID.
Yahoo!
has set up a step-by-step wizard process.
A reminder of how our email
list operates, as well as its new addresses:
CFSupport is an announcement list. Only the list moderators (2001: Elly, Toni, and
Ira)
are able to send out messages to subscribers. If you have a relevant
message to forward to the entire list, please send it to CFSupport-owner@yahoogroups.com
.
You can subscribe, view our archives, unsubscribe, or change your preferences at anytime. Here are some of the basics:
AACFS Conference In Seattle Jan 2001
January 26-29, 2001 (Fri-Mon): Fifth International AACFS Conference in
Seattle, WA.
The American Association For Chronic Fatigue Syndrome is
dedicated to the promotion of scientific research and improved patient care.
Fri, January 26, 2001: The CFIDS Association of America's
(704-365-2343) CFIDS Support Network (CSN)
held a Membership Reception at the Crowne Plaza Hotel. The reception
was free to all current CSN members, typically support group
leaders.
Tuesday, January 30, 2001: Meeting of the Department of Health and
Human Services Chronic Fatigue Syndrome Coordinating Committee (CFSCC)
was held in Seattle, WA at the WestCoast Grand Hotel on 5th Avenue.
This
meeting immediately followed the biannual AACFS meeting. See The D.C. Dispatch: Your CFIDS Public Policy Report by Vicki C. Walker, Spring 2001.
Update 05/06.
AACFS is now IACFS and their website is www.iacfs.net.
Oct 2000 State of the Science of CFS Conference Report
The report of the Chronic Fatigue Syndrome State of the
Science conference held
October 23-24, 2000 is posted on the NIH's Office of Women's Health website with other reports: http://orwh.od.nih.gov/cfs/cfsReports.html.
Role Of Orthostatic Intolerance In CFS
Scientific panel issues consensus statement calling for
more research
WASHINGTON, DC- Orthostatic intolerance (OI), a condition in which
upright posture provokes dramatic changes in heart rate and blood pressure, may
have a connection to chronic fatigue syndrome (CFS). This was one conclusion
reached by a panel of experts that convened in December for the first in a series
of scientific symposia on CFS sponsored by The CFIDS Association of
America.
OI is an umbrella term for several disorders that may be due in part to
abnormalities in the autonomic nervous system. The connection between
OI and CFS was first explored in 1995, when researchers at Johns
Hopkins University identified at least one form of OI in 96% of CFS
patients tested.
"The field of OI is one of the most promising avenues for gaining more
insights into CFS," said panel chair Tim Gerrity, executive director of the
Chronic Pain & Fatigue Research Center at Georgetown University. "Conducting
more research on the similarities between the two conditions could directly benefit the
millions of people worldwide who live with this devastating illness."
Following a day of presentations and discussion by experts, an
independent panel composed of well-respected researchers and practitioners in the fields
of endocrinology, epidemiology, pediatrics, rheumatology, neurology,
psychology, allergy, and internal medicine developed a consensus statement on the
key issues surrounding CFS and OI.
The panel agreed that:
· There is evidence of an altered autonomic nervous system
and/or circulatory system in CFS. The panel noted that the symptoms of OI are
often seen in CFS patients and that the physiological stressors that exacerbate OI may
also intensify symptoms in CFS patients.
· The exact relationship between OI and CFS is still
unclear. Although both conditions may be preceded by a viral-like illness, patients with OI
(but not CFS) often do not report hallmark symptoms of CFS, including severe
fatigue, post-exertional malaise, joint and muscle pain, recurrent sore throat,
and painful lymph nodes.
· Methods for studying autonomic nervous system dysfunction
in CFS are available. Although a number of conditions such as OI,
Addison's disease, and acute Epstein-Barr infection have clinical
features in common with CFS, there are no human models that
sufficiently reflect the spectrum of CFS symptoms. However, the panel
pointed out that animal models and tests
measuring the patient's response to a specific activity or
pharmacologic
challenge can be
used to study aspects of autonomic regulation in CFS.
· There are relationships between autonomic nervous system
dysfunction and other abnormalities seen in CFS patients. The available
data suggest that CFS
patients have altered relationships between the autonomic nervous
system and the cardiovascular, neuroendocrine, and immune systems. The
panel
recognized that the extensive interdependence of these systems has made
discovery of a
primary cause of CFS a constant challenge for the research community.
