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| Survey Results & What They Mean To You - Part 3 |
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Stress Makes Your FM and/or CFS/ME Worse When we asked people if stress made their FM and/or CFS/ME symptoms worse, 95% of them answered yes. We decided to see how effective the following treatments were for stress. Here is what we found: |
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As you can see from the numbers above, the top five treatments (in order) for stress were Heat Therapy, Anti-Anxiety Medications, Sleep Medications, Pain Medications and Muscle Relaxants. At 79%, Heat Therapy was the most effective treatment for stress. |
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Inability to Concentrate When we asked people if they had trouble concentrating, 93% of them answered yes. We decided to see how effective the following treatments were for the inability to concentrate. Here is what we found: |
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As you can see from the numbers above, the top five treatments (in order) for the inability to concentrate were Heat Therapy, Sleep Medications, Pain Medications, Anti-Anxiety Medications and Muscle Relaxants. At 79%, Heat Therapy was the most effective treatment for the inability to concentrate. |
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Sleep Problems When we asked people if they suffered from sleep problems, 89% of them answered yes. We decided to see how effective the following treatments were for sleep problems. Here is what we found: |
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As you can see from the numbers above, the top five treatments (in order) for sleep problems were Heat Therapy, Sleep Medications, Anti-Anxiety Medications, Pain Medications and Muscle Relaxants. At 75%, Heat Therapy was the most effective treatment for sleep problems. |
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Memory Loss When we asked people if they suffered from memory loss, 88% of them answered yes. We decided to see how effective the following treatments were for memory loss. Here is what we found: |
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As you can see from the numbers above, the top five treatments (in order) for memory loss were Heat Therapy, Sleep Medications, Pain Medications, Anti-Anxiety Medications and Muscle Relaxants. At 76%, Heat Therapy was the most effective treatment for memory loss. |
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Trouble Communicating When we asked people if they had trouble communicating their thoughts or ideas, 86% of them answered yes. We decided to see how effective the following treatments were for trouble communicating. Here is what we found: |
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As you can see from the numbers above, the top five treatments (in order) for trouble communicating were Heat Therapy, Sleep Medications, Anti-Anxiety Medications, Pain Medications and Muscle Relaxants. At 72%, Sleep Medications and Heat Therapy were tied for the most effective treatment. |
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Headaches When we asked people if they suffered from headaches, 85% of them answered yes. We decided to see how effective the following treatments were for headaches. Here is what we found: |
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As you can see from the numbers above, the top five treatments (in order) for headaches were Heat Therapy, Sleep Medications, Pain Medications, Massage Therapy and Anti-Anxiety Medications. At 72%, Heat Therapy was the most effective treatment for headaches. |
| Sodium Oxybate Improves Symptoms of Fibromyalgia |
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Does sodium oxybate improve symptoms in patients with Fibromyalgia? Bottom Line In highly selected patients with Fibromyalgia, sodium oxybate (Xyrem) improves symptom scores. Sodium oxybate is a schedule III drug and is only available through the manufacturer with tight eligibility and monitoring requirements. Synopsis Adult patients meeting the American College of Rheumatology criteria for Fibromyalgia and with pain scores higher than 40 on a 100-point visual analog scale were randomly assigned to receive an oral solution of sodium oxybate (4.5 g or 6 g) or placebo (matched to active treatment by volume). Because sodium oxybate has a short half-life (30-60 minutes), patients were asked to set an alarm to take a second dose 2.5 to 4 hours later. Patients with comorbid conditions were excluded. During the 8-week study period, patients were asked to not use opiates, tramadol, antidepressants, or muscle relaxers, but were permitted to continue massage, acupuncture, physical therapy, or other behavioral and cognitive therapies. Additionally, they were allowed to use one OTC analgesic for rescue purposes. The study inclusion and exclusion criteria and participation requirements likely resulted in patients who are not like the patients with Fibromyalgia we see