A web-blog (formerly known as Stu's Views and MS News), now published by MS Views and News, a patient advocacy organization. The information on this blog helps to Empower those affected by Multiple Sclerosis globally, with education, information, news and community resources.
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Disclaimer: 'MS Views and News' DOES NOT endorse any products or services found on this blog. It is up to you to seek advice from your healthcare provider. The intent of this blog is to provide information on various medical conditions, medications, treatments, and procedures for your personal knowledge and to keep you informed of current health-related issues. It is not intended to be complete or exhaustive, nor is it a substitute for the advice of your physician. Should you or your family members have any specific medical problem, seek medical care promptly.
A new database initiative will let doctors, researchers, and patients see real-time, real-world data about MS.
A new open-source database for multiple sclerosis (MS) research known as the North American Registry for Care and Research in Multiple Sclerosis, or NARCRMS, will soon be launched. Scientists, doctors, and pharmaceutical companies will be able to use the database to learn more about MS by tracking patients' disease course, comparing therapeutic outcomes, and identifying new MS biomarkers.
The initiative was announced during a keynote speech by Dr. Kottil Rammohan at this year's annual meeting of the Consortium of Multiple Sclerosis Centers (CMSC) and the Americas Committee for Treatment and Research in Multiple Sclerosis.
A Model of Success
NARCRMS will be modeled after the overwhelmingly successful database project known as the Alzheimer’s Disease Neuroimaging Initiative (ADNI), a long-term observational study launched in 2005 to follow both healthy subjects and people diagnosed with Alzheimer’s disease (AD). AD affects nearly 50 percent of all people over the age of 85, and it is the sixth leading cause of death in the U.S.
According to the ADNI website, the initiative “maintains an unprecedented data access policy intended to encourage new investigation and to increase the pace of discovery in the race to prevent, treat, and one day cure AD. All data is made available without embargo.”
The ADNI study is currently tracking 1,000 patients at 57 study sites in the U.S. and Canada. Researchers are compiling data from patient visits into an open-access database shared without restrictions, in order to advance the understanding of AD and find effective treatments. The NARCRMS database will be open-access, just like ADNI.
By collecting anonymous data on a cross-section of MS patients, patterns may emerge that reveal common lifestyle habits, genes, or environmental factors that had eluded scientists until now.
“We will amass a vast amount of information, and that will really change the way we think when we see an individual patient," explained Rammohan, a professor of clinical neurology, director of the MS Center of Excellence, and chief of the Multiple Sclerosis Division at the University of Miami’s Miller School of Medicine, in a press release.
By Maryann B. Hunsberger This article highlights the responsibilities, challenges, and rewards of caring for a loved one.
Most major life changes come with advance notice. Weddings are preceded by engagements. Births follow pregnancies. Graduations come after education. Disability, however, arrives with no notification. While MS sometimes enters a life in stages, the onset is still a surprise.
Becoming a care partner is the same way. An individual suddenly becomes responsible for another with no notice. Even after years of caring for another's wellbeing, the effort can be daunting, especially without the right direction. The proper resources, however, can both inform and encourage care partners in the task of supporting another.
This article is a resource that care providers and people with MS can use for information and reinforcement. Understanding the responsibilities and subtleties of being a care partner can assist individuals in planning ahead and being prepared for issues that might arise.
Although the demands may be great, being a care partner can be rewarding for all involved, providing essential physical, emotional, and social support for the person with MS. A care partner relationship also allows friends and family members to feel needed and grow closer with the individual receiving care.
Lara Krawchuk, MSW, LCSW, MPH, a therapist, professor, wellness educator, and the founder and owner of Healing Concepts, LLC, points out, "Being a care partner may bring pride and hope and resilience. Care partners realize they are handling something that others might not be able to cope with, helping them feel stronger."
Please note that individuals with MS who don't have care partners can also make use of the information provided in this article.
After the recent news of PML being found in a Tecfidera patient from Europe, a health care clinician wanted to share some information:
My recommendation as of now is that all patients starting on Tecfidera be tested for the presence of antibodies to the JC virus and , if present, be warned that PML is a possibility...especially (historically) if there has been prior treatment with Cytoxan, Imuran, Methotrexate, CellCept, or even long term high dose steroids.
While on Tecfidera, patients should be monitored for the presence of these antibodies at least annually.
