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In-Depth Look at FM Medications
Welcome to the December newsletter. Our series, In-Depth Look at FM Medications
continues this month with Mirapex as the featured medication.
This Month's Holidays
- Hanukkah - 12th
- Christmas - 25th
- Boxing Day - 26st
- Kwanzaa Begins - 26st
Events!
Looking for information about Fibromyalgia (FM) or CFS/ME events near you? Our new
Events section will help to keep you up to date on events, meetings, scientific
symposiums, medical conventions and seminars happening in your area.
Click here to submit your FM and/or CFS/ME events to our monthly newsletter and the
FM/CFS/ME RESOURCES website. (There is never any charge for this service.)
Newsletter Ideas
If you have specific ideas or topics you'd like to see covered in our newsletter,
click here and we will do our best to address them in the coming months.
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XMRV Virus: What It Means To CFS/ME Patients
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In what they're calling a landmark finding, scientists from the Whittemore Peterson
Institute announced they've discovered a retrovirus in the majority of people with
chronic fatigue syndrome (CFS/ME). The study was recently published in the journal
Science.
That study showed a virus called XMRV in the blood of 68 out of 101 CFS/ME patients,
compared to just 8 of 218 healthy people.
Since the paper was submitted for publication,
however, researchers say they've further refined their testing methods and have now been
able to identify the virus in 95% of those same blood samples from people with CFS/ME,
and in similar percentages of those with fibromyalgia and atypical multiple sclerosis.
Researchers say this finding shows that the retrovirus is a contributing factor in these
conditions. This is the first time XMRV has been isolated from the blood, and also to
show that it can be transmitted between blood cells. Researchers caution that
this finding only shows an association between XMRV and CFS, it does not prove that
XMRV causes CFS.
What is XMRV?
XMRV was originally discovered in prostate-cancer tissue of men who had a certain genetic
immune-system defect. Researchers say they found a similar defect in people with CFS/ME
and began looking for it in the banked blood samples.
XMRV is transmitted through bodily fluids, not the air. As a retrovirus, it's in the same
class as HIV and HTLV-1, which are known to cause immune deficiencies.
Link Between XMRV and CFS/ME, Fibromyalgia and Other Neuro-Immune Diseases
Work continues to understand how the XMRV retro-virus works within neuro-immune diseases,
but this discovery proves a significant correlation between this serious retrovirus and
these diseases. Their work suggests, but does not prove, that XMRV may be the underlying
cause of CFS/ME. Much additional work needs to be done to understand how XMRV causes
disease and what types of diseases it is linked to it.
A few fibromyalgia samples were tested and yes, they were positive. However the sampling
was very small, and testing will have to continue on a much larger scale to begin to draw
significant conclusions. In addition, many patients with CFS/ME have been given the
diagnosis of fibromyalgia when in fact they have CFS/ME and fibromyalgia.
How Is XMRV Transmitted?
XMRV is thought to be transmitted through body fluids such as blood, semen, and mother's
breast milk but is not transmitted through the air. It is not known whether XMRV is more
easily transmitted than other human retroviruses.
What Does It Mean If I Am Infected With XMRV?
The research continues to fully understand the connection between CFS/ME and XMRV, as
well as what it means to have the virus. We do not know all of the health ramifications
of XMRV or CFS/ME, but we do know that some people with CFS/ME, have on average a lower
life expectancy than someone without this chronic disease. In other studies XMRV has been
detected in very aggressive cancerous prostate tumors. One may have XMRV and not have
CFS/ME as evidenced by positive results of 3.7 percent of our control samples.
Putting It in Perspective
This is hardly the first time scientists have said, "Hey, this could all be linked to a
virus." This isn't even the first retrovirus to cause a blip on the radar screen.
However, the overwhelming percentage of us believed to carry this virus is staggering -
68% in the published CFS/ME study, and as high as 95% of people with either FM or CFS/ME
in post-study work.
In my mind, this study is one more solid piece of evidence that CFS/ME is immunological.
It could also start changing the common view of FM as a neurological or rheumatic
condition. Still, for a study to have any real scientific weight, it has to be
replicated. How many times has a single FM/CFS/ME study pointed one direction, only to
have the next one point the opposite way? This is a great first step, but it's only the
first step.
Diagnostic Tests
When something is as pervasive as XMRV appears to be in us, it seems like a promising
area for a long-awaited diagnostic test. However, XMRV is a recently discovered virus,
and so far, there's no diagnostic test for it. The researchers who made this discovery
are now working on a blood test for the virus. Once they come up with a test, its
accuracy will have to be confirmed in other studies before they start trying to develop
it for clinical use. That will likely take a few years, and even when it's available a
positive XMRV test won't be a positive FM/CFS/ME test - XMRV is not unique to these
conditions, and a small percentage of healthy people carry it. It's my personal opinion
that we have more promising studies underway for diagnostics tests, especially for CFS/ME.
Treatments
The Whittemore Peterson Institute, which made this discovery, says it's currently
securing funding for tests to see if drugs already on the market are effective at
suppressing XMRV. IF they find one or more, it might be possible for some of us to start
taking them right away. However, it'll take a few years for human tests to prove
conclusively that they're safe and effective. If they DON'T find existing drugs that
work, who knows how long it could take for someone to come up with one and get it to
market.
A Cure
Of course, the ultimate discovery would be a cure. Keep in mind, though, that scientists
used cautious wording about this discovery:
"These findings raise the possibility that XMRV may be a contributing factor in
the pathogenesis of CFS."
It's possible that it might contribute. They're not saying "cause." At best, it's a
"possible cause" or "possible partial cause." We have a long way to go before anyone
talks about curing XMRV infection, and before we know whether curing XMRV infection would
cure FM or CFS/ME.
Short-Term Impacts
This study does have some possible benefits in the short term.
- It may help convince your doctor that your illness is both "real" and "viral."
- It may help convince the CDC that it's dealing with an infectious viral disease and
that it should spend its time and money differently.
- It may help raise the public profile of FM and CFS/ME and educate more people about
how serious they are.
I wish I could tell you that this was it - that we'd have a diagnostic test out next
week, with treatments out by next month, and a cure within the next 5 years - but that's
just not the reality. Still, this study could be a major key to solving the puzzle. It's
a major discovery, and only time will tell how important it is to our health. Tell us
what you think of this new discovery and what it means to you.
Leave Your Comments Here!
For more information about the XMRV discovery
click here.
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Sources:
* Lombardi VC, Ruscetti FW, Gupta JD, Pfost MA, Hagen KS, Peterson DL, Ruscetti SK, Bagni
RK, Petrow-Sadowski C, Gold B, Dean M, Silverman RH, and Mikovits JA. Detection of
Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome.
Online October 8, 2009. Science.
* David Morgan, Study isolates virus in chronic fatigue sufferers, Reuters.com, Accessed
Nov. 1, 2009.
* XMRV Research, Questions and Answers, The Whittemore Peterson Institute,
www.wpinstitute.org, Accessed Nov 6, 2009.
* Adrienne Dellwo, About.com Guide to Fibromyalgia & CFS, Fibromyalgia & Chronic Fatigue
Syndrome Retrovirus: What the Discovery Means, About.com Accessed Nov. 6, 2009.
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Hanukkah is celebrated for eight days and nights, starting on the 25th of Kislev on the
Hebrew calendar (which is November-December on the Gregorian calendar). In Hebrew, the
word "Hanukkah" means "dedication."
The holiday commemorates the rededication of the holy Temple in Jerusalem after the Jews'
165 B.C.E. victory over the Hellenist Syrians. Antiochus, the Greek King of Syria,
outlawed Jewish rituals and ordered the Jews to worship Greek gods.
In 168 B.C.E. the Jews' holy Temple was seized and dedicated to the worship of Zeus.
Some Jews were afraid of the Greek soldiers and obeyed them, but most were angry and
decided to fight back.
The fighting began in Modiin, a village not far from Jerusalem. A Greek officer and
soldiers assembled the villagers, asking them to bow to an idol and eat the flesh of a
pig, activities forbidden to Jews. The officer asked Mattathias, a Jewish High Priest, to
take part in the ceremony. He refused, and another villager stepped forward and offered
to do it instead. Mattathias became outraged, took out his sword and killed the man, then
killed the officer. His five sons and the other villagers then attacked and killed
the soldiers. Mattathias' family went into hiding in the nearby mountains, where many
other Jews who wanted to fight the Greeks joined them. They attacked the Greek
soldiers whenever possible.
