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The latest news on fibromyalgia syndrome and chronic fatigue syndrome is posted below in support of Fibromyalgia Network's mission to educate patients and the media with ad-free reporting.
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- Virus Linked to CFS - October 29, 2009
- Creatine Supplementation Shows Promise - September 30, 2009
- Researchers Use Exercise to Illuminate How You Feel - Aug. 27, 2009
- GI Symptoms & Novel Therapy - July 30, 2009
Virus Linked to CFS
but is history repeating itself?
Earlier this month, a relatively new retrovirus called XMRV was reported to be found in 68 percent of 101 chronic fatigue syndrome (CFS) blood samples, while the viral infection was detected in only 3.7 percent of 218 healthy controls. Scientists at the Whittemore Peterson Institute in Reno, NV, whose medical director is Daniel Peterson, M.D., worked in collaboration with the Cleveland Clinic and the National Cancer Institute to generate this discovery published in the journal Science.1 Following the study, a press release from the Whittemore Peterson Institute stated the tests for XMRV were refined and now up to 95 percent of the CFS samples have evidence of the virus.
XMRV was originally discovered by researchers at the Cleveland Clinic in 2006 from prostate cancer tissue of men who had a specific genetic defect in their antiviral enzyme RNASE L.2 This enzyme destroys viruses by degrading RNA, their genetic machinery. A similar defect associated with a portion of CFS patients prompted researchers to suspect that XMRV might be linked to this illness, which then led to the report in Science. The relationship between prostate cancer and the virus is unknown, and it turns out that the RNASE L enzyme defect did not correlate with the presence of XMRV in the CFS patients studied.
Aside from XMRV, there are two other known retroviruses, HIV which causes AIDS and HTLV which causes leukemia. This family of viruses operate by inserting their genetic RNA material into their hosts' genetic DNA, causing permanent changes in the way the hosts' cells operate. Retroviral infections are serious business that cause lifelong diseases affecting the immune and neurological systems, unlike the common flu bug that usually only makes you ill for a few days. While the prospect of a viral cause may validate the symptoms of CFS and possibly fibromyalgia (a small sample of patients have tested positive), the study findings need to be confirmed and many more questions need to be answered.
Keep in mind that close to 4 percent of the healthy subjects turned up positive for XMRV. Does this mean that the virus is benign or will these subjects start to develop symptoms of CFS after some unknown environmental trigger? The role this virus might be playing in CFS is completely unknown. Is this some sort of "passenger" virus that happens to infect people with a dysfunctional immune system? Whether XMRV is involved in the generation of CFS symptoms remains unclear, but researchers appear confident that the virus is not airborne.
Depending upon your perspective, the report of a retroviral link to CFS can be exciting or alarming news. However, the history of CFS is paved with a number of viral claims by well-intended scientists that later turned out not to be the cause of this condition.
After the first outbreak of fatiguing illnesses occurred in Incline Village, NV, where Dr. Peterson was practicing in 1984, there were others that occurred elsewhere in the United States. The initial name was post-viral fatigue syndrome because the symptoms seemed like they were caused by a virus, but no specific agent could be identified. Then researchers claimed the illness was caused by the Epstein-Barr virus (EBV), the bug that causes mono, because almost every patient had antibodies to EBV. As it turned out, so did everyone else in the general population over the age of 6. Then came human herpes virus 6 (HHV-6), followed by HHV-7, an enterovirus that infected the muscles, cytomegalovirus (CMV), and others that were later found not to be the cause of CFS.
While the patients for the current study all met the CFS diagnostic criteria, the authors state, "Samples were selected from several regions of the United States where outbreaks of CFS had been documented." They go on to say that these are severely disabled patients with multiple immunological abnormalities and extremely low exercise capacities. It remains unknown how these CFS patients from the mid-1980s outbreaks compare to today's population of CFS patients or those with fibromyalgia.
Given the number of viral reports that have been associated with CFS, it would be prudent to wait for an independent laboratory to confirm the initial study that appeared this month in Science. This does not in any way diminish the potential significance of the research findings by the Whittemore Peterson Institute, but until more information is known, there is really nothing else we can do but wait.
- Lombardi VC, et al. Science 326:585-89, 2009.
- Urisman A, et al. PloS Pathogens 2:211-25, 2006.
Creatine Supplementation Shows Promise
Creatine plays a pivotal role in making the "energy currency" referred to as ATP that fuels your brain and muscle tissues. Athletes use this over-the-counter nutritional supplement as a performance enhancer, and creatine can be purchased inexpensively in a flavored powder to make a sports drink. Studies show that supplementing 5 grams per day of creatine can improve cognitive function and build muscle strength, yet it's relatively free of side effects (unlike most prescription medications).1,2
While creatine sounds like a useful supplement, is there any evidence pointing to its potential to reduce fibromyalgia symptoms? Yes. More than one study has documented low ATP and creatine levels in the muscles of fibromyalgia patients.3,4 In addition, reduced blood flow and impaired energy metabolism in the brain have also been reported.5,6 The muscle findings correlated with pain, fatigue and reduced endurance, while the reports in the brain correlated with pain and overall function of patients with fibromyalgia.