· More research is needed to further define the possible
interaction between OI and CFS. The panel outlined future research needs, including
more studies of autonomic function and altered brain perfusion, examination of the
relationships between the autonomic nervous system and other body systems, and
testing of therapeutic interventions to directly impact patient care in CFS. The
panel also suggested ways to overcome some of the methodological barriers
researchers have faced, including subgrouping CFS patients to handle the diversity of
the patient base and using standard definitions of OI terms to ensure that future
study results can be compared.
The CFS assessment symposia series is designed to examine the role of
the neurological, endocrine, circulatory, and immune systems in CFS. The
symposia gather experts to evaluate research findings, identify the most
promising next steps for research, define research and funding priorities, and create
research collaboration teams.
The CFIDS Association of America is the nation's leading organization
working to conquer this illness. Since 1987, the Association has invested nearly
$12 million in education, public policy, and research programs in its
efforts to bring an end to the suffering caused by CFS.
CFS, also called chronic fatigue and immune dysfunction syndrome
(CFIDS), is defined as a debilitating and complex disorder
characterized by profound fatigue, pain, and cognitive problems not
improved by bed rest and that
may be worsened by physical or mental activity. Persons with CFS
function at a substantially lower level of activity than they were
capable
of before the onset of the illness.
The CFIDS Association of America, Inc.
Advocacy, Information, Research and Encouragement for the CFIDS
Community
PO Box 220398, Charlotte NC 28222-0398
Resource Line: 704/365-2343
Fax: 704/365-9755
WWW: http://www.cfids.org
General E-mail: info@cfids.org
New Social Security Regulations Increase SGA and TWP Earning Levels And Increase SSI Student Earned Income Exclusion for 2001
The Social
Security Administration published final regulations on December 29th to
make 3 significant changes in the work incentives provisions, effective for January 2001.
- The substantial gainful
activity amount for 2001 is $740/month.
- If earnings are over
$740/month and receive SSI, you will qualify for 1619(a) Medicaid.
- The trial work period
monthly amount for 2001 is $530/month. For a self-employed individual,
if the individual’s earnings are not over $740/month, SSA
will consider that the individual was performing substantial gainful
activity if the individual worked more than 80 hours in a month. (This
is a change from 40 hours in a month).
- The monthly earned income
exclusion for students who receive SSI for 2001 is $1,290, and the
annual exclusion is $5,200.
- All of the above amounts
will be adjusted each year.
SSA's Employment Support For People with Disabilities Page
Employment Law Referrals
The D.C. Employment Justice Center has a page of links for all kinds of law referrals including a site dedicated to DC area pro bono options.
Steriod Medication No Help To CFS Patients Who Get That Faint Feeling
NATIONAL INSTITUTES OF HEALTH
National Institute of Allergy and Infectious Diseases
NIH NEWS RELEASE RELEASE Tuesday, January 2, 2001 4:00 p.m. EST
Besides suffering severe tiredness and a host of other symptoms, some
patients with chronic fatigue syndrome (CFS) find standing for long
periods makes them lightheaded or even faint; eventually their blood
pressure drops so low they can't remain upright, a condition known as
neurally mediated hypotension (NMH). But according to a new study in
the "Journal of the American Medical Association", a steroid hormone
drug, fludrocortisone, often used to treat low blood pressure, by
itself does not alleviate these symptoms in CFS patients any better
than a placebo. Although fludrocortisone didn't help the patients in
this study, other drugs or drug combinations, including certain heart
medications, may still benefit them and need to be formally tested, say
the authors from the National Institute of Allergy and Infectious
Diseases (NIAID) and the Johns Hopkins University School of Medicine.
"This was an attempt to test one important recent hypothesis about what
causes CFS," says NIAID co-author Stephen Straus, M.D., who also serves
as director of the National Center for Complementary and Alternative
Medicine at the National Institutes of Health (NIH). "The results do
not completely negate NMH's role in a subset of CFS patients, but it
clearly tells us that fludrocortisone by itself is insufficient to
alleviate that form of low blood pressure adults in the United States as
well as a proportionally smaller number of adolescents and children.
Although debilitating fatigue is the hallmark of the syndrome, memory
and sleeping problems, muscle aches and other symptoms make the
ordinary activities of daily living a struggle for many people with
CFS. Because scientists have not yet pinpointed the cause of CFS,
treatment is targeted to specific symptoms, such as the lightheadedness
that prompted the investigation of fludrocortisone as a possible
remedy. In a pilot study conducted in the mid-1990s, Peter Rowe, M.D.,
a Hopkins pediatrician and co-author of the new report, gave some
people with CFS and NMH fludrocortisone or other drugs and found that
their CFS symptoms improved. Because fludrocortisone appeared to be the
most promising, Dr. Rowe began a collaboration with the NIAID team to
rigorously test the hypothesis that NMH might be an underlying and
treatable cause of CFS symptoms. The two centers together screened 750
applicants and winnowed this group down to 171 potentially eligible,
moderately ill adult CFS patients. Of those, 100 enrolled in the study
after also being diagnosed with NMH by a two- stage tilt-table test
performed by the Hopkins group. During the test, the volunteer lies on
a table and is loosely held in place by safety straps and a footboard.