Judah Maccabee and his soldiers went to the holy Temple, and were saddened that many
things were missing or broken, including the golden menorah. They cleaned and repaired
the Temple, and when they were finished, they decided to have a big dedication ceremony.
For the celebration, the Maccabees wanted to light the menorah. They looked everywhere
for oil, and found a small flask that contained only enough oil to light the menorah for
one day. Miraculously, the oil lasted for eight days. This gave them enough time to
obtain new oil to keep the menorah lit. Today Jews celebrate Hanukkah for eight days by
lighting candles in a menorah every night, thus commemorating the eight-day miracle.
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Source:
* Veterans Day, Wikipedia, the free encyclopedia, wikipedia.org.
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In-Depth Look at FM Medications - Mirapex
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In April we did an article on Medications Used to Treat Fibromyalgia.
We thought it might be helpful for you to learn more about these medications.
This month we will take an in-depth look at Mirapex.
Mirapex has some of the same effects as a chemical called dopamine, which occurs
naturally in your body. Low levels of dopamine in the brain are associated with
Parkinson's disease.
Mirapex is used to treat symptoms of Parkinson's disease, such as stiffness, tremors,
muscle spasms, and poor muscle control. Mirapex is also used to treat restless legs
syndrome (RLS). Mirapex is also being used to treat individuals with FM and CFS/ME.
Before Using This Medicine
Some people taking Mirapex have fallen asleep during normal daytime activities such
as working, talking, eating, or driving. You may fall asleep suddenly, even after
feeling alert. Tell your doctor if you have any problems with daytime sleepiness
or drowsiness. If you are unsure of how this medicine will affect you, be careful
if you drive or do anything that requires you to be awake and alert.
If you are taking this medication for RLS, tell your doctor if your symptoms get
worse, if they occur in the morning or earlier than usual in the evening, or if you
feel restless symptoms in your hands or arms.
Do not stop using Mirapex without first talking to your doctor. You may need
to use less and less before you stop the medication completely.
Dizziness or drowsiness may be more likely to occur when you rise from a sitting
or lying position. Rise slowly and use caution to prevent a fall.
Avoid using other medicines that make you sleepy such as:
- alcohol
- cold medicine
- pain medication
- muscle relaxers
- medicine for seizures, depression or anxiety
They can add to sleepiness caused by Mirapex.
Avoid drinking alcohol, which can increase some of the side effects of Mirapex.
Mirapex may cause hallucinations (the sensation of hearing or seeing something that
is not there), most commonly among elderly people. Call your doctor if you
have hallucinations.
How To Use This Medicine
Take this medication exactly as it was prescribed for you. Do not take the
medication in larger amounts, or take it for longer than recommended by your
doctor. Your doctor may occasionally change your dose to make sure you get
the best results from this medication.
The dose and timing of Mirapex in treating Parkinson's disease is different from
the dose and timing in treating RLS. Follow the directions on your prescription label.
Take each dose with a full glass of water. Mirapex can be taken with or without food.
Take the medication with food if it upsets your stomach.
If you are taking this medication for RLS, tell your doctor if your symptoms get
worse, if they occur in the morning or earlier than usual in the evening, or if
you feel restless symptoms in your hands or arms.
Do not stop using Mirapex without first talking to your doctor. You may need
to use less and less before you stop the medication completely.
Precautions While on this Medicine
Do not use this medication if you are allergic to Mirapex.
Before using Mirapex, tell your doctor if you are allergic to any drugs,
or if you have:
- narcolepsy (a sleep disorder)
- kidney disease
- tremors (dyskinesia) or uncontrolled muscle movements
If you have any of these conditions, you may not be able to use Mirapex, or you may need
a dosage adjustment or special tests during treatment.
Some people taking Mirapex have fallen asleep during normal daytime activities such as
working, talking, eating, or driving. You may fall asleep suddenly, even after feeling
alert. Tell your doctor if you have any problems with daytime sleepiness or drowsiness.
If you are unsure of how this medicine will affect you, be careful if you drive or do
anything that requires you to be awake and alert.
This medication may be harmful to an unborn baby. Tell your doctor if you are
pregnant or plan to become pregnant during treatment. Mirapex may pass into breast
milk and could harm a nursing baby. Do not use this medication without telling your
doctor if you are breast-feeding a baby.
Mirapex may cause hallucinations (the sensation of hearing or seeing something
that is not there), most commonly among elderly people. Call your doctor if you have
hallucinations.
If You Miss A Dose
Take the missed dose as soon as you remember. If it is almost time for your next dose,
skip the missed dose and take the medicine at the next regularly scheduled time. Do
not take extra medicine to make up the missed dose.
Side Effects
Get emergency medical help if you have any of these signs of an allergic reaction:
- skin rash or hives
- difficulty breathing
- swelling of your face, lips, tongue, or throat
Stop taking Mirapex and call your doctor at once if you have any of these serious
side effects:
- extreme drowsiness, falling asleep suddenly, even after feeling alert
- hallucinations
- fever
- stiff muscles
- confusion
- sweating
- fast or uneven heartbeats
- nausea
- feeling light-headed
- fainting
- restless muscle movements in your eyes, tongue, jaw, or neck
Continue taking Mirapex if you have any of these less serious side effects:
- constipation
- upset stomach
- loss of appetite
- dry mouth
- trouble swallowing
- urinating more often than usual
- mild drowsiness or sleepiness
- sleep problems (insomnia)
- unusual dreams
- amnesia, forgetfulness
- thinking problems
- headache
- confusion
- weakness
- blurred vision
- joint pain, muscle weakness
- swelling in your hands or feet
- runny or stuffy nose
- weight loss
- impotence, loss of interest in sex, or trouble having an orgasm
Side effects other than those listed here may also occur. Talk to your doctor
about any side effect that seems unusual or that is especially bothersome.
Drug Interactions
Before taking Mirapex, tell your doctor if you are using any of the following drugs:
- amantadine (Symmetrel®)
- cimetidine (Tagamet®)
- diltiazem (Cardizem®, Cartia®, Dilacor®, Tiazac®)
- ranitidine (Zantac®)
- quinidine (Quinaglute®, Quinidex®)
- quinine(Qualaquin®)
- triamterine (Dyrenium®)
- verapamil (Calan®, Covera®, Isoptin®)
If you are using any of these drugs, you may not be able to use Mirapex, or you may
need dosage adjustments or special tests during treatment.
There may be other drugs not listed that can affect Mirapex. Tell your doctor about
all the prescription and over-the-counter medications you use. This includes vitamins,
minerals, herbal products, and drugs prescribed by other doctors. Do not start using a
new medication without telling your doctor.
I hope this article has been helpful. Next month our focus will be on Tramadol.
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Source:
* Drugs.com
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How to Cut Down on Holiday Spending
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Cutting down on holiday spending, doesn't have to mean cutting down on holiday fun. Here
are twelve ways to plan a fun and affordable holiday:
Create a Budget
A cheaper Christmas starts with a solid spending plan. Look over your finances, and
decide how much you can afford to spend on Christmas. Then, divide this amount among your
various Christmas expenses – gifts, food, decorations, etc.
Make a Gift List
Bring focus to your gift spending by creating a list of all the people you plan to shop
for. Then, set a spending limit for each person, and jot down gift ideas before heading
out to shop.
Trim Down Your Gift List
Have more people on your gift list than you can afford to buy for? Then, it's time to
give that list a trim. Look over your current list, and decide whom you have to shop for
and whom you don't. Remember: a shorter Christmas list is always better than adding debt
and stress to your life.
Start Early
Black Friday may be the official start to the Christmas shopping season, but it doesn't
have to be the start to yours. Start shopping for gifts as soon as you can afford to do
so, and you'll have more time to bargain shop and feel less pressure to buy at any price.
Shop Smart
Giving a nice gift doesn't have to mean spending a lot, so shop with your budget in mind:
Gift Ideas Under $5
-
Reusable Shopping Bags - Most grocery stores, and many big-box stores, now sell
reusable shopping bags for 99-cents a bag. Pick up five of them for the perfect eco-chic
gift.
-
A Restaurant.com Gift Certificate - Ordinarily giving someone a $25 restaurant
gift certificate means spending $25 on a restaurant gift certificate. However, that's not
the case when you shop through restaurant.com. Take advantage of one of their frequent
sales and you could net $25 certificates for as little as $2 each.
