FM/CFS/ME RESOURCES - Online Newsletter - December 1, 2009 - Vol. 2, No. 12
 



 




Newsletter
Subscribe
Suggestions
Archived Editions

Living With FM & CFS/ME
Read Their Stories
Share Your Story
Tips and Guidelines

Welcome Letter
CFS/ME Explanation
CFS/ME Myths
Family & Friends
FM Explanation
FM Myths
Letter To Loved Ones
Newly Diagnosed
Tips For You

FM/CFS/ME Survey
FM/CFS/ME Results
Take Our Quiz
Quiz Winners
Candles of Hope

About CMP
CMP vs FM
Diagnosis
Symptoms
Treatments
DECEMBER 1, 2009

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.


 XMRV Virus: What It Means To CFS/ME Patients

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.

  1. It may help convince your doctor that your illness is both "real" and "viral."
  2. 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.
  3. 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.

Return to Top

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.


 Hanukkah

Hanukkah 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.

Return to Top

Source:

* Veterans Day, Wikipedia, the free encyclopedia, wikipedia.org.


 In-Depth Look at FM Medications - Mirapex

In-Depth Look at FM Medications - Mirapex 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.

Return to Top

Source:

* Drugs.com


 How to Cut Down on Holiday Spending

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!

Return to Top

Source:

* Erin Huffstetler, How to Cut Down on Holiday Spending, Your Guide to a More Affordable Christmas, About.com, Accessed Nov. 7, 2009.


 Blood Test for Fibromyalgia?

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:

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.

Return to top of page

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

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.

Return to top of page

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).

Return to Top

Sources:

  1. 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.

  2. 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.

  3. 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.

  4. Xiao Y. M., Russell I. J., Michalek, J. E. and Wilson, R.B. Journal of Musculoskeletal Pain 2001, Volume 9, Supplement Number 5;106.

  5. 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.

  6. Clauw, D. J. The Pathogenesis of Pain and Fatigue Syndromes, with Special Reference to Fibromyalgia. Med Hypothesis 1995; 44:369-378.

  7. 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.

 Surviving The Holidays

Surviving The Holidays 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.

Return to Top

Source:

* READY OR NOT….HERE THEY COME!, THE FIBROMYALGIA TREATMENT FORUM, Accessed Nov. 19, 2009.


 Christmas Day

Christmas 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.

Return to Top

Source:

* Christmas, Wikipedia, the free encyclopedia, wikipedia.org.


 Boxing Day

Boxing Day 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.

Return to Top

Source:

* Boxing Day, Wikipedia, the free encyclopedia, wikipedia.org.


 Sensory, Adrenergic, and Immune Genes in CFS  Patients

Journal of Pain 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.

Return to Top

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.


 Kwanzaa Begins

Kwanzaa 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.

Return to Top

Source:

* Kwanzaa, Wikipedia, the free encyclopedia, wikipedia.org.


On The Lighter Side

On The Lighter Side 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."

Return to Top

Source:

* email sent from reader.


Chronic Fatigue Syndrome & Mitochondrial Dysfunction

Chronic Fatigue Syndrome & Mitochondrial Dysfunction 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.

Return to Top

Source:

* Adrienne Dellwo, Chronic Fatigue Syndrome & Mitochondrial Dysfunction, Fibromyalgia & CFS Blog, About.com.


Clinical Aspects and Management of Fibromyalgia

Annals Academy of Medicine Singapore 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.

Return to Top

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.


Events!

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.


Return to Top


 Parting Thoughts
FM/CFS/ME RESOURCES Parting Thoughts Puppy I hope you've enjoyed the FM/CFS/ME RESOURCES newsletter. It's easy to Subscribe to our newsletter.

I am constantly adding to and reviewing the information on FM/CFS/ME RESOURCES. I need your help in making the site even better. Complete Our Visitor Survey and help me learn what I am doing well, where the site may be confusing, and what new information you would like to see. It only takes a few minutes to complete the ten survey questions.

NOTE: I do not collect private information and you will not be contacted after you submit the survey.

You're Not Alone,

Signature

Owner - Patient
FM/CFS/ME RESOURCES

March
February

Attorney Database
Coping Tips
Definitions
Doctor Database
Drug Database
Events

FAQ's
Polls  -  Results
Support Group Database
What's New

CFS/ME
Cancer
Coping
Depression
Disability
Fibromyalgia (FM)
Food / Nutrition
Heart Disease
H1N1 (Swine Flu)
Medications
Miscellaneous
XMRV

Why Did You Quit
Taking Savella?


View Results
Return to Top