The table is then tilted upright to 70 degrees for up to 45 minutes,
and after a brief respite, for as much as 15 minutes more. During
either stage, the investigator stops the test if the volunteer faints
or develops low blood pressure. The 100 participants were randomly
divided into two groups. Half received fludrocortisone (0.1 milligram
per day) and half received placebo for nine weeks. Neither the
participants nor the study team know which regimen the patients
received. Based on standardized, daily self- ratings of overall
wellness and other measures of illness severity, however, they
experienced no significant difference in benefit: 14 percent of those
treated with fludrocortisone had a notable improvement in overall well-
being compared with 10 percent of those in the placebo group. This is
the largest and only randomized, placebo-controlled study to
investigate the potential role of NMH in CFS. Since 1996 when the study
began, well-designed clinical trials have found that four different
drugs, some of which have a more direct effect on blood pressure, can
benefit some people who don't have CFS but who experience recurrent
fainting due to NMH. According to Dr. Rowe, these studies provide a
rationale for testing such treatments in patients with CFS and NMH.
"CFS is a complex and debilitating disorder," Dr. Straus concludes,
"and serious research efforts at NIH and elsewhere continue in an
effort to understand how it occurs and how best to treat it." NIAID is
a component of NIH.
NIAID supports basic and applied research to prevent, diagnose, and
treat infectious and immune-mediated illnesses, including HIV/AIDS and
other sexually transmitted diseases, tuberculosis, malaria, autoimmune
disorders, asthma and allergies.
NIAID press releases, fact sheets and related materials are on www.niaid.nih.gov.
Illness Experience Reflected In Poetry and Art
Member Tonette Hartmann writes: "I just submitted this 5
stanza Haiku in a poetry contest. I think it encapsulates
this disease, yet in an optimistic light. Anyway, thought maybe you'd
like to print it in the newsletter and/or just send it to whomever you
want, in the hopes that it might bring some recognition, comfort and
hope to our suffering brothers and sisters."
My Journey
Life is a surprise!
Daily, I encounter change --
Rarely, by my choice.
I was a singer,
A mother of two children,
Always on the go.
Suddenly -- illness.
And that which had defined me
Slowly disappeared.
The "old" me is gone.
Yet, each day I discover
Another new gift.
I no longer sing.
Instead, my voice resonates
When I write Haikus.
Tonette Hartmann
Copyright ©2000 Tonette Hartmann
Thanks, Tonette, for sharing this wonderful poem with us!
Tonette's
poem can also be viewed online at:
http://www.poetry.com/publications/display.asp?E=1&ID=W1657849&BN=999&PN=1
.
[and as of late 2006, at CFSupport's Art Gallery]
The poem reminded us of the many creative ways in which people with
CFS, FM, and other chronic illnesses have expressed their experiences
through essays, poetry, and graphic arts. See our Resources list for Art, Poetry and Film and these favorites:
Links updated 02/07
Nourishing Traditions Suggestions for CFS
Last month at our meeting, Sally Fallon, author of
Nourishing Traditions discussed how traditionally prepared
foods heal and protect us from disease (WAPF Meeting Notes). Sally is
president of the Weston A. Price Foundation
in Wash DC, a group dedicated to helping people understand about
traditional food and keeping modern access available. Sally mentioned that if people are members of
her organization by December, they would receive a Shopping Guide for finding traditional ingredients.
Membership is $40, but if you are on disability, the senior rate of $25
per year applies.
This Q&A about CFS by Tom Cowan, MD, who writes for WAPF's journal Wise Traditions, was on WAPF's site. (Btw, I had soaked oatmeal + ghee for breakfast and fermented
cucumbers at lunch. I eat nuts that have been soaked
and crisped. It has been not too hard and it tastes good and makes
me feel a little better. I also am taking cod liver oil pills as Sally and
Geoff recommended. -Elly)
The complete (same) Q&A appear at these 2 websites:
http://www.fourfoldhealing.com/Q&A%20Chronic_Fatigue.htm and
http://www.westonaprice.org/askdoctor/chronicfatigue.html
Here is an excerpt:
Q: I am a 45-year-old woman CFS for 3 years. It seems I
have tried everything. For a short time I got better but now I feel no
better off than I did two and a half years ago...Can you help?