-
Seeds and Planting Supplies - Pick up a couple packets of seeds that are suitable
for a windowsill garden - chives, cilantro or basil, perhaps - some small pots and soil
for an inexpensive gift that will keep giving all year.
A Local Food Item - Every locale has its special foods - maybe it's a particular
salsa or a hand-crafted variety of chocolates, or oranges. Identify what that special
item is in your area and you've got a great gift at a great price.
A Good Pair of Socks - Give the gift of snuggly warmth in the form of a nice,
thick pair of socks. For the best deal, buy a multi-pack; and divide it among several
people on your gift list.
Gift Ideas Under $10
Grocery Bag Holder - Plastic grocery bags have a way of taking over a house.
Squash the problem for someone on your Christmas list by buying a grocery bag holder.
A Gift Certificate for a Used Book Store - Know a lover of books? Then, help them
indulge their passion with a gift certificate to a used bookstore. They're sure to have
fun making their selections, and $10 is sure to go a lot further than it would at a new
bookstore.
A Refillable Pen - With all of the cheap pens on the market today, a good quality
pen can be a real treat. Choose one that's refillable and the recipient will be able to
enjoy your gift now and many Christmases from now.
Nuts - Cashews, macadamia nuts and even walnuts can be a splurge when you're on a
budget, so surprise that special someone on your list with a package of premium nuts.
A Gift Certificate for Photo Processing - A lot of pictures get taken during the
holidays, which translates into a lot of pictures to have developed. Help defray the cost
by giving someone on your list a gift certificate for photo processing.
Blank Greeting Cards - Select a pretty package of blank greeting cards for someone
on your list, and she'll always have some on hand when a card-worthy occasion comes up.
Shop Second-Hand
There's no rule that says gifts have to be bought new. Scour thrift stores, yard sales,
flea markets and other second-hand sources for gift-worthy items at prices well below
retail. Just a few possibilities: unburned candles, antiques, collectibles, vintage
jewelry and books.
Make It Yourself
Homemade gifts are every bit as nice as store-bought gifts, and sometimes nicer. Put your
creativity to work, and knock off everyone on your gift list.
Skip the Christmas Cards
Christmas cards are nice, but the cost can really add up. First you've got to buy the
cards; then, you've got to pay for all the postage to mail them. Double ouch! To make
your Christmas budget go further, consider sending your cards online!
Skip the Pricey Gift Wrap
Gift wrap has gotten so expensive - sometimes adding as much as $5 to the cost of a
present. Wow! Fortunately, it only takes a bit of creativity to avoid this expense
entirely:
- Oatmeal Containers
- Recycled Gift Bags
- Kids' Artwork
- Kraft Paper
- Fabric
Throw an Affordable Holiday Party
Holiday parties are a lot of fun, but they can get expensive in a hurry. Spend some time
planning a party that you can afford, and then enjoy your get-together guilt-free.
Try some of these holiday party themes:
- Dessert Party
- Fondue Party
- Tree-Trimming Party
- Potluck
- Wine and Cheese Party
Donate for Less
The holiday season is a popular time to give to charity, but that doesn't mean that you
should give more than you can afford. Get creative with your giving, and help others
without hurting yourself. Giving to charity doesn't have to mean giving money. Learn how
you can make a difference by donating your old eyeglasses, cellphones, computers and ink
cartridges to charitable organizations.
Decorate on the Cheap
Trees, lights and baubles galore - find ways to stretch those decorating dollars and you
can have it all. Use what you already have, swap decorations with friends, scour thrift
stores and yard sales, make something new with your own hands - if you can envision it,
you can make it happen!
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Source:
* Erin Huffstetler, How to Cut Down on Holiday Spending, Your Guide to a More Affordable
Christmas, About.com, Accessed Nov. 7, 2009.
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Blood Test for Fibromyalgia?
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The Anti-Polymer Antibody Assay, or APA Assay, detects an abnormal immune system response
in most fibromyalgia patients. In one preclinical study, the titers of the antibodies
detected correlated with nine separate clinical measures of fibromyalgia severity,
including:
- fatigue
- stiffness
- anxiety
- depression
The APA Assay appears to be the first practical laboratory test for fibromyalgia, and the
correlation between antibody titers and symptomatology appears to provide the first
direct evidence that fibromyalgia is in fact a unique disease which is based on a
physiological, and not a psychological, pathology. Choose from the links below:
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INTRODUCTION
The APA Assay has been shown in two previously published studies to detect anti-polymer
antibodies in the blood of a large percentage of patients with fibromyalgia and
fibromyalgia-like symptoms. New data presented in September 2001 at the International
Myopain Society's 5th World Conference on Myofascial Pain and Fibromyalgia revealed
statistically significant relationships between the titers of these antibodies and nine
different clinical measures of fibromyalgia severity.
The data presented in September 2001 was obtained from a study of well-characterized
fibromyalgia patients which was conducted at the University of Texas Health Science
Center in San Antonio (the "San Antonio study"). The San Antonio investigators were
Yang-Ming Xiao, M.D., Ph.D., I. Jon Russell, M.D., Ph.D., and Joel E. Michalek, Ph.D. Dr.
Russell is one of several world-recognized fibromyalgia experts, and Dr. Michalek is the
principal investigator for the Air Force Ranch Hand Study, which is the largest and
longest-running epidemiological study in the United States. Manuscripts describing the
San Antonio study are now being prepared for publication.
The APA Assay appears to be the first practical blood test for fibromyalgia. Data from
the San Antonio study is now being used to prepare clinical testing protocols to propose
to the U.S. Food and Drug Administration as part of the process of winning FDA approval
of the APA Assay as a diagnostic test for fibromyalgia. The published results suggest \
that the APA Assay may objectively contribute to distinguishing between patients with
fibromyalgia and patients with connective tissue diseases such as systemic lupus
erythematosus, systemic sclerosis, Sjögren's syndrome, rheumatoid arthritis, and
poly/dermatomyosis.
In part because of the historical absence of laboratory evidence to the contrary, many
physicians currently feel that fibromyalgia is not a physically-based illness. These
physicians instead believe that fibromyalgia is either a psychological disorder or that
fibromyalgia symptoms are the product of some other disease which has not yet been
correctly diagnosed. By directly associating immune response with symptomatology, the APA
Assay demonstrates that fibromyalgia is in fact a unique physical disorder, or, in lay
terminology, "a real disease."
The data from the San Antonio study suggests that anti-polymer antibodies might play a
direct role in the fibromyalgia disease process. Data from this study as well as the two
previously published studies indicate that approximately two-thirds of primary
fibromyalgia patients test positive for anti-polymer antibodies. Primary fibromyalgia
syndrome is believed by many researchers to have more than one cause, and it is entirely
possible that fibromyalgia patients who test positive for anti-polymer antibodies
represent a very large and previously unrecognized group of fibromyalgia patients whose
disease is the result of one particular cause.
Drugs which modulate a patient's immune response are frequently prescribed by physicians
to help alleviate symptoms in autoimmune disease patients. The APA Assay shows that an
abnormal immune response is present in most fibromyalgia patients, and physicians could
choose to interpret this finding as an indication that such drugs might also be useful in
treating fibromyalgia patients.
The titers of the antibodies detected by the APA Assay correlate with nine measures of
severity of symptoms of fibromyalgia. In contrast, other immunological test results
rarely show any correlation at all between antibody titers and symptoms in any rheumatic
disease. Because such correlations can in fact be explored by using the APA Assay, the
Assay may also prove to be a valuable aid to physicians who wish to monitor flare and
other on-going conditions in their fibromyalgia patients.
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THE RESEARCH STUDIES
An article published in the February 1999 issue of The Journal of Rheumatology entitled
"Anti-Polymer Antibody Reactivity in a Subset of Patients with Fibromyalgia Correlates
with Severity" shows that 47% of patients with fibromyalgia and 61% of patients with
severe symptoms of fibromyalgia were seroreactive on the APA Assay. The pain thresholds,
as determined by dolorimeter scores, for seropositive patients in the study were
significantly lower than those of seronegative patients, demonstrating that APA Assay
reactivity correlates with severity of symptoms. No other reported laboratory measure has
been found to correlate with severity of symptoms in patients with fibromyalgia.
