January 2005
Vol. II, Issue #14
Bergen CFS Support Group Newsletter
Meeting
Report
The meeting was held on Sunday January 16th at Pascack Valley Hospital. Ken Andes made his third visit to our group. The focus of this session was Tai Chi that can be performed while sitting in a chair. It included some non-strenuous stretching followed by a basic Tai Chi movement that can provide a restful sense. This was followed by a variation that tends to have a more stimulating effect. Ken cautioned those present to be selective when choosing a Tai Chi or acupuncture practitioner. Training and reputation are important factors.
Lee
Cohen, PhD, of the CF Alliance http://health.groups.yahoo.com/group/CFAlliance/
also attended. She came to speak to our
member Ed DeHooge. The CF Alliance had
recently printed a very favorable review of his book Fibro
Man chronicling his journey with CFS and FM.
Points to
Ponder
(This
is from the December CFIDS.org online publication (for those who
may have missed the information last month)
On
Nov. 18, 2004, Unum-Provident Corp., the nation’s
largest disability carrier with 25 percent of the market nationwide,
settled a
multi-state investigation into claim denials. Unum will pay $15 million
in
fines and will be forced to re-examine 200,000 denied claims as
Unum-Provident
Corp. …Persons with CFIDS (PWCs) may represent a sizable group within
those
improperly denied benefits. The investigation found that Unum relied
solely on
their in-house physicians and often failed to consider both physical
and
psychological conditions in determining whether to deny or terminate
benefits.
Scores of PWCs have reported these problems in their dealings with Unum
and
other insurers now owned by Unum. We’ve covered some of these stories
in the CFIDS
Chronicle over the years. Unum insures 25 million people, through
individual and group policies written by: Unum Life Insurance Co. of
America,
the Paul Revere Life Insurance Co., the Provident Life and Casualty
Insurance
Co., Provident Life and Accident Insurance Co., and the First Unum Life
Insurance Co.
If you have been denied benefits under a Unum-held policy,
contact your
disability attorney or visit http://www.unum.com/newsroom/news/corporate/11032004_settlement.aspx
for details about the reconsideration process. The National
Organization of
Social Security Claimants Representatives provides a network of
attorneys
specializing in disability law. You can reach their referral service at
800-431-2804.
Additional
info from www.cfids.org
Winning
the
Long-Term Disability Battle Are
you considering making a claim with your insurer for long-term
disability
benefits because CFIDS is making it too difficult to continue working?
Have you
already filed a claim, only to have it questioned by your insurance
company? Or
has your claim been denied, and you're thinking about how to launch an
appeal? If
you're disabled by CFIDS and you are covered by long-term disability
insurance,
we have an article for you. Writers Justin Frankel and Jason Newfield
are
attorneys who have handled numerous disability insurance claims,
appeals and
litigation involving CFIDS and fibromyalgia. In their article, they'll
guide
you through the minefields that patients often step in inadvertently,
"blowing up" their chances for winning disability benefits. Just go
to http://www.cfids.org/cfidslink/disability.asp to
read this
practical and informative overview.
CFS
Awareness Day
May 12, 2005
is
annual CFS/FM Awareness Day. It is also
International ME/CFS Awareness Day.
There is currently a campaign underway to increase awareness
through
letter writing. This is being called
the Million Letter Campaign. This
information came from Dominie Bush
Dear FMS/CFIDS
Sufferers,
Have you ever noticed the blank stares you get when you tell people you
have fibromyalgia? They always
say, "What's
that?!" If you say you have chronic
fatigue syndrome, they say, "Well, I get tired too!!"
Would you say that "Fibromyalgia
Awareness" is
lacking in our society??! The GOOD NEWS is that we can have a MAJOR IMPACT on the media
and the world BEFORE the next Fibromyalgia
Awareness Day (also International ME/CFS Awareness Day) on May 12,
2005! We
are
hoping that a MILLION
letters will be
sent! Those who want to participate need to write only
one
letter and just change the address at the top to go to each of the
recipients.
The laws are way too tough for people to win their disability
cases,
because FMS/CFIDS is an invisible disease. In only 3 days I have
received 400
emails from sufferers of the FMS/CFIDS disorder who are enthusiastic
about this
idea. It should not cost more than $1.85
(USA) to mail these letters for
each patient. We may even get this aired on television!
This is about millions of sick people forced to go through the
barbed wire
fence to get some help.