Answer: I hope so. ... I explained ... my view of chronic
fatigue syndrome which I will admit even to me seems almost absurdly
simple. That is, our energy level, or our energy resource, is like a
flowing river. This river has many tributaries or areas to which our
energy is diverted. The main energy drain for most of us is the
digestion of our food. When we ease this energy drain going to
digesting our food, we suddenly have a huge reserve available for tasks
such as muscle function, thinking, exercise or other more creative
pursuits. This is the essence of chronic fatigue syndrome. ... The main
contributing factors I have found in making the digestion weak and a
greedy energy drain are eating processed food and the overconsumption
of carbohydrate-type food, even whole grains.
The simple intervention.. which ... has had dramatic and
lasting results, is fairly simple. First, ... eat no more than
10-15% of as carbohydrate-type food, including grains,
pasta, flour, fruits, sugars, fruit juice, etc. and the only allowable
grains are either fermented (sourdough) bread or whole grains like
those discussed in Nourishing Traditions. ....
Second, on a daily basis, use some fermented food or
drink. My favorite suggestion is Beet Kvass, for which a recipe is
given in Nourishing Traditions, because it is also helpful for liver
cleansing. Drink three times a day. ...
Third, use Celtic sea salt only, as this is the only salt with the
trace elements present that are so vital to proper enzyme functioning.
Fourth, daily castor oil packs over the liver area for one hour each
day. These packs aid digestion, detoxify the bowels, and cleanse the
liver. These fundamental changes usually will have a dramatic impact on
your symptoms within one month and, unlike many therapies, the benefits
will increase, not diminish, over time.
-Tom Cowan www.fourfoldhealing.com
This article first appeared in the Price-Pottenger Nutrition Foundation
Health Journal in 1999.
Your Body's Many Cries For Water
Here is a book that may be relevant for those with dehydration issues.
Your Body's Many Cries For Water by Fereydoon
Batmanghelidj (July 1995, Paperback)
Editorial Review
This book explains a new discovery about the cause and cure of many
painful conditions and degenerative diseases. As a result of extensive
research into the role of water in the body, the author, a medical
doctor, has found that chronic dehydration is the cause of many
conditions including asthma, allergies, arthritis, angina, migraine
headaches, hypertension, raised cholesterol, chronic fatigue syndrome,
multiple sclerosis, depression, and diabetes in the elderly. The body
possesses many different thirst signals. A dry mouth is not a reliable
indicator of your body's water needs. This book shows how to recognize
the various thirst signals, and helps you learn to understand when your
body is calling for water. In this way, you can prevent, treat and cure
a variety of conditions of ill health, at no cost, with nature's
miracle medicine: water. The book explains how much water one needs to
drink a day to stay healthy, and why tea, coffee, and sodas are not
good substitutes for water.
Washington Post on "Zits" and FM
The Washington Post style section had a
very moving story about the families of Jerry Scott and Jim Borgman,
the creators of the comic strip "Zits". The story is "Drawn From Life"
by Laura Sessions Stepp, Washington Post Staff Writer, Friday, December
1, 2000; Page C01. The section about the Borgmans focuses on Lynn
Borgman's struggle with fibromylagia and her death from a blood clot
that developed following surgery undergone to relieve neck and back
pain:
"By the mid-1990s, Lynn was having trouble keeping
everything going. She would make plans for the kids and then be too
tired to carry them out. She complained of fatigue and pain. Jim cooked
supper, washed laundry, read to the kids at bedtime, transported them
to and from school.
"Lynn took long naps, tried yoga, acupuncture,
meditation. Eventually her doctors diagnosed fibromyalgia, a chronic
disorder of the musculoskeletal system whose origin is unknown.
" 'Fibromyalgia sets up shop in your family before you
have a name for it,' says Jim, a bear of a man with curly gray hair and
kind eyes the color of slate. 'It involves a slow evolution of duties
passed from one partner to another, a slow fading away of that person's
presence in the family.' "
More Items In The News
The latest ME AND CFS Capita
Selecta Quarterly (Laymen's version), from David Axford and EM
Goudsmit, is now available online at: http://freespace.virgin.net/david.axford/update15.htm .
The recent New Yorker
article on FM - "Hurting All Over" by Jerome Groopman, The New Yorker,
Nov. 13, 2000 - can be read online at: http://listserv.nodak.edu/scripts/wa.exe?A2=ind0011c&L=co-cure&F=&S=&P=5253 . As Elly noted in her Nov. 12 email, the
middle section of the article interviews non-believers and may be
upsetting to some. Lisa Lorden wrote a critique of article on About.com's CFS section, but it is not longer available.