An earlier study of a different group of patients with fibromyalgia-like symptoms showed
similar results. In an article published in the February 15, 1997 issue of The Lancet
entitled "Use of Anti-Polymer Antibody in Recipients of Silicone Breast Implants," 68% of
patients with advanced fibromyalgia-like symptoms exhibited APA Assay seroreactivity. The
results of these two studies suggest that the presence of anti-polymer antibodies may
serve as a laboratory marker for an illness that is the same or similar in both groups of
patients. The APA Assay was also shown to be a very specific test, with a level of APA
reactivity among patients known not to have any fibromyalgia symptoms of approximately 3%.
Both articles also present results showing that APA reactivity is markedly lower
(p< 0.05) in patients with diffuse connective tissue diseases than in patients with
fibromyalgia or fibromyalgia-like symptoms alone. Such connective tissue diseases include
rheumatoid arthritis, systemic lupus erythematosus and systemic sclerosis/scleroderma,
and it can be difficult, particularly in severe cases of fibromyalgia, to differentiate
fibromyalgia from these diseases.
The San Antonio study data presented in July 2004 at the Sixth World Conference on
Myofascial Pain and Fibromyalgia(3) is entitled "Anti-Polymer Antibodies Identify a Large
Subgroup of Fibromyalgia Syndrome Patients." The conclusions recited in the abstract are
as follows:
The APA Assay kit was highly reliable. Significantly higher anti-polymer antibody values
were found in primary fibromyalgia syndrome patients than in healthy normal controls.
These findings suggest that anti-polymer antibody testing may have identified a
previously unrecognized subgroup of primary fibromyalgia syndrome patients. It seems
reasonable to propose that anti-polymer antibodies may be important to the pathogenesis
of that primary fibromyalgia subgroup.
In the San Antonio study, statistically significant correlations (p ≤ 0.05) were found
between the optical densities of the ELISA test results (i.e., the antibody titers) and
the following nine clinical measures of fibromyalgia severity:
|
|
Measure |
Description |
Scale |
| STIFF |
Degree of stiffness severity
(VAS*) |
0 - 10 |
| FELTINAM |
Feeling from "good" to "bad" in
the morning (VAS*) |
0 - 10 |
| HOWTIRED |
Degree of fatigue severity (VAS*) |
0 - 10 |
| LIMITACT |
Symptoms-limited-activity days
experienced during the last week |
0 - 7 |
| HEADACHE |
Days in which headache was
experienced during the last week |
0 - 7 |
| ANXIOUS |
Level of anxiety (VAS*) |
0 - 10 |
| DEPRESS |
Level of depression severity
(VAS*) |
0 - 10 |
| ZUNG |
The Zung depression index |
0 - 100 |
| CESD |
The Center for Epidemiological
Studies depression index
|
0 - 60 |
|
* As marked by the patient on a visual analog scale |
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In addition, the correlation between antibody titers and a tenth clinical measure of
fibromyalgia severity approached statistical significance at p = 0.06. This tenth measure
was ABDMPAIN, which represents the number of days in which abdominal pain was experienced
during the last week(3),(4).
Anti-polymer antibodies have also been shown to belong to the IgG2 subclass of human
immunoglobulins, a subclass of IgG composed of antibodies that typically recognize
non-peptide antigens(5).
In the San Antonio study, APA seroreactivity was found in approximately 26% of the
population of relatively healthy normal controls. Subsequent analysis revealed that the
APA-positive members of the control group exhibited a statistically-significant
(p ≤ 0.05) increase in pain sensitivity as measured by dolorimeter, which suggests that
anti-polymer antibodies are present in individuals with mild manifestations of
fibromyalgia. A high APA reactivity rate among individuals who consider themselves to be
healthy corresponds with the high rate of subclinical fibromyalgia found in studies by
Clauw and by Wolfe et al, which approached 20% of the adult female population in the
United States.
Anti-polymer antibodies were discovered at Tulane University Medical School, and the APA
Assay and has been licensed to Autoimmune Technologies, LLC of New Orleans. The APA Assay
is currently covered by U.S., European and Australian patents, and other patents are
pending.
The APA Assay is now being manufactured in commercial ELISA kit form. Because the APA
Test Kit is undergoing FDA clinical trials it cannot be distributed in the U.S., though
it is available in other countries. Individual tests for anti-polymer antibodies can be
conducted in nitrocellulose strip format by Autoimmune Technologies as a service to
interested physicians and researchers for investigational use.
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FREQUENTLY ASKED QUESTIONS (FAQ's)
Is the APA Assay the first laboratory test for fibromyalgia?
Yes. Until now there has not been a lab test that is specific for fibromyalgia.
Research studies to date have shown that the APA Assay can identify between one-half and
two-thirds of fibromyalgia patients tested.
What does the APA Assay detect?
The APA (Anti-Polymer Antibody) Assay detects IgG anti-polymer antibodies in human
serum.
What are anti-polymer antibodies?
Researchers are still in the process of trying to fully understand the nature of
these antibodies. However, published studies have recently reported that fibromyalgia
patients with a higher level of anti-polymer antibodies in their blood have more severe
fibromyalgia symptoms than patients with lower antibody levels. This makes the APA Assay
a valuable fibromyalgia test even though the circumstances surrounding antibody
production are not yet completely understood.
Why do anti-polymer antibodies occur in fibromyalgia patients?
Why anti-polymer antibodies occur is also not fully understood yet. However, this
is not unusual, because it is also not fully understood why other abnormal antibodies
occur in diseases like rheumatoid arthritis (RA) and systemic lupus erythematosus (SLE).
Nevertheless, detecting the presence of the other antibodies in RA and SLE patients is
useful in aiding in the diagnosis, and sometimes the treatment, of those illnesses.
If my physician has already told me that I have fibromyalgia, could this test be
of any use for me?
Yes it could. The test could objectively confirm your physician's diagnosis, and
it might also help in determining your treatment. A positive result on the APA Assay
means that a fibromyalgia patient's immune system is producing anti-polymer antibodies.
This is the first evidence that an immune response is associated with fibromyalgia as it
is with rheumatoid arthritis and lupus. Immune-modulating drugs have not been thought to
be appropriate for fibromyalgia in the past, but now the APA Assay could lend
considerable support to a physician's decision to prescribe these drugs for a
fibromyalgia patient.
Are there other examples of lab tests for factors that are not completely
understood?
Yes. One good example is the anti-nuclear antibody test, or ANA test, which is the
most commonly used autoimmune screening test. Physicians order the ANA test approximately
25 million times per year worldwide and use the results to help diagnose and monitor
their patients, yet researchers still don't fully understand why anti-nuclear antibodies
are produced or what their significance is.
What about using other lab tests for fibromyalgia patients?
There are dozens of lab tests that physicians can order when they are in the
process of examining a patient suspected of having fibromyalgia. However, these tests are
not specific for fibromyalgia and they are usually ordered to help rule out other immune
disorders. Many fibromyalgia patients have completely normal results on all of these
other tests.
Is a lab test useful even if it doesn't detect something in every patient?
Yes, both positive and negative test results can supply valuable information, and
many diagnostic tests don't operate in the 95% to 100% detection range. For example, the
discovery of proteins called rheumatoid factors helped convince physicians that
rheumatoid arthritis was a real disease instead of a psychological disorder, yet only
about 70% of patients who receive a diagnosis of rheumatoid arthritis test positive for
rheumatoid factors.
If I don't have the antibodies that the APA Assay detects, does that mean I
don't have fibromyalgia?
No, people without anti-polymer antibodies can still have fibromyalgia.
In research studies to date, up to two thirds of fibromyalgia patients tested positive on
the APA Assay but the other fibromyalgia patients did not. This and other research
indicates that there are several distinct subgroups of fibromyalgia patients, and
fibromyalgia patients without anti-polymer antibodies probably belong to one of the
smaller patient subgroups.
Has the APA Assay been approved by the U.S. Food and Drug Administration for use
as a diagnostic test?
No, but the test is undergoing the clinical trials necessary to support a
regulatory filing for FDA approval. For diagnostic tests, the FDA requires that tests be
produced in kit form, and the kit is what the FDA approves and regulates. An APA Assay
kit, in the Enzyme Linked ImmunoSorbent Assay (ELISA) microtiter plate format, has been
developed for Autoimmune Technologies by Corgenix, Inc., and this kit is now being used
in the U.S. clinical trials. The data obtained from these trials will then be submitted
to the FDA in what is called a Pre-Market Approval, or PMA, application.