This is not a formal recommendation but one which is being made effective immediately to all prescribers and persons taking this particular medication.
Cherie C. Binns RN BS MSCN
Disclaimer: Cherie Binns, RN BS MSCN, is writing on her own accord. Stu's Views and MS News had no input into the information being shared
(Reuters) - Biogen Idec Inc said on Wednesday sales of its big-selling new multiple sclerosis drug Tecfidera fell short of Wall Street's lofty expectations, and the company confirmed a serious brain infection in a patient who took the oral medication, sending its shares 7 percent lower.
Biogen reported the first case of progressive multifocal leukoencephalopathy (PML) in a Tecfidera patient, who had been part of a clinical trial and was taking the drug for 4-1/2 years.
The patient, who died of pneumonia, had been suffering severe lymphopenia, a low white blood cell condition, for more than three years, which Biogen said was a risk factor for developing PML.
Biogen, which has notified health regulators of the PML case, said 100,000 patients have taken Tecfidera.
Researchers have discovered that oligodendrocytes play an active role in learning motor tasks. Rodents whose oligodendrocyte precursor cells were blocked from maturation were unable to acquire a novel motor skill.
When neuroscientists talk about the process of learning, they usually discuss neurons sprouting new connections, or beefing up the ones they already have. Glia, it has long seemed, are passive bystanders. But new research published this week in Science(McKenzie et al., 2014) suggests that glia, specifically oligodendrocytes, play an active role in the learning of a new motor skill.
Using a method to block the maturation of oligodendrocyte precursor cells (OPCs) without affecting existing oligodendrocytes or myelin, researchers tested the ability of mice to pick up a novel motor task—in this case, running on a wheel with irregularly spaced rungs. Mice whose OPCs were prevented from maturing had a more difficult time learning the task. If the mice were allowed to learn the task before receiving the OPC maturation block, they were able to recall the running strategy with no problems.
The data suggest that functioning, mature oligodendrocytes are critical players in acquiring new motor-based skills. This study and others may also add some pieces to the puzzle of maturational arrest of OPCs in patients with MS.
The researchers targeted myelin regulatory factor (MyRF), a transcription factor that is only expressed in oligodendrocytes and is critical for initiating myelination. Using tamoxifen—a drug typically used to treat breast cancer but also used to modulate gene expression in mice—the researchers inactivated the MyRF allele in the OPCs of mice, preventing them from maturing into oligodendrocytes. The treatment did not affect preexisting oligodendrocytes or myelin.
The researchers then allowed the mice to learn to use the complex wheel. The complex wheel is modified from a regular running wheel by removing rungs at random intervals. Normally, wild-type mice take approximately a week to develop an effective strategy to use the wheel.
“When a normal mouse runs on a normal wheel, what it does is it reaches forward with its left front paw, and then it brings its left rear paw up and grabs the rung immediately behind its front paw,” said the study’s corresponding author, Bill Richardson, Ph.D., of University College London, in an interview with MSDF. But when the mouse runs on the complex wheel and brings its hind paw forward, the rung might not be there. “They very quickly learn to adapt and they grab the same rung as their forepaw. They learn general strategies, they don’t just memorize the pattern,” Richardson said.
[This video begins with a wild-type mouse on its first introduction to the complex wheel. Initially, the mice are clumsy and inefficient. The second piece of footage is of an experimental mouse who learned the task within 7 days. The key strategy is that the mouse brings its hind paw to the same rung as its forepaw to advance the wheel. (MacKenzie et al., Science/AAAS 2014)].
Researchers have identified a key enzyme in astrocytes that turns on during the progressive stage of multiple sclerosis, apparently boosting the local immune response and promoting neurodegeneration. The team is following up by testing a repurposed drug that targets the enzyme in mice and human cells.
CAROL CRUZAN MORTON
In the brain and spinal cord, neurons are the undisputed heads of state, the red-carpet celebrities, the pop-icon pinups. They shape who we are, how we think, what we do, and how we know where we are. But astrocytes are gaining a small measure of fame for the power they wield behind the scenes. In health and disease, they control the function and fate of neurons and other cells in nuanced ways that scientists are only beginning to understand.