Letters need to be ONE PAGE ONLY. We all need to
send the
letters out ON THE SAME DAY as everyone else so that
this gets
noticed. The date we are aiming for is MAY 1,
2005, so that the letters are received at the same time and
just
prior to Fibromyalgia Awareness Day (International ME/CFS Awareness
Day) on May
12, 2005. The more
letters that are sent,
the better the chance will be for all of us." If
victims of FMS/CFIDS mail their letters on MAY 1, 2005,
we will speak as ONE VOICE and hopefully capture national
attention for
this illness. This will be much more effective than anything
else we
can do as individuals!
Your ONE PAGE letter should contain the following:
1. YOUR NAME
2. LOCATION (City, State
and/or Country)
3. OCCUPATION or achievements prior to FMS/CFIDS
4. DATE OF ONSET of your FMS/CFIDS (and what you
think
caused it)
5. SYMPTOMS you suffer from
6. HOW this illness has affected your career,
finances, relationships, family, etc. (be sure to mention any LOSSES you have experienced)
7. WHAT you are asking for: e.g., recognition of
this
illness, for doctors and lawyers to take FMS/CFIDS seriously for
disability
cases, for understanding from family and friends, for money
to be
spent on research for a cure, for media coverage, or whatever else
comes
to mind.
(Most of us could write a book about our illness, but
please limit your letter to one page.)
1. THE FIRST LADY, WHITE
HOUSE
1600
Pennsylvania Ave., NW
Washington,
DC 20500
2.
Story Editor
20/20, ABC NEWS
147
Columbus Ave., 10th Floor
New
York, NY 10023
3.
FOX NEWS
5151
Wisconsin Ave., NW
Washington,
DC 20016
4.
Story Editor
60 MINUTES,
CBS NEWS
524 West
57th St.
New York,
NY 10019
5.
Senior Supervising Producer
MONTEL WILLIAMS
433
West 53rd St.
New
York, NY 10019
CANADIANS: Please use the
following
address instead of the White House (#1 above): CANADA
PENSION PLANS, HUMAN RESOURCES DEVELOPMENT CANADA, DISABILITY
DEPARTMENT, P.O.
Box 2710, MAIN STATION, EDMONTON, ALBERTA,CANADA,T5J 4C2
Other
suggested recipients are:
Dr.
Phil Show
5482
Wilshire Blvd., #1902
Los
Angeles, CA 90036
Barbara
Walters
23852
Pacific Coast Hwy., Suite 401
Malibu,
CA 90265
Also, you
can write your Congressman by visiting: http://www.arthritis.org/advocacy/priorities/priorities_contact.asp
But
please
remember that we don't want to dilute the quantity
of our letters to individual recipients, so if you can only send 5
letters, please send them to the 5 MAIN addresses listed above. Oprah Winfrey is
not included in this
list, because she no longer accepts unsolicited input for her shows.
We
need to
build enthusiasm and momentum in the fibromyalgia community
between now
and MAY 1, 2005! Please
tell fibromyalgia support groups, friends with FMS/CFIDS, and even
doctors
who have experience with FMS/CFIDS patients and understand this
condition. Forward this information to anyone you know
with
FMS/CFIDS or post it on fibromyalgia newsgroups. We
need to get the word out!
I
don't know
of a better way to accomplish our goal of FMS/CFIDS Awareness! It
will
take just a little effort from each of us in telling our
own unique
FMS/CFIDS story in "one page" form and sending it to people who have
power and influence in our society. Remember, we are doing this
not just
for ourselves, but for millions of sufferers worldwide.
Dominie Bush dom@fms-help.com
P.S. Million Letter Campaign T-SHIRTS & SWEATSHIRTS are great for individuals or support groups! Pattie [Caprio] designed the logo which appears at the top of this page and also on the shirts.
|
Benefit
of Ribose in a Patient With Fibromyalgia Posted
01/07/2005on www.medscape.com Benjamin
Gebhart, Pharm.D.; James A. Jorgenson, M.S., FASHP |
Ribose
was
added to the existing treatment regimen of a woman with fibromyalgia,
resulting
in a decrease in symptoms. It has been postulated that patients with
fibromyalgia may have an alteration in muscle adenine nucleotide
metabolism,
leading to depleted energy reserves and an imbalance in cellular
adenosine-triphosphate:adenosine 5'-diphosphate:adenosine
5'-monophosphate (ATP:ADP:AMP)
ratios with an abnormal energy charge. As a key component in adenine
nucleotide
synthesis, ribose supplementation may be useful in such patients.