How long do clinical trials take?
Unlike drug trials, clinical trials of a non-invasive blood test like the APA
Assay can be done Questionuickly, and the clinical trials of the APA ELISA Kit will
probably take between six and nine months to complete. After that, the PMA application to
the FDA will be submitted. If the FDA decides to approve the PMA, approval could come
within six months to a year after the date of submission.
Can I have my blood tested for anti-polymer antibodies?
The APA ELISA Kit is designed to be distributed to the clinical labs which run the
test when it is ordered by a physician. FDA regulations prohibit the use of a test kit in
the U.S. while it is undergoing clinical trials and approval, but the kit is available to
labs in other countries through the Corgenix international sales office in Peterborough,
UK. For more information, contact:
Corgenix UK Ltd.
75 Broadway
Peterborough
Cambridgeshire, UK PE1 1SY
www.corgenix.co.uk
Telephone: +(44) 01733 296800
Fax: +(44) 01733 296809
Does my physician know about this test?
Answer: Your physician may not know about the APA Assay, and you may want to give
him or her a printed copy of the APA Assay Science Summary.
Click here to print out a copy of Science Summary of The Anti-Polymer
Antibody Assay (APA Assay) and Fibromyalgia Syndrome" (PDF format).
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Sources:
- Wilson, R. B., O. S. Gluck, J. R. P. Tesser, J. C. Rice, A. Meyer, and A. J. Bridges.
Antipolymer Antibody Reactivity in a Subset of Patients with Fibromyalgia Correlates with
Severity. Journal of Rheumatology 1999;26:402-407.
- Tenenbaum, S. A., J. C. Rice, L. R. Espinoza, M. L. Cuéllar, D. R. Plymale, D. M.
Sander, L. L. Williamson, A. M. Haislip, O. S. Gluck, J. R. Tesser, L. Nogy, K. M.
Stribrny, J. A. Bevan, and R. F. Garry. Use of Antipolymer Antibody Assay in Recipients
of Silicone Breast Implants. The Lancet 1997;349:449-454.
- Xiao Y. M., Russell I. J., Michalek, J. E. and Wilson, R.B. Anti-Polymer Antibodies
Identify a Large Subgroup of Fibromyalgia Syndrome Patients. Presentation; Myopain 2004.
- Xiao Y. M., Russell I. J., Michalek, J. E. and Wilson, R.B. Journal of
Musculoskeletal Pain 2001, Volume 9, Supplement Number 5;106.
- Wilson, R.B. Characterization of Anti-Polymer Antibodies Present in the Serum of
Patients with Fibromyalgia Syndrome. Journal of Musculoskeletal Pain 2001, Volume 9,
Supplement Number 5;105.
- Clauw, D. J. The Pathogenesis of Pain and Fatigue Syndromes, with Special Reference
to Fibromyalgia. Med Hypothesis 1995; 44:369-378.
- Wolfe, F., K. Ross, J. Anderson, I. J. Russell, and L. Hebert. The Prevalence and
Characteristics of Fibromyalgia in the General Population. Arthritis Rheum 1995;38:19-28.
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If you're starting to dread the holidays you're not alone. Even healthy people with
plenty of energy can feel pulled in all directions and inadequate at this time of year.
So it's important to set down holiday survival rules and adhere to them.
Start A List
Get a paper and pencil and start a list that's going to include taking care of yourself.
Is this really a good time to catch up on housecleaning? Are your guests really going to
look behind your couch?
Be Realistic
Look at your to-do list and cross off half of the things you've written down. Force
yourself to do this no matter how many times you have to reread it and think about it. If
you start now you can take time with this task. Last year I only took out half my holiday
decorations. I simply cut that task right in half. No one even noticed. If you celebrate
Christmas, buy a smaller tree than you usually do. Put it on a box so it'll look taller.
Pre-lit trees are great. Net lights are a great decorating tip-they can be draped over
many things and look beautiful. Wire ribbon tied around plants, banisters, pillows and
lampshades is another easy quick (and inexpensive) festive touch. Remember that the most
important gift you can give to those who love you is not to be sick and stressed. Do you
really need to cook the whole meal when the goal is to enjoy family time? Buy some items
or allow other people to contribute. This will leave you with only a signature dish or
two.
Don't Be Afraid To Delagate!
Involve other family members and they'll respond especially if they get to help make the
decisions. Don't be defensive. Say "What I'd like is a more relaxed holiday this year."
It's hard to imagine anyone arguing with that! Offer choices this way: "we need to pick
one, do you want this or that?" rather than just asking for input.
Stick Within Your Budget
Especially in these difficult financial times,sticking to a budget can help to relieve a
lot of stress. Make it clear upfront to family and friends that you're going to be more
frugal this year. You can make a deal with some of your adult friends to limit what you
will spend or skip gifts completely.
Buy Online or From Catalogs
Be sure to only buy from stores where it's easy to return items. Some retailers include
return packaging so you can simply put things in a box and send it off. Make sure there
is a money-back guarantee policy. In this day and age there is absolutely no need to set
foot in crowded stores. Why put yourself though the stress of crowds, noise, parking, and
waiting in lines? If you must go to the mall, look around for a small one that will be
less crowded. Go at times when others don't. Get in and get out. Have a plan BEFORE you
go out. Most malls have websites with maps. Buy gift bags at dollar stores to cut
wrapping.
Avoid Doing Too Much
Quit before you are exhausted. Leave parties before you are tired. Set a time to leave
and do it, no matter how you feel. You may not sense how tired you are if you are having
a good time.
Dress For Comfort
Pay more attention to what you feel comfortable wearing than to what you think others
will wear. If you're comfortable, you will feel more attractive than if you are squeezed
into clothes that itch or your shoes hurt. Dress in layers so you can be comfortable at
different temperatures. A pretty shawl can be your best accessory.
Don't Leave Home In A Rush
Be sure you have the medications you need. Set up your purse the day before and recheck
it when you are calm and not hurried.
Make Healthy Choices
Make healthy decisions about food and drink and stick to them. You'll feel better before,
during and after events if you do. Don't allow yourself to be tempted. Be firm but
polite. Don't offer an explanation, but use a firm, polite "No thank-you." Continue with
your healthy habits: do exercise, rest and stretching. Don't scrimp on things that help
you cope like massage and physical therapy.
Accept Friends and Family For Who They Are
Draw a line and don't discuss your health or allow yourself to be drawn into debates. Be
gracious when someone offers you medical advice from a neighbor's cousin. Change the
subject. (Compliments can be a great diversion.) When you mark your calendar jot down
concerns about other guests. You can be prepared and resolved. If you have a friend
attending explain your fears and ask for help.
Schedule Your Down Time
Schedule down time after busy days. Mark your calendar and don't give up your time. An
appointment with yourself should be respected with the same conviction as one made with
another person.
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Source:
* READY OR NOT….HERE THEY COME!, THE FIBROMYALGIA TREATMENT FORUM, Accessed Nov. 19, 2009.
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Christmas is the Christian celebration of the birth of Jesus Christ, the Son of God, and
the savior of all people. With the birth of Christ, Christianity essentially begins;
thus, Christmas also celebrates the beginning of Christianity.
Though Christmas is normally celebrated on the 25th of December, strong evidence suggests
that Jesus may have in fact been born in the spring. Though many Christians date
Christ's birth as the end of the "Before Christ" or BC era, most believe Christ's birth
can actually be dated to 4 BC. This is a bit ironic, since the Christian era is thought
to begin with the birth of Christ, but actually begins later.
Sextus Julius Africanus, a third century Christian missionary, is believed to have
first espoused the theory of Christ's birth as December 25th. This worked well when the
Romans later largely converted to Christianity because Christmas could be tied to pagan
winter rituals. Historical records suggest some forms of Christmas celebrations dating
back to the early 4th century CE. Some, however, argued that Christmas should not
be celebrated as a feast date, because of the divine nature of Christ. This position is
still held by some Christian groups like the Jehovah's Witnesses.
Most people see Jolly Old England as the source for many modern Christmas traditions,
however, England actually banned celebration of Christmas from 1647-1660 in an effort to
free the holiday of what was viewed as its pagan trappings and the excess and corruption
of the Roman Catholic Church. This was not a popular decision and England reinstated
Christmas as a celebratory holiday.