Using the above reasons as a basis for why creatine might relieve the symptoms of fibromyalgia, a research team headed up by Howard Amital, M.D., of Israel, tested the nutritive supplement in 30 patients.7 The design of the study was uncontrolled (i.e., there was no placebo group for comparison) and the creatine was taken three times a day as an "add on" to the subjects' current therapies which were not changed. Patients were evaluated at the beginning of the trial, after four weeks, after eight weeks (at the end of the creatine supplementation), and then at 12 weeks (4 weeks after discontinuing the supplement). Various pain, sleep and function-related questionnaires were used to assess fibromyalgia symptoms.
Only 16 of the 30 patients completed the eight-week trial, beginning with 1 gram tablets of creatine taken three times a day. After the third week, subjects increased their dose to 5 grams per day. Many subjects dropped out early in the study due to difficulties in swallowing the tablets, inability to adhere to the new treatment regimen (remembering to take 3 to 5 tablets per day), or fears that the new therapy would produce side effects.
Measures of pain, sleep, and physical function all improved significantly from the beginning of the study to the eighth week, based on subjective patient reports. After discontinuing the creatine, symptom deterioration was apparent. All findings were averaged for the group and turned out significant, with no side effects reported.
"In our study," writes Amital, "there was a notable range in responses to creatine among subjects, as opposed to a uniform influence, suggesting the existence of creatine responders and nonresponders." Due to the small number of patients studied, differences between the two groups, particularly characteristics of those who really improved on the supplement, could not be identified. Amital states that in the future, larger studies may reveal the differences between responder and nonresponders.
Another point made by Amital was that many of the study patients were trying creatine because all other therapies had failed to work (i.e., they were at the severe end of the fibromyalgia spectrum and may have been less likely to respond). He suggests that creatine might have a more pronounced effect when used in patients with less severe disease.
Creatine is most commonly purchased as a flavored powder (some taste better than others). It costs roughly $10 per month if you consume a total of 5 grams per day of the supplement (taken in three divided servings throughout the day). Drink with lots of water or fluids because it makes you thirsty, and the fluid helps ensure that the energy-making molecule is distributed to every cell. You can put the powder into orange juice or other carbohydrate-only flavored drinks, but avoid taking it with caffeine or protein because they will inhibit its absorption into the bloodstream. If you encounter bloating, water retention, or the thirst cravings are too intense, try dropping down to 3 grams per day (it's possible to achieve the same desired effects at this lower dose).8 Consult your doctor before starting and be aware that creatine may not be advised for people with a history of kidney disease because its elimination from the body places an added load on your kidneys.
- Rae C, et al. Proc R Soc Lond B 270:2147-50, 2003.
- Cooke MB, et al. J Int Soc Sports Nutri 6:13-23, 2009.
- Park JH, et al. Arthritis Rheum 31:406-13, 1998.
- Lund E, et al. Scand J Rheumatol 32:138-45, 2003.
- Mountz JM, et al. Arthritis Rheum 38:926-38, 1995.
- Wood PB, et al. J Pain 10:47-52, 2009.
- Leader A, et al. Ann NY Acad Sci 1173:829-36, 2009.
- Terjung RL, et al. Med Sci Sports Exerc 32:706-17, 2003.
Researchers Use Exercise to Illuminate How You Feel
Posted: August 27, 2009
What if a blood test could reveal the muscle fatigue, pain and exhaustion that you feel? This may seem like a pipe dream, but a husband and wife team at the University of Utah (Alan Light, Ph.D., and Kathleen Light, Ph.D.) just published very encouraging preliminary findings and are now working to refine their biomarker techniques.*
One of the key elements of the Lights' studies involves looking at what happens when people with chronic fatigue syndrome (CFS) and fibromyalgia exercise. During and after exertion is when CFS and fibromyalgia patients say they feel the worst, which is why the Lights are capturing blood samples up to 48 hours after a standard exercise routine. Healthy people, however, usually find a bout of exercise to be invigorating, and it pours out substances that reduce painful sensations.
The symptoms in up to 70 percent of fibromyalgia and CFS patients overlap, and both conditions are defined by symptoms, which makes their diagnosis and treatment all the more difficult. Patients also face serious credibility issues in the doctor's office when their symptom severity cannot be documented anywhere in their blood work or other standard tests. Without disease biomarkers, it is hard to be a patient with fibromyalgia or CFS, but there is good reason to believe this gloomy picture is going to change.
Your muscles have a system to sense fatigue, just as they are capable of sensing pain. It is all based on the metabolic or chemical byproducts made in your muscles. The more you work your muscles, the greater the accumulation of metabolic substances that can stick around to activate the pain and fatigue detectors. Healthy people and CFS and fibromyalgia patients have these same detectors in their muscles. Perhaps exercise may cause more to be produced, or they might be more easily activated in CFS and fibromyalgia patients. These are questions that the Lights sorted out in their preliminary study of 19 CFS patients (13 of them meeting the diagnosis for fibromyalgia) and 15 control subjects.