Fibromyalgia
is
a syndrome that is manifested by generalized muscle pain and additional
systemic symptoms of fatigue, tenderness and stiffness in multiple
joints,
sleep disturbance, and alterations in bowel activity. The specific
etiology is
unknown; however, changes in muscle histology, energy metabolism,
oxygen
utilization, and the neuroendocrine stress-response system have been
postulated
to play a role in the development and persistence of this disorder.[1] Low levels
of muscle
adenine nucleotides, reflected in depleted energy reserves and an
imbalance in
cellular adenosine 5'-triphosphate:adenosine 5'-diphosphate:adenosine
5'-monophosphate (ATP:ADP:AMP) ratios with an abnormal energy charge,
have been
reported.[2-4] The
unknown cause and
varying presenting symptoms make fibromyalgia a therapeutic challenge
for
practitioners.[5-7]
The
management
of patients with fibromyalgia requires the integration of both
pharmacologic
and nonpharmacologic approaches. Pharmacologic options have included
tricyclic
antidepressants, selective serotonin receptor antagonists, analgesics,
benzodiazepines, antiinflammatory agents, and corticosteroids.[5, 6, 8] Routine
daily exercise
programs, dietary modifications, alternative therapies such as
biofeedback and
hypnotherapy, and nutraceuticals such as S-adenosyl-L-methionine (SAMe)
have
also been explored.[9]
Unfortunately, less than 50% of patients achieve any meaningful
relief of their symptoms with use of those therapies.[5]
We
describe the case of a patient with fibromyalgia who had symptomatic
relief
when ribose was added to her existing treatment regimen. There have
been
anecdotal reports on the benefits of ribose in patients with
fibromyalgia in
whom conventional therapies have failed; however, to our knowledge,
this is the
first published case of use of ribose for this syndrome
A
37-year-old
woman had daily episodes of intense musculoskeletal pain and stiffness,
mental
"cloudiness," bouts of diarrhea, and sleep disturbance. As she was a
surgeon, these symptoms compromised the skills necessary to perform her
daily
duties in the operating room. She was diagnosed with fibromyalgia by
exclusion
of other diseases and syndromes and in accordance with the American
College of
Rheumatology criteria.[10]
The
patient was
treated with ibuprofen 800 mg twice/day, valdecoxib 10 mg once/day,
diphenhydramine 50 mg-acetaminophen 1000 mg at bedtime, and physical
therapy
once/day. She stated that this therapeutic regimen had limited benefit
and that
the adverse effects from these drugs further impaired her ability to
perform
her operative duties.
Approximately
7
months later, in addition to her regular drug therapy, the patient
began taking
CORvalen (Bioenergy, Inc., Ham Lake, MN), a ribose-based product. She
took 5 g
of CORvalen mixed in water twice/day. She experienced no adverse
effects, and
after 14 days she reported a decrease in her symptoms. Specifically,
she noted
an improvement in sleep, mental alertness, a marked decrease in joint
pain, and
normal stools. This trend continued, and after an additional month of
CORvalen
therapy she reported near-normal functioning with a major reduction in
her
symptoms.
After
another
month of taking CORvalen and feeling "normal," the patient elected to
discontinue the drug. Within 7 days, she regressed to her initial
fibromyalgia
state, as reflected in joint pain, sleep disturbance, morning
stiffness,
trigger-point flares, and diarrhea. She resumed taking CORvalen, at the
same
dosage as before, and a major reduction in her symptoms again occurred
within
14 days. She noted continual benefit for the next month while taking
CORvalen.
She stopped taking the drug for a second time after this additional
30-day
period, and once again she experienced a reemergence of symptoms. When
CORvalen
was restarted for a third time, the patient's symptoms again subsided.
At
the time of
this writing, the patient was continuing to take CORvalen and was
satisfied
that her symptoms had abated.