Charles Dickens inspired many of the traditions we now regularly practice as part of
Christmas celebrations. His phenomenal classic "The Christmas Carol" published
in 1843, changed Christmas to a moderate, family oriented holiday. This differed from
past celebrations which often verged on the anti-Christian, and which involved
pursuing hedonism with graceless abandon.
Clement Clarke Moore's 1822 poem "A Visit from Saint Nicholas" firmly established
the connection between Christmas and Santa Claus. Actually many Christmas traditions
are based in Germanic pagan rituals predating Christianity. Many consider Thor to be
a frontrunner as an early Santa Claus figure, and the Christmas tree was once a
sacrificial tree to the gods, hung brightly with dead animals.
Today, some people feel that Christmas has been corrupted by the commercialism with which
it has come to be associated. Still, many Christians feel that even a Christmas with
the overt trappings of commercialization has a special feeling that can only be
attributed to faith. It can be a time to renew one's faith, or merely come closer to the
birth of a religion which sustains many. In touching on Christ's message, even small
children may begin to understand the sacred nature of Christmas to Christians.
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Source:
* Christmas, Wikipedia, the free encyclopedia, wikipedia.org.
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Boxing Day is celebrated on December 26th. It is a
statutory holiday in the federal jurisdiction and in Ontario. If it falls on a Saturday
or a Sunday, the working day immediately preceding or following Boxing Day is considered
a legal holiday.
Boxing Day, also known as the Feast of St. Stephen (after the first Christian martyr),
originated in England in the middle of the nineteenth century under Queen Victoria. It
originated as a holiday for members of the merchant class to give boxes containing food
and fruit, clothing, and/or money to trades people and servants. The gifts were an
expression of gratitude similar to the bonuses many employers offer their employees
today. These gifts, usually given in boxes, gave the holiday it's name, "Boxing Day".
Also related to the origin of Boxing Day is the tradition of opening the alms boxes
placed in churches over the Christmas season. The contents of these boxes were
distributed amongst the poor, by the clergy, the day after Christmas.
Today, Boxing Day is a holiday in the United Kingdom, Canada, and many other Commonwealth
nations. It is a time for family and friends to gather with lots of food and fun. Outdoor
sports such as soccer, horse racing and hunting are popular on this holiday. Retailers
offer huge savings on many items on this day, making it the biggest shopping day of the
year in Canada.
Throughout the Christmas season, many organizations keep the original tradition of Boxing
Day alive by donating their time, energy, and money to fill the Food Bank and provide
gifts for the poor.
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Source:
* Boxing Day, Wikipedia, the free encyclopedia, wikipedia.org.
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Sensory, Adrenergic, and Immune Genes in CFS Patients
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Abstract
Chronic fatigue syndrome (CFS) is characterized by debilitating fatigue, often
accompanied by widespread muscle pain that meets criteria for fibromyalgia (FM). Symptoms
become markedly worse after exercise.
Previous studies implicated dysregulation of the sympathetic nervous system (SNS), and
immune system (IS) in CFS and FM. We recently demonstrated that acid sensing ion channel
(probably ASIC3), purinergic type 2X receptors (probably P2X4 and P2X5) and the transient
receptor potential vanilloid type 1 (TRPV1) are molecular receptors in mouse sensory
neurons detecting metabolites that cause acute muscle pain and possibly muscle fatigue.
These molecular receptors are found on human leukocytes along with SNS and IS genes.
Real-time, quantitative PCR showed that 19 CFS patients had lower expression of β-2
adrenergic receptors but otherwise did not differ from 16 control subjects before
exercise.
After a sustained moderate exercise test, CFS patients showed greater increases than
control subjects in gene expression for metabolite detecting receptors ASIC3, P2X4, and
P2X5, for SNS receptors α-2A, β-1, β-2, and COMT and IS genes for IL10 and TLR4 lasting
from 0.5 to 48 hours (P < .05).
These increases were also seen in the CFS subgroup with comorbid FM and were highly
correlated with symptoms of physical fatigue, mental fatigue, and pain. These new
findings suggest dysregulation of metabolite detecting receptors as well as SNS and IS in
CFS and CFS-FM.
Perspective
Muscle fatigue and pain are major symptoms of CFS. After moderate exercise, CFS and
CFS-FM patients show enhanced gene expression for receptors detecting muscle metabolites
and for SNS and IS, which correlate with these symptoms. These findings suggest possible
new causes, points for intervention, and objective biomarkers for these disorders.
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Source:
* Alan R. Light, Andrea T. White, Ronald W. Hughen, Kathleen C. Light, Moderate Exercise
Increases Expression for Sensory, Adrenergic, and Immune Genes in Chronic Fatigue
Syndrome Patients But Not in Normal Subjects, Received 30 March 2009; received in revised
form 10 May 2009; accepted 1 June 2009. published online 03 August 2009, Journal of
Pain: 10.1016/j.jpain.2009.06.003.
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Kwanzaa is an African American and Pan-African holiday which celebrates family, community
and culture. Celebrated from 26 December thru 1 January, its origins are in the first
harvest celebrations of Africa from which it takes its name. The name Kwanzaa is derived
from the phrase "matunda ya kwanza" which means "first fruits" in Swahili, a widely
spoken African language.
The first-fruits celebrations are recorded in African history as far back as ancient
Egypt and Nubia and appear in ancient and modern times in other classical African
civilizations such as Ashantiland and Yorubaland. These celebrations are also found in
ancient and modern times among societies as large as empires (the Zulu or kingdoms
(Swaziland) or smaller societies and groups like the Matabele, Thonga and Lovedu, all of
southeastern Africa.
Kwanzaa was designed to be an ingathering to strengthen community and reaffirm common
identity, purpose and direction as a people and a world community. Kwanzaa
was also created to introduce and reinforce the Nguzo Saba (the Seven Principles.) These
seven communitarian African values are:
- Umoja (Unity)
- Kujichagulia (Self-Determination)
- Ujima (Collective Work and Responsibility)
- Ujamaa (Cooperative Economics)
- Nia (Purpose)
- Kuumba (Creativity)
- Imani (Faith)
It is important to note Kwanzaa is a cultural holiday, not a religious one,
thus available to and practiced by Africans of all religious faiths who come
together based on the rich, ancient and varied common ground of their Africanness.
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Source:
* Kwanzaa, Wikipedia, the free encyclopedia, wikipedia.org.
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Two men are new arrivals at the Pearly Gates and are comparing stories on how they died.
1st man: "I froze to death."
2nd man: "How horrible!"
1st man: "It wasn't so bad. After I quit shaking from the cold, I began
to get warm and sleepy, and finally died a peaceful death. What about
you?"
2nd man: "I died of a massive heart attack. I suspected that my wife
was cheating, so I came home early to catch her in the act. But
instead, I found her all by herself in the den watching TV."
1st man: "So, what happened?"
2nd man: "I was so sure there was a man there somewhere that I started
running all over the house looking. I ran up into the attic and
searched, and down into the basement. Then I went through every closet
and checked under all the beds. I kept this up until I had looked
everywhere, and finally I became so exhausted that I just keeled over
with a heart attack and died!"
1st man: "Too bad you didn't look in the freezer. We'd both still be
alive."
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Source:
* email sent from reader.
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Chronic Fatigue Syndrome & Mitochondrial Dysfunction
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Mitochondrial dysfunction is getting more and more attention as an underlying mechanism
of chronic fatigue syndrome. Dr. Sarah Myhill, a UK doctor who was an early proponent of
this theory and has a treatment protocol based on it, has just published a paper on
mitochondrial dysfunction that even points to a possible diagnostic test.
What are Mitochondria?
Mitochondria are specialized parts of cells that, among other things, convert nutrients
into energy. That energy enables your cells to carry out their many jobs in your body --
or, if you have mitochondrial dysfunction, that energy isn't produced, thereby preventing
your cells from doing their jobs properly.
Proposed Diagnostic Test
The test discussed in this paper is the "ATP profile." It's a blood test that looks at
several levels, including ATP (adenosine triphosphate), which is the body's primary form
of energy, and ADP (adenosine diphosphate), which mitochondria use to make ATP. Myhill's
paper says the results were clear - the more severe the dysfunction, the more severe the
symptoms. It also says the test can differentiate between people who are fatigued because
of stress/psychological factors and those who have cellular dysfunction.