Recent findings add a new twist to the astrocyte story in multiple sclerosis (MS). Astrocytes, a new study reports, may be a potential target for secondary progressive MS (SPMS), which causes the greatest disability and for which there is no effective treatment. Most people with relapsing-remitting MS (RRMS), the most common form of the disease, eventually move on to the steadily worsening SPMS. Most available therapies treat RRMS by reducing the rate or severity of immune attacks.
In the progressive stage, researchers have found, some astrocytes seem to switch on genes that drive chronic inflammation and neurodegeneration. One particular fatty molecule, lactosylceramide (LacCer), as well as the enzyme (B4GALT6) that makes it, fuel the destructive pattern by turning on a signal to recruit inflammatory monocytes from the blood, experiments in mice and with human brain tissue suggest.
A new study shows that astrocytes promote CNS inflammation through the upregulation of B4GALT6, which in turn makes LacCer in the spinal cord of mice with chronic-progressive EAE. LacCer cycles through a feedback loop that activates microglia and monocytes. Reprinted by permission from Macmillan Publishers Ltd.: Nature Medicine 20:1092-3, copyright 2014.
Importantly, inhibiting the enzyme in mice can suppress the neurotoxic astrocyte activation, Francisco Quintana, Ph.D., and his colleagues at Brigham and Women’s Hospital and Harvard Medical School in Boston report. Their paper was published online September 14 in Nature Medicine (Mayo et al., 2014).
“This is a very important and innovative step forward in understanding how astrocytes get activated and control the influx of inflammatory cells in neurological diseases such as multiple sclerosis,” Ben Barres, M.D., Ph.D., of Stanford University wrote in an email to MSDF. Barres was not involved in the Nature Medicine study. “The mechanisms that control glial activation in brain disease are poorly understood, and this paper highlights a critical role for the glycolipid lactosylceramide in this process. It has the potential to lead to new therapies by controlling unwanted inflammatory cell infiltration.”
Add one more condition to the list of things that vaccines don't cause: multiple sclerosis.
Scientists looked at about 4,700 people who received vaccines against hepatitis B (Hep B) and the human papillomavirus (HPV), and found no long-term risk of developing multiple sclerosis (MS) or similar nervous-system diseases.
Some anti-vaccination groups had raised concerns that the proteins in the Hep B and HPV vaccines could lead to the destruction of myelin, the insulating material that surrounds the parts of nerve cells called axons. Such damage, called demyelination, is the hallmark of several neurodegenerative autoimmune diseases — most commonly, MS.
Previous studies on this topic have been small. While most have found no connection between vaccination and MS, two studies did suggest a slight increase in risk, so the issue has remained controversial. [5 Dangerous Vaccine Myths]
This latest study is the largest to date and followed patients for three years after their vaccinations, said the researchers at Kaiser Permanente Southern California, a company that offers health insurance (and does not produce any vaccines or drugs). The results are published today (Oct. 20) in the journal JAMA Neurology.
The researchers wrote that the small risk of developing MS seen in some earlier studies suggests that the vaccine, like an infection, may accelerate the disease's progression in patients who already have MS or other neurodegenerative autoimmune diseases. It may be that after vaccinations, patients move more quickly from the "subclinical" stage of the disease, when no outward symptoms are seen, to a stage with visible symptoms, the researchers said.
Clinical trials can sometimes be hard to compare because the patients enrolled in those trials start out with different characteristics. This data visualization clearly reveals those differences. We analyzed 74 MS clinical trials reported between 1993 and 2014, and we extracted mean values of the 5 most frequently reported characteristics: age, gender, Expanded Disability Status Scale (EDSS) score, number of gadolinium enhancing lesions (GdEnh), and volume of T2 lesions (VolT2) in cm3. We then displayed those characteristics on radar plots.
The two large radar plots at the top represent the overall means for relapsing remitting MS (RRMS) and clinically isolated syndrome (CIS). On each axis you may mouse over the dot to display the corresponding value.
Back at the ECTRIMS conference in Sept 2014, I and a few others, were invited by Novartis to a dinner that featured guest David Osmond. David told us his story, verbally and in song. He is an amazing guy and his story of his own battles with MS, hardly left a dry eye. The song that he developed, as shown below, is a tune that many of us, will remember.