The detection system that initially signals "fatigue" in exercising muscles and later picks up "pain" actually involves four different chemical receptors. In addition, there are sensory receptors used by your peripheral nervous system and various substances released by your immune system, all of which may combine to set off alarms of pain and fatigue in your muscles.
Prior to exercise, the levels of the various sensory receptors and immune substances were similar between the fibromyalgia and CFS patients and healthy controls. This finding alone explains why everything looks so "normal" with your blood work and could also be the reason why other research teams have not been able to find significant abnormalities in your blood. However, after 25 minutes of moderate (not maximal) exercise, differences between the patients and controls were dramatic.
"Thirty minutes after exercise, we were seeing substantial increases in all of these receptors," says Dr. Alan Light. The healthy controls showed little change throughout the 48-hour test period. Referring to the receptor activations in the CFS patients, Light adds, "At 48 hours, they are barely just starting to go down."
The Lights identified multiple sensory receptors that increased two to eight times their resting values in the CFS patient group. Many of the immune substances and receptors used by the peripheral nervous system (such as the adrenergic receptors) were also greatly elevated by the exercise routine. In comparison, little to no activity occurred with any of these receptors or substances in the healthy subjects.
Elevation of certain sensory receptors and immune substances were more likely to be correlated with fatigue while others were more likely to be associated with symptoms of pain. The Lights point out that there may be several subgroups of CFS and fibromyalgia, which makes sense because not all patients respond in the same fashion to medications. But "a simple blood test that provides an objective measure for excessive and debilitating fatigue would be diagnostically valuable to physicians and patients with CFS." Being able to tease out the different subtypes and offer an objective measure of widespread muscular pain for fibromyalgia patients would truly be an asset.
Now that the Lights have published the groundwork on a small group of CFS patients, with 70 percent meeting the criteria for fibromyalgia, they are moving on to refining their tests with the goal of generating biomarkers for these two conditions. The CFIDS Association of America is funding the expansion on CFS patients while the American Fibromyalgia Syndrome Association is funding the expansion on fibromyalgia. The goal is to turn this preliminary work into test markers that validate how severely impacted you are by your symptoms and to give researchers a guidepost for testing the effectiveness of new medications.
* Light AR, et al. J Pain July 31, 2009 [Epub ahead of print].
For more details on the above findings, please see the October 2008 and July 2009 issues of the Fibromyalgia Network Journal.
GI Symptoms & Novel Therapy
Posted: July 30, 2009
Do you have lots of different gastrointestinal (GI) symptoms? Could they be associated with your widespread pain or fatigue severity? Do you wonder which specific GI symptoms are most common in people with fibromyalgia? And perhaps most importantly, what are your treatment options?
A published report by a Turkish team compared the frequency of various GI symptoms in 152 fibromyalgia patients to those found in 98 people with rheumatoid arthritis (RA) and 60 healthy controls.1 They looked at the widespread pain and fatigue severity scores in each group to determine if any GI symptoms occurred more often when higher pain or fatigue levels were present. The research team also wanted to find out if patients who took medication use for treating acid reflux (e.g., gastro-protective agents such as proton pump inhibitors like Prilosec) had reduced GI symptoms.
Although RA is a chronic painful illness, the symptom severity scores for widespread pain and fatigue were almost twice as bad for patients in the fibromyalgia group. Functional impairment, morning tiredness, and sleep disturbance were also worse for the fibromyalgia group compared to those with RA. So it should be no surprise that the GI symptoms occurred with a greater frequency in the fibromyalgia group and caused an increased disruption in quality of life.
The most commonly reported GI symptoms in the fibromyalgia patients were belching, acid reflux, gas and bloating, sour taste, and vomiting. For the most part, the various GI symptoms intensified as the widespread pain and fatigue severity scores increased. Yet, there was no difference in GI symptom severity between the fibromyalgia patients who took gastro-protective agents versus those who did not. It would seem that the proton pump inhibitor agents that were taken by one-third of the patients were not very effective for soothing the painful symptoms of acid reflux.
Is there another type of medication that might be useful for treating acid reflux? Possibly. A preliminary study using an old and inexpensive drug, baclofen, showed it effectively cut the number of nighttime acid reflux events by 65 percent.2 This, in turn, led to a significant improvement in the quality of sleep because the small group of 13 study participants experienced fewer reflux episodes that interfered with their sleep.
Baclofen is a heavily sedating drug, which limits daytime use. However, the supine position of sleep makes acid reflux much worse, so nighttime treatment may be most effective. The subjects in this study took 40 mg of baclofen 90 minutes before bedtime. Given that fibromyalgia patients are known to be drug sensitive, a lower dose of 10 mg should be tried initially on a night that you do not have to get up and go the next morning. According to the Oklahoma City research team, baclofen works by reducing the tendency of the cardiac sphincter, or valve, between the esophagus and the top of the stomach, to open. In normal people, this valve prevents the back flow of acid up into the esophagus.
- Pamuk ON, et al. J Rheumatol [Epub ahead of print] July 1, 2009.
- Orr WC, et al. SLEEP 2009, Abstract 1030, Associated Professional Sleep Societies, LLC, Seattle, WA.
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