That all sounds pretty exciting, but this isn't a test you can rush out and take right
now (not that you probably do much rushing!) This research is in the early stages and
needs to be confirmed, re-confirmed, and re-re-confirmed before it'll be accepted by the
medical community. Best-case scenario, it'll be years before this test is widely
available. However, that doesn't mean we can't use the information to our benefit right
now.
Treating Mitochondrial Dysfunction
Dr. Myhill's recommendations for treating mitochondrial dysfunction is a set of
supplements, many of which are familiar to most of us:
- CoQ10
- L-Carnitine
- D-Ribose
- Magnesium
- Niacinamide (Vitamin B3)
Some of the dosages she recommends are outside of the normal range, so please talk to
your doctor and pharmacist and know any risks associated with high dosages before you
start this (or any other) treatment regimen.
Other doctors recommend vitamin B2 (riboflavin) for correcting mitochondrial problems,
and physical therapy for improving range of motion and dexterity.
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Source:
* Adrienne Dellwo, Chronic Fatigue Syndrome & Mitochondrial Dysfunction, Fibromyalgia &
CFS Blog, About.com.
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Clinical Aspects and Management of Fibromyalgia
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Introduction
Fibromyalgia syndrome (FM) has been referred to as a medically unexplained syndrome; a
rheumatological entity described in rheumatology textbooks and taught to all training
rheumatologists, and lately with newer development in research particularly in
neurophysiology, as a central sensitivity syndrome. Due to its lack of objective findings
on physical examination, laboratory and imaging modalities, FM was once dismissed by
physicians and the public as a psychological disorder. It was thought to be a
society-driven disorder, whereby expressions of the distressed patients problems are
made into a "disease", hence becoming more legitimate for equal social support and
sympathy from the medical community. Whether this is actual social or economic
medicalisations, there are real patients suffering real symptoms.
Management of Fibromyalgia
Numerous literatures are available on the management of fibromyalgia. Most FM patients
have been evaluated by different specialists and undergone multiple tests. The approach
is to establish a correct diagnosis, to exclude differentials and to explain the
implications of the diagnosis to the patients. The goals of therapy are to improve
symptoms, function and emotional well-beings. Empathetic listening and acknowledgment
that the patient is indeed experiencing pain would go a long way to validate the
patient's illness and establish rapport for further treatment. Prior to prescribing any
form of treatment, it is imperative to assess any possible causal or perpetuating
factors, including attention to psychological and sociocultural factors. Concomitant
treatment of any possible nociceptive pain from an apparent pathology is important, for
example, treating the pain from an inflamed bursitis or degenerative spondylosis.
Excessive investigations or testings if not indicated should be discouraged. Physicians
are also reminded to avoid comments such as "It's all in your mind" or "I cannot find
anything wrong with you". Besides management of clinically relevant symptoms such as
fatigue, depression, rigidity and sleep disorders; physical and emotional stress may
aggravate FM and needs to identified and treated appropriately. Evidence has shown that
multi-disciplinary rehabilitation helps at least in the short term but effort needed to
maintain long-term benefits.
Pharmacological Treatment
A range of medical therapeutics, such as anti-inflammatory drugs, opioids, muscle
relaxants, antidepressants, sedatives and antiepileptics, have been used to treat FM.
With newer understanding of the neurophysiology of the FM pointing to a central pain
processing, research into drugs has intensified. This led to drugs being approved by the
United States Food and Drug Adminstration (FDA). In June 2007, pregabalin became the
first treatment approved by the FDA for the treatment of FM. Currently there are 3
FDA-approved drugs for FM. They are Pregabalin (Lyrica; Pfizer, Inc), Duloxetine
(Cymbalta; Eli Lily and Company) and Milnacipran (Savella; Forest Laboratories and
Cypress Bioscience).
Market survey showed the most frequent drugs used for treatment of FM is non-steroidal
anti-inflammatory drugs (NSAIDS) and since FM is largely devoid of inflammation, it is of
little wonder that these treatment failed. Alpha-2-delta ligands such as gabapentin and
pregabalin were used in the treatment of many pain conditions such as painful diabetic
neuropathy and postherpetic neuralgia. As a α₂δ calcium-channel antagonist
that acts by limiting the neuronal release of excitatory neurotransmitters, it can
decrease pain, decrease sleep latency and modify sleep architecture by improving
slow-wave sleep.
Pregabalin was approved by the FDA for fibromyalgia after demonstrating efficacy in 3
published trials. Generally starting at lower doses, it should reach doses such as 600 mg
daily. Most patients who discontinue pregabalin do so because of somnolence and dizziness
especially with higher doses. However, a meta-analysis showed pregabalin at 150 mg daily
was generally ineffective hence higher doses (such as 300 mg, 450 mg or 600 mg) were
required. Gabapentin with the same mechanism of action has also been effective in the
treatment of FM. Anti-depressants such as tricyclic anti-depressants (TCA), selective
serotonin reuptake inhibitors (SSRIs) such as fluoxetine, citalopram and paroxetine as
well as dual receptor inhibitors serotonin-norepinephrine reuptake inhibitors (SNRIs)
have been found to be helpful in relieving symptoms of fibromyalgia.
However, it was the SNRIs which provide more benefit as compared to pure serotonergic
drugs. Initial trials with the first available SNRI, venlafaxine, showed conflicting
results in the management of FM. In June 2008, another SNRI duloxetine was approved by
the FDA for the management of FM. Duloxetine was previously approved for the treatment of
peripheral neuropathic pain, depression and generalised anxiety disorder. This new
approval was based on data from 2 pivotal doubleblind, fixed-dose, randomised, phase-3
clinical trials of 12 weeks' duration. A subsequent 6-month multi-centre, randomised,
double-blind placebo-controlled trial showed reduction in pain severity and global
assessments at 3 and 6 months, irrespective of depression status. The recommended dose of
duloxetine is 60 mg once daily and no additional benefit was observed in patients
receiving 120 mg once daily. Treatment should be initiated at 30 mg once daily for 1 week
to allow patients to adjust to the medication before increasing to 60 mg once daily
dosing. Improvement in pain can be felt as early as the first week and this benefit
persisted throughout the study period. The common side effects of duloxetine were:
- nausea
- dry mouth
- constipation
- decreased appetite
- somnolence (or "drowsiness")
- hyperhidrosis (condition characterized by abnormally increased perspiration)
- agitation
Another SNRI, milnacipran, was approved in January 2009 for the management of
fibromyalgia after its efficacy was established in 2 pivotal US phase 3 trials.
Milnacipran was found to have greater efficacy than placebo for pain relief, improvement
in global well-being and physical function. The recommended dose of milnacipran is 100mg
or 200 mg daily. Adverse effects of milnacipran such as:
- nausea
- headache
- constipation
Are the main reasons for discontinuation of treatment. Milnacipran is not available in
Singapore at this point of time. In practice, patients often respond to combination of
pharmacological treatments, although studies of combination pharmacotherapy are still
limited. A α2δ calcium-channel antagonist gabapentin in combination with SNRI venlafaxine
was found to be more effective in improving symptoms of pain, fatigue, mood disturbance
and insomnia in patients with neuropathic pain who did not respond to gabapentin
monotherapy. Combinations of TCA and SSRI have also been proven more effective than
either medication used alone. Other SSRIs (fluoxetine, fluvoxamine, citalopram and
paroxetine) and TCA (amitriptyline, desipramine) have all been studied for treatment of
FM but most showed modest efficacy at best.
A 2009 meta-analysis of 18 randomised, placebo-controlled studies of a variety of
anti-depressants showed strong evidence for efficacy of anti-depressants for pain relief,
fatigue, depressed mood, sleep disturbance and in improving health-related quality of
life. As there is no inflammation present in FM patients, anti-inflammatory drugs such as
NSAIDS and steroids, are not effective. However, they have a role if there is concomitant
inflammation condition which serves as a nociceptive trigger. Paracetamol helps pain
relief but often insufficient when taken alone. Paracetamol in combination with tramadol,
a narcotic that combines μ-opioid agonistantagonist and SNRI activities may be helpful.
Common side effects of tramadol are:
- nausea
- constipation
- pruritis (Itching)
However, the risk of abused and dependence with tramadol is low as compared to other
opioids. Other pharmacologic modalities included use of human growth hormone,
dehydroepiandrosterone (DHEA), 5-hydroxytryptophan, topisetron and pramipexole remain
under investigation. Most of these drugs attempt to combat fatigue, rigidity, insomnia or
poor sleep.