in the real world. The main outcome measure, assessed via intention to treat, was a 20% reduction in a composite score for changes from baseline in 3 coprimary self-report measures: patient's pain rating (in daily electronic diaries) on a visual analog scale, the Fibromyalgia Impact Questionnaire score, and the Patient Global Impression of Change. This threshold is consistent with the minimal clinically important difference. In patients taking 4.5 g sodium oxybate, 34.5% had 20% improvement compared with 27.3% of those taking 6 g sodium oxybate, and 12.5% of those taking placebo. The numbers needed to treat are 5 (95% CI, 3-122) and 7 (4-107), respectively, for the two treatment groups. It is unclear why the lower dose was more effective. There were comparable improvements in many other measures of symptoms and function. However, there were no reductions in the number of tender points. Patients taking the higher dose were more likely to experience adverse events. Nausea and dizziness were the most common side effects. Only one patient had a serious adverse event. |
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| In-Depth Look at FM Medications - Savella® |
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Forest Laboratories, Inc. and Cypress Bioscience, Inc. have announced that Savella® (milnacipran HCl), a selective serotonin and norepinephrine dual reuptake inhibitor approved for the management of fibromyalgia, will be shipped to wholesalers on April 24th and will be available at pharmacies beginning on April 28th. After Savella was approved by the U.S. Food and Drug Administration (FDA) on January 14, 2009, the companies submitted a minor post-approval cosmetic formulation change to the FDA which now has been approved. About Savella Savella was approved by the FDA on January 14, 2009 for the management of fibromyalgia, a chronic condition characterized by widespread pain and decreased physical function that afflicts as many as six million people in the United States. Savella is a dual-reuptake inhibitor that, in-vitro, preferentially blocks the reuptake of norepinephrine with higher potency than serotonin, two neurotransmitters thought to a play a central role in the symptoms of fibromyalgia. Savella will be marketed by Forest and its licensor, Cypress Bioscience. Pierre Fabre, who originally developed and sells milnacipran outside the U.S., licensed the rights for North America to Cypress Bioscience. Important Safety Information Savella is a selective serotonin and norepinephrine reuptake inhibitor (SNRI), similar to some drugs used for the treatment of depression and other psychiatric disorders. Antidepressants increased the risk compared to placebo of suicidal thinking and behavior (suicidality) in children, adolescents, and young adults in short-term studies of major depressive disorder (MDD) and other psychiatric disorders. Anyone considering the use of such drugs in a child, adolescent, or young adult must balance this risk with the clinical need. Short-term studies did not show an increase in the risk of suicidality with antidepressants compared to placebo in adults beyond age 24; there was a reduction in risk with antidepressants compared to placebo in adults aged 65 and older. Depression and certain other psychiatric disorders are themselves associated with increases in the risk of suicide. Patients of all ages who are started on Savella should be monitored appropriately and observed closely for clinical worsening, suicidality, or unusual changes in behavior. Families and caregivers should be advised of the need for close observation and communication with the prescriber. Savella is not approved for use in the treatment of major depressive disorder. Savella is not approved for use in pediatric patients. Do not take Savella together with a monoamine oxidase inhibitor (MAOI) such as:
You must wait at least 14 days after stopping an MAOI before you can take Savella. SSRI antidepressants may cause serious or life-threatening lung problems in newborn babies whose mothers take the medication during pregnancy. However, you may have a relapse of depression if you stop taking your antidepressant during pregnancy. If you are planning a pregnancy, or if you become pregnant while taking Savella, do not stop taking the medication without first talking to your doctor. Blood pressure and heart rate should be monitored prior to initiating treatment with Savella and periodically throughout treatment. SSRIs, including Savella, have been associated with reports of increases in blood pressure and heart rate. Pre-existing hypertension, tachyarrhythmias and other cardiac diseases should be treated before starting therapy with Savella. Savella should be used with caution in patients with significant hypertension or cardiac disease. For patients who experience a sustained increase in blood pressure or heart rate while receiving Savella, either dose reduction or discontinuation should be considered. Savella should be prescribed with caution in patients with a history of:
Savella has been associated with mild elevations of ALT and AST. Rarely, fulminant hepatitis has been reported in patients treated with milnacipran. Savella should be discontinued in patients who develop jaundice or other evidence of liver dysfunction and should not be resumed unless another cause can be established. Savella should not be prescribed to patients with substantial alcohol use or evidence of chronic liver disease. As with other SNRIs and SSRIs withdrawal symptoms have been observed following discontinuation of milnacipran. A gradual dose reduction is recommended. Hyponatremia, (an electrolyte disturbance), may occur as a result of treatment with SSRIs and SNRIs, including Savella. Discontinuation should be considered for patients with symptomatic hyponatremia. SSRIs and SNRIs, including Savella, may increase the risk of bleeding events. Patients should be cautioned regarding the risk of bleeding associated with concomitant use of Savella and NSAIDs, aspirin, warfarin or other drugs that affect coagulation. Male patients with a history of obstructive uropathies may experience higher rates of genitourinary adverse events. Savella is unlikely to be involved in clinically significant pharmacokinetic drug interactions. Pharmacodynamic interactions of Savella with other drugs can occur. Savella contains FD&C Yellow No. 5, which may cause allergic-type reactions in susceptible persons. In clinical trials, the most frequently occurring adverse reaction was nausea. The most commonly occurring adverse reactions (greater than or equal to 5% and twice that of placebo) were:
We hope this article has been helpful. Next month our focus will be on Cymbalta®. |
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| The Alexander Technique |
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What is the Alexander Technique The Alexander Technique is a method of changing the way the body moves and is lined up, based on the alignment of the head, neck and spine. This can help to improve posture, balance, coordination, support and ease of movement, reduce muscular tension, and even improve breathing. The Alexander Technique has a holistic approach – it does not only focus on the body, it focuses on the mind as well, confirming the connection between the two. The Alexander Technique aims to break long-term bad habits of movement and posture, such as slouching and tensing, and create new, better ones. Rather than being an exercise programme, the idea behind the Alexander Technique is that it should become part of daily life. For example, people can apply the Alexander Technique at home and at work to change the way that they walk, stand, sit and lie down, rest, lift and carry. The Alexander Technique practitioners are not therapists - they simply teach the system, trying to tailor it to students’ day-to-day activities, and the students are encouraged to apply the technique daily as a method of self-care. The Alexander Technique and Fibromyalgia One of the aims of the Alexander Technique is to reduce the amount of effort required for any movement, so saving energy. This could potentially be of help in Fibromyalgia (FM), where one of the major symptoms is fatigue. The Alexander Technique also appears to improve stamina, which could help fight fatigue, and may improve concentration and attention. The Alexander Technique also looks to reduce stress and anxiety, which may be triggers for FM flares. As it reduces pain, muscular tension and anxiety and helps with relaxation, it could also improve sleep patterns in people with FM. Many people who have back or neck pain, or other types of chronic pain, including disorders such as arthritis or FM, use the Alexander Technique to relieve pain and muscular tension and become more mobile. In a study of people with chronic back pain, people who had 24 lessons in the Alexander Technique had on average three days of back pain per month – 18 fewer days of back pain than people who had standard care under a doctor. Patients who had massage therapy had about 14 days of back pain per month. People who had only six lessons of the Alexander Technique, but also underwent a program of exercise, had a similar reduction in pain. The combination of exercise and the Alexander Technique also appeared to be the most cost effective solution. |
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| The Seven Subtypes of CFS/ME |
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For a long time it has been suggested that not all cases of chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), are exactly the same and that there are in fact several subtypes of the disease. This view has been based on research findings which have shown for example that some patients have specific immune system or hormonal abnormalities while others do not. A new study carried out by researchers at St George's Hospital, University of London, now provides genetic evidence that there are indeed variations of the disease and that these influence the symptoms that predominant in individual patients. The results of the study are due to be officially presented at a CFS/ME conference in Cambridge, England which is being organised by ME Research UK and the Irish ME Trust. The study involved 55 CFS/ME patients from both the US and UK along with 75 healthy controls. The researchers took blood samples from all participants and carried out genetic analyses. Results showed seven distinct genetic patterns amongst the patients which were linked to specific symptom patterns. These are:
It was found that types four and six were the most common forms of the condition. Perhaps unsurprisingly it was found that most of the genetic markers in patients involved the regulation of the immune system. Strong evidence from other studies suggests that the immune systems of patients' remains activated after an initial trigger such as a viral infection. It is suggested that this itself is likely to cause symptoms and results in unbalanced defences which can allow other infectious agents such as bacteria and fungal organisms to cause various infections. CFS/ME support organizations such as those organising the Cambridge conference are hoping that this information will lead to blood tests which will make diagnosis of the condition much easier and more accurate and will allow for tailoring of treatment based on the particular variant the patient is suffering from. Currently, diagnosis of CFS/ME is based purely on symptomology which is often difficult given that so many symptoms overlap with many other diseases. Neil Abbot of ME Research UK said: "The discovery of a 'thumb-print' for the illness would be the single greatest advance that could be made because, at the moment, diagnosis is on the basis of a set of vague symptoms association with other illnesses. "It's a hard illness to get a handle on, so a clinical test would be the single best way forward for everyone." Lead researcher Dr. Jonathan Kerr said: "We must now determine what these sub-types represent, as they appear to be biologically meaningful, and discover their natural history and possibilities for treatment." Dr. Kerr has been one of the most prominent researchers into the genetics of CFS/ME and is dedicated to developing a diagnostic test and effective treatments for the condition. |
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| Low Dopamine: Symptoms & Remedies |
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People with fibromyalgia (FM) and chronic fatigue syndrome (CFS/ME) generally have low dopamine levels as well. Symptoms of both conditions include both cognitive effects as well as movement and balance problems. No neurotransmitter acts alone. They all work together in a complex web of activity that scientists are really just beginning to understand. Still, experts have been able to associate different neurotransmitter imbalances with certain conditions and symptoms and find some ways to help boost or decrease activity. Low dopamine levels are associated with the following symptoms:
High levels of dopamine, on the other hand, are associated with addiction, euphoria, hyperstimulation, excessive focus, suspicion, and the inability to separate what is important from what isn't. If you're taking medication that increases your dopamine levels, you should let your doctor know if you have symptoms of high dopamine, which is associated with psychological side effects. Neuroleptic (antipsychotic) drugs lower dopamine levels, so if you're taking anything in this class for another condition, you'll want to talk to your doctor about symptoms that could be related to low dopamine. Common drugs in this class include:
Increasing the Availability of Dopamine Drug treatment of low dopamine levels may include stimulant therapy with Ritalin, Concerta and Methadate (all of which contain methylphenidate). We don't have a lot of research confirming that food can boost dopamine levels in your brain, and even if it can, it would take prohibitively huge amounts to have the desired effect. In spite of the lack of hard evidence, some practitioners recommend:
Supplements believed to help raise dopamine levels include:
A Note on Tea & Theanine:
While it's generally safe to experiment with these kinds of foods, don't expect miracles and avoid extreme changes to your diet. Be sure to make changes slowly, and track your dietary changes and symptoms in a symptom journal to get an accurate gauge of what may be helping. You should always work with your doctor to decide what methods to try and how successful your treatments are. |
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| Visible and Near-Infrared Changes in CFS Patients |
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Methods Visible and near-infrared (Vis–NIR) spectroscopy was used to examine possible changes in the region of 600–1100 nm. Results Vis–NIR spectra showed sharp peaks at 694, 970 and 1060 nm and broad peaks in the regions of 740–760 and 830–850 nm. As these peaks are possibly related to oxyhemoglobin, cytochrome c oxidase and water, levels of these factors were compared between the two groups. Statistical analysis of the absorbance of Vis–NIR spectra showed a significant decrease in water content, a significant increase in oxyhemoglobin content, and a significant increase in the oxidation of heme a + a3 and copper in cytochrome c oxidase in CFS patients. Conclusions These changes imply accelerated blood flow and energy metabolism in the thumbs of CFS patients. |