~~ Regards, Stuart Schlossman (Stu's Views)
PLEASE continue reading
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Novartis teams up with multiple sclerosis advocate and musician David Osmond to launch MS education initiative Our Voice in Song™
Through music and resources Our Voice in Song™ inspires people living with relapsing MS to become more active managers of their disease
Initiative launches with nationwide release of “I Can Do This,” a new song by Osmond to unite the MS community – available for free on www.ourvoiceinsong.com
Osmond shares his own journey living with the disease and kicks off multi-city tour with performances around the country
MS, an unpredictable, chronic disease of the central nervous system often diagnosed during the prime of one’s life, affects about 400,000 Americans and can lead to disability
EAST HANOVER, N.J., October 21, 2014 -- Today Novartis Pharmaceuticals Corporation launched a new multifaceted multiple sclerosis (MS) awareness campaign aimed to motivate people with relapsing MS to take charge of their disease. The campaign, Our Voice in Song™, features inspirational advocate and music artist David Osmond, who is debuting an original song, “I Can Do This.” The campaign serves to empower the MS community by providing resources for people to learn more about relapsing MS, including tips on how to actively manage the condition, and questions people can ask healthcare practitioners to advocate for themselves and help optimize care.
“Music motivates people and song conveys my feelings in ways that words alone cannot,” explained David, a member of the iconic musical Osmond family. “I wrote ‘I Can Do This’ to inspire people with relapsing MS to do more than simply cope with the disease, and not let their relapsing MS define them. The language of music is universal and I hope that listeners share the song so its message may encourage people to draw upon their own inner strength to meet life’s challenges head-on.”
The song was inspired by David’s own journey living with relapsing MS and the advice he received from his family. Like many with relapsing MS, David felt denial, confusion and even anger when he was first diagnosed. “I can do this” became a personal mantra that he has drawn on over the years to remind him of his own inner strength and to not live in the shadows of this disease. He wrote this deeply personal song as a way to unite the MS community and to encourage others to share their support for people with relapsing MS.
“I Can Do This” will debut on national music television network, Fuse’s Top-20 Countdown and on www.ourvoiceinsong.com, as well as on YouTube.
People are encouraged to visit www.ourvoiceinsong.com to download and share the song for free and learn more about David’s journey.
David will also be honored this month by Can Do Multiple Sclerosis, a leading patient advocacy organization. David will receive the 2014 Can Do Award on October 23 in New York City for making significant contributions to improving the lives of people with MS. He will begin a multi-city tour next month to share his motivational story and perform his new song at local MS community events.
“This is an exciting time for relapsing MS due to the continued breakthroughs in research. Traditionally, patients who take disease-modifying therapies had the options of injections or infusions. Now, there are oral options, which some patients may prefer,” explained Shanan Munoz, M.D., Assistant Professor of Neurology and Neurotherapeutics at The University of Texas Southwestern. “Relapsing MS is a potentially debilitating disease and relapses may lead to disability progression, so it is important for patients to be well informed with accurate information, know their options, and work in partnership with their physician to treat relapsing MS early and effectively.”
“We are proud to be part of such a strong, courageous community working together to change the way people are living with MS,” said Christi Shaw, President of Novartis Pharmaceuticals Corporation. “David’s outlook, optimism and determination capture the spirit of today’s empowered patient, who actively manages the disease and lives a life that isn’t defined by MS.”
MS is a chronic disease of the central nervous system (CNS), in which the immune system incorrectly attacks healthy tissue.2 MS attacks the CNS – the brain, spinal cord and optic nerves – affecting the ability of nerve cells in the brain and spinal cord to communicate with each other.1 Symptoms are unpredictable and vary from person to person including fatigue, pain, muscle weakness, difficulty walking and limited mobility.1,2 MS affects around 400,000 people in the U.S., with relapsing MS being the most common form of the disease.2-4
About David Osmond
David Osmond is a solo music artist, Broadway performer, motivational speaker and lead singer of “The Osmonds 2nd Generation,” a band comprised of ‘70s pop star, Alan Osmond’s sons. He has performed before sold out stadiums in over 17 countries and has had three top 40 hits in the UK with the 2nd Generation. David is married, the father of two daughters, and nephew of Donny and Marie Osmond, musicians and hosts of the ‘70s variety show, Donny and Marie. As a long-standing advocate since his diagnosis of relapsing MS in 2006, he has received multiple awards for his commitment to the MS community.
Novartis Pharmaceuticals Corporation researches, develops, manufactures and markets innovative medicines aimed at improving patients' lives. We offer a broad