Gulf War Symptoms Linked to
Brain Damage Monday November 27 6:15 PM ET
CHICAGO (Reuters) - Symptoms such as memory loss and dizziness suffered
by US veterans with Gulf War syndrome can be correlated to specific
areas of the brain where cells have died, probably from chemical
exposure, researchers said on Monday.
The Scientist
14[22]:35, Nov. 13, 2000
http://www.the-scientist.com/
OPINION
Scientific Medicine and Chronic Fatigue Syndrome
By Mary E. McNamara, MBA, is vice president and director of research,
New Jersey CFS Association Inc., Allenhurst, N.J.
Recent Books
For helpful books, please
see our website's bookstore at geocities.com/cfsnova/bookstore.html . Each purchase you make at Amazon.com
through us helps the CAA's vital
activities!
"Plague Time"
by Paul Ewald
Evolutionist Paul Ewald argues that viral and
bacterial infection is a primary cause of modern chronic diseases such
as cancers, Alzheimer's, and heart disease. This book was also the
subject of an article in the Nov. 27 issue of Newsweek Magazine.
"The Relaxation and Stress Reduction Workbook, Fifth
Edition" by Martha
Davis, Ph.D., Elizabeth Robbins Eshelman, M.S.W., and Matthew McKay,
Ph.D. The Workbook, now celebrating its 20th
anniversary with this updated edition, covers nutrition,
self-hypnosis, visualization, breathing, time management, and nine
other methods for coping with stress.
"Eating for IBS" by Heather Van Vorous
If you have irritable bowel syndrome, lactose
intolerance, Crohn's disease, or other digestive problems, try the 175
low-residue recipes (with nutritional analysis) in "Eating for
IBS," written by Van Vorous, a sympathetic sufferer who runs
the IBS message board on iVillage.
"The High-Protein Cookbook" by Linda West Eckhardt and Katherine West Defoyd
The High-Protein Cookbook has more than 150 simple
high-protein, low-fat, low-carb recipes, each requiring 30
minutes or less to prepare.
Genetic Link To CFS
From AAP 29oct00 16.35 (AEDT)
CHRONIC fatigue syndrome (CFS) may be linked to a rare genetic mutation
which starves the body of the steroid hormone cortisol, researchers
have discovered.
A study of 32 members of one Australian family who each suffers CFS
found they all had mutations of the gene, providing the first evidence
for a genetic link to the disease. Endocrinologist Dr David Torpy
(Torpy), whose research at the University of Queensland identified the
mutation, cautioned that it was unlikely to be the only cause of such a
complex syndrome. However, he will tell the 11th International Congress
of Endocrinology in Sydney tomorrow that finding the cortisol link may
lead to new successes in treatment for some CFS sufferers. "We are
planning to trial a couple of different glucocorticoid supplements," he
told AAP. Cortisol is produced by the adrenal glands in response to
stress, and affects immune response.
Dr Torpy, a senior lecturer with UQ's department of medicine at
Greenslopes Private Hospital, has found that the genetic mutation
linked to CFS affects the ability to produce a protein - cortisol
binding globulin - which is essential for the transport of cortisol in
the bloodstream. "People who inherit one copy of the mutated gene
produce only half the normal amount of protein, and people with two
copies do not produce any of this protein at all," he said. People in
the study family with one or two mutations have a marked tendency to
develop a particular kind of chronic fatigue which hit them worst in
the morning.
The gene discovery could potentially benefit many CFS sufferers but
researchers did not yet know what proportion of people with the disease
had the mutation. CFS patient groups in Queensland and Victoria were
cooperating with a new study to determine whether it was rare or
common. "If it turns out to account for even one per cent of chronic
fatigue syndrome, then this would be a big advance, especially if it is
treatable," Dr Torpy said. "Chronic fatigue is frustrating for doctors,
because apart from excluding well-recognised causes such as depression,
thyroid problems or iron deficiency, you just can't help people." About
two per cent of the population have fatigue lasting longer than six
months, which, with additional symptoms such as sore throat, swollen
glands or difficulties with memory and concentration, may lead to a CFS
diagnosis.
Dissolution
Of Montgomery County, MD, CFIDS Group
November 2000 was the last meeting for the Montgomery
County, Maryland CFIDS support group. They have lost their room in the
Unitarian Church and decided -- at least for now -- to dissolve the
group. Members have been advised to attend our monthly meetings of the
Northern Virginia CFS Support Group.
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