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| Father's Day - June 21 |
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Father's Day is a celebration started in the early twentieth century to celebrate fatherhood and male parenting, and to honor and commemorate fathers and forefathers. Father's Day is celebrated on a variety of dates worldwide and typically involves gift-giving, and special dinners to fathers and family-oriented activities. In 2008, it was celebrated on June 15 in many countries. It originated in Spokane, Washington. This year it is celebrated on June 21 in many countries. In a few Catholic countries, it is celebrated on the Feast of St. Joseph. The first observance of Father's Day is believed to have been held on July 5 1908 in a church located in Fairmont, West Virginia, by Dr. Robert Webb of West Virginia at the Central United Methodist Church of Fairmont. Mrs. Sonora Smart Dodd of Washington thought independently of the holiday one Sunday in 1909 while listening to a Mother's Day sermon at the Central Methodist Episcopal Church at Spokane, and she arranged a tribute for her father in June 19, 1910. She was the first to solicit the idea of having an official Father's Day observance. It took many years to make the holiday official. In spite of support from the YWCA, the YMCA and churches, it ran the risk of disappearing from the calendar. Where Mother's Day was met with enthusiasm, Father's Day was met with laughter. The holiday was gathering attention slowly, but the wrong reasons: it was the target of much satire, parody and derision, including jokes from the local newspaper Spokesman-Review. Many people saw it as just the first step in filling the calendar with mindless promotions like "Grandparents' Day", "Professional Secretaries' Day", etc. all the way down to "National Clean Your Desk Day". A bill was introduced on 1913, US President Calvin Coolidge supported the idea in 1924, a national committee was formed in the 1930's by trade groups in order to legitimize the holiday. In addition to Father's Day, International Men's Day is celebrated in many countries, most often on November 19th. |
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| Disability and Chronic Fatigue Syndrome |
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Results Of 3840 studies identified, 37 reported employment status and some measure of mental or physical impairment associated with disability. Most patients with CFS in these studies were unemployed. In 22 studies, the employment status of control subjects was also available. Only depression seemed to be associated with unemployment in patients with CFS. No other measurable impairment seemed to be consistently associated with disability or work outcomes. Only cognitive behavior therapy, rehabilitation, and exercise therapy interventions were associated with restoring the ability to work. No specific patient characteristics were identified as best predictors of positive employment outcomes. No quantitative syntheses of results were performed. Conclusions For questions of disability and employment in CFS, the limitations inherent in the current literature are extensive. Methodologically rigorous, longitudinal, and interventional studies are needed to determine baseline characteristics that are associated with the inability to work and interventions that are effective in restoring the ability to work in the CFS population. Simple and consistent evaluations of functional capacity in patients with CFS are needed. |
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| On The Lighter Side |
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I heard a story about a mother who was sick with the flu. Her darling daughter wanted to be a good nurse. She fluffed the pillows and brought a magazine for her mother to read. And then she showed up with a cup of tea. "You're such a sweetheart," the mother said as she drank the tea. "I didn't know you could make tea." "Oh, yes," the little girl replied. "I put the tea leaves in the water like you do, and I boiled it, and then I strained it into a cup. But I couldn't find a strainer, so I used the flyswatter." "You what?" The little girl said, "Oh, don't worry, Mom. I didn't use the new flyswatter. I used the old one." |
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| Parting Thoughts |
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I hope you've enjoyed the FM/CFS/ME RESOURCES newsletter. It's easy to Subscribe to the 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 The 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,
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