Non-pharmacological Treatment
Non-pharmacolgical treatment modalities, including aerobic exercises, physical therapy,
cognitive behavioural therapy (CBT), massage and acupuncture can be helpful. Few of these
approaches have been demonstrated to have clear-cut benefits in randomised controlled
trials. The role of aerobic exercise has been supported by systematic review. It was
postulated that aerobic exercises can stimulate endogenous analgesic systems, increase
time spent in deep sleep and increase a sense of well-being and control. The challenge is
to start and maintain FM patients in a structured exercise programme and the key here is
to encourage exercise according to fitness level. Low impact exercise may be tailored to
individuals with musculoskeletal problems. Adjunctive CBT will be indicated for patients
with prominent psychosocial stressors, and/or difficulty coping, and/or difficulty
functioning. CBT has also been proven on meta-analysis to improve FM. CBT addresses the
various aspect of the biopsychosocial model of FM and can decrease depression and pain.
Patient education as a modality has been found to have therapeutic effect with patient
undergoing education intervention having had significantly more improvement than controls
but improvements are short-term. Appropriate patient selection may improve efficacy. More
research is needed to confirm the effectiveness and to determine the best match of
treatment components to particular sets of FM symptoms.
Other modalities include acupuncture, trigger point or tender point injections,
EMG-biofeedback, chiropractic or massage. There is increased interest to develop more
effective non-pharmacological treatment modalities in FM as our ability to accurately
measure effect of treatment has improved. The multifaceted nature of FM suggests that
multimodal individualised treatment programmes may be necessary to achieve optimal
outcomes in patients with this syndrome.
Conclusion
Management of fibromyalgia requires knowledge of its broad spectrum of symptomatology
that goes beyond addressing simple complaint of pain. While diagnostic criteria do exist,
they were originally developed for research purposes and need further refi nement as
understanding of fibromyalgia has evolved. Although diagnosis can be difficult, new
treatments, better understanding of the pathophysiology and greater involvement of
different specialities can pave the way for improvement in the diagnosis of FM. Often, a
multidisciplinary healthcare setting is required to address the multidimensional nature
of FM. Outcome measures borrowed from clinical research in pain, rheumatology, neurology
and psychiatry enable treatment response in specific symptoms domains. Managing FM
patients encompass an art of practising medicine as much as knowing its scientific basis.
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Source:
* Yong-Yeow Chong, Beng-Yeong Ng, Clinical Aspects and Management of Fibromyalgia
Syndrome, Annals, Academy of Medicine, Singapore (AAMS), 2009;38:967-73,
http://www.annals.edu.sg/pdf/38VolNo11Nov2009/V38N11p967.pdf, Accessed Nov. 30, 2009.
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DECEMBER 2009
Just Four Quid
URL: http://justfourquid.com
Description:
Just Four Quid is a year long campaign to raise money for biomedical - not psychological
- research into ME (also known as CFS/ME). To help you afford to give, I offer weekly
moneysaving tips and ask you to donate part of your saving; for example, if the tip saves
you a tenner you might donate a fiver. You could even end the year better off! The
campaign is in aid of ME Research UK and the ME Association's Ramsay Research Fund, with
their full support and cooperation. We donate either directly to their offices or online
via JustGiving (a donation website for over 8,000 UK charities). So let's band together,
tell everyone about the campaign, and start saving and raising money!
Meeting of the All Party Parliamentary Group on ME
Date: December 2, 2009
Location: Committee Room 15, House of Commons
Time: 3:15 to 4:45 pm
Description:
Agenda items include: Report of the APPG Inquiry into NHS Services; speaker, Mike O'Brien
MP, Minister of State for Health Services; APPG legacy paper; XMRV research;
acessibiliity of venues for future meetings; and Welfare Report (Employment and Support
Allowance and Welfare Reform Bill).
Sutton Coldfield ME Support Group Meeting
Date: December 2, 2009
Location: 12 Four Oaks Road, Four Oaks, Sutton
Coldfield, West Midlands B74 2TH
Time: 11:00 am
Description:
This is a new, independent group which is run in a very informal, positive and friendly
manner. All are welcome
More Information:
Linda Jones, tel: 07894
205 155.
ME North East Meeting
Date: December 2, 2009
Location: Bullion Hall, South Approach,
Chester le Street DH2 2DW
Time: 1-4 pm
Speaker: Julia Newton, professor of aging and medicine
at the Institute for Aging and Health at Newcastle University
Description:
Professor Newton will provide an update on medical research into ME/CFS and take
questions and answers. Professor Newton is running ongoing ME research projects –
including a muscle physiology study funded by The ME Association's Ramsay Research Fund.
More Information:
Email or tel: 0191 389 2222.
Kirklees Independent ME Support Group Open Meeting
Date: December 3, 2009
Location: The Nerve Centre, 2nd Floor (access by lift),
Standard House, Half Moon Street, Huddersfield HD1 2JF
Time: 1:30 to 3:00 pm
Speaker: Suzanne Moore, cognitive behavioural therapist
Description:
Suzanne Moore will talk and take questions on a technique called Mindfulness-based
Cognitive Therapy(MBCT) which she uses on the an eight-week chronic illness management
course run at the ME/CFS clinic in Leeds. It is used a lot by people with pain and
stress-related conditions
More Information:
Lynda Treece,
tel: 01274 416 737.
American Academy of Addition Psychiatry 20th Annual Meeting and Symposium
Date: December 3-6, 2009
Location: Los Angeles, California
Description:
The AAAP 20th Annual Meeting and Symposium provides researchers and healthcare
practitioners the latest developments in treating mental health and substance use
disorders.
More Information:
Click Here
XMRV and the 10/29/09 CFSAC Meeting
Date: December 6, 2009
Time: 2 pm to 5 pm
Cost: $10.00
Location: Holiday Inn of Batavia NY (8250 Park Road,
Batavia, NY, 14020), right next to the NY State Thruway.
Description:
Because of the enormous interest generated, Dr. David S. Bell, MD will be giving a talk
on the XMRV virus and what is known about its relationship to ME/CFS. In this lecture,
material will be presented from the Science paper, Dr. Dan Peterson's testimony at
the CFS Advisory Committee meeting, and our hopes for a study to help confirm these
findings. Dr. Bell will also share his opinions about treatment options that may open up
in the future.
More Information:
Lynnews@davidsbell.com
Fibromyalgia Education & Support Network of Arkansas Meeting
Date: December 7, 2009
Time: Begins at 6:30 pm.
Location: Maurice Room
Location: Hot Springs, Arkansas
Description:
Special guest will be Dr. Ryan Johnston. Dr. Johnston has recently relocated to Hot
Springs from the St. Louis area where he has orchestrated his wife's fibromyalgia health
care. He has specialized his care by treating many chronic conditions, and has
successfully managed his wife's fibromyalgia associated symptoms through chiropractic.
Dr. Johnston is also an Air Force veteran serving in both Iraq, and Afghanistan. Don't
miss out on this opportunity to hear from one of Hot Springs newest health care experts.
Potluck Dinner: We are doing a potluck on our regular
meeting night. Check out the website to signup for what you want to bring.
Peterborough ME Support Group Meeting
Date: December 10, 2009
Time: Begins at 8:00 pm.
Location: Tysdale Centre, South Bretton, Peterborough
Description:
Presents the "Hereward Harmony" singers, a male voice choir
More Information: Contact Marian or John Dunham
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
JANUARY EVENTS -
Just Four Quid
URL: http://justfourquid.com
Description:
Just Four Quid is a year long campaign to raise money for biomedical - not psychological
- research into ME (also known as CFS/ME). To help you afford to give, I offer weekly
moneysaving tips and ask you to donate part of your saving; for example, if the tip saves
you a tenner you might donate a fiver. You could even end the year better off! The
campaign is in aid of ME Research UK and the ME Association's Ramsay Research Fund, with
their full support and cooperation. We donate either directly to their offices or online
via JustGiving (a donation website for over 8,000 UK charities). So let's band together,
tell everyone about the campaign, and start saving and raising money!
Sutton Coldfield ME Support Group Meeting
Date: January 6, 2010
Location: 12 Four Oaks Road, Four Oaks, Sutton Coldfield,
West Midlands B74 2TH
Time: Begins at 11:00 am
Description:
This is a new, independent group which is run in a very informal, positive and friendly
manner. All are welcome
More Information:
Linda Jones, tel: 07894 205 155.
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