Ribose
is a
simple carbohydrate that plays a role in high-energy phosphate and
nucleic acid
synthesis. After ischemia or hypoxia, myocytes have decreased levels of
ATP and
total adenine nucleotides. Several days are required for their recovery
once
normoxia has been reestablished.[11-13] In
patients with chronic hypoxic conditions,
the cellular energy charge may never be fully regained.[14] These
cells have the
capacity to regenerate ATP; however, the pentose phosphate pathway of
glucose
metabolism utilized in the formation of the ribose that is needed to
drive the
regenerative process is slow in both heart and skeletal muscle cells
due to
poor expression of specific rate-limiting enzymes. Supplemental ribose
has been
shown to enhance the synthesis of adenine nucleotides, rebuilding
depressed
energy pools in both the heart and skeletal muscle after an ischemic or
hypoxic
insult.[11,
12]
Ribose bypasses the rate-limiting enzymatic steps of the pentose
phosphate
pathway and accelerates the formation of ATP and subsequent tissue
recovery.[15]
Supplemental
ribose is initially converted to ribose-5-phosphate, subsequently
forming
5-phosphoribosyl-1-pyrophosphate, a molecule key to the synthesis of
ATP
through the de novo purine nucleotide pathway.
The
safety of
ribose has been investigated in standard laboratory and animal
toxicology
models `and in human studies both subjectively and objectively.
Investigators
have concluded that ribose is well tolerated at dosages of up to 60
g/day, with
no significant adverse effects.[16]
Ribose
has been
shown to improve the energy recovery time in skeletal muscle and to
relieve
fatigue, soreness, and stiffness after intense exercise.[12, 13,
17] It also
has been
reported to have a beneficial effect after high-intensity exercise in
sports
medicine. One study concluded that ribose accelerated the replenishment
of ATP
after intense muscle contractions,[18] and
bodybuilders and sprinters have reported
subjective and objective benefits during exercise after the
administration of
ribose.[18-20] However,
other reports
have shown inconsistent results for ribose in relation to improving
short-term
anaerobic exercise performance, muscle strength, endurance, or body
composition
during cycling or resistance training.[20, 21]
Ribose
has also
been investigated for its potential medical efficacy in both animal
studies and
human clinical trials. To date, the most promising data have been
reported in
connection with the application of ribose in cardiovascular disease.
Both
short-term and long-term animal studies found that the use of ribose
after
myocardial ischemia resulted in enhanced recovery of ATP along with
improved
diastolic functional parameters.[22, 23] Clinical
benefits have also been
observed. Patients with coronary artery disease or heart failure have
decreased
myocardial ATP levels. Daily supplemental ribose has been shown to
improve
cardiac function, increase exercise tolerance, and enhance quality of
life in
this population.[24]
Patients
with
fibromyalgia may experience an alteration in physiologic muscle
metabolism. It
has been found that they reach the anaerobic threshold in their muscles
earlier, thereby using less of the available energy-rich phosphate
metabolites
at maximal work capacity.[25] In another
study, patients with fibromyalgia were reported
to have a potential abnormality in high-energy phosphate metabolism, as
evidenced by significantly lower levels of ATP and ADP in affected
muscles as
compared with patients without the disease.[2]
Theoretically,
the effect of ribose on increasing the muscle energy pool could reduce
the
metabolic strain in affected muscles and allow patients to assume a
more active
lifestyle. Considering the known musculoskeletal symptomatology in this
syndrome and the reported benefits of ribose in skeletal muscle
metabolism and
physiology, supplemental ribose appears to have aided our patient in
improving
her quality of life.
Fibromyalgia presents a continuing therapeutic challenge. Ribose is a naturally occurring carbohydrate with documented medical benefits in patients with cardiovascular disease. To our knowledge, this is the first report to suggest its potential benefit in a patient with fibromyalgia, who had had suboptimal results with conventional therapies. We are designing a trial using objective outcome measures to further evaluate the effectiveness of this product in patients with fibromyalgia. This article is reprinted with the permission of James A. Jorgenson, M.S., FASHP; e-mail: james.jorgenson@hsc.utah.edu
Coming
Up
Mark
your calendar. The Spring Conference
will be held on April 30, 2005 at Robert Wood Johnson in New Brunswick. More information will be included in future
newsletters.
Next Meeting
The next scheduled meeting is February 20th from 2-4 PM at Pascack Valley Hospital. It is an open meeting with time to discuss areas of concern to you. We also plan to show a portion of a video from a recent conference if time permits.
This newsletter is intended for CFS patients in the area of this support group. The purpose is to share information and support. Subscription problems: Nancy Visocki at nvisocki@verizon.net. Editor: Pat LaRosa at pat@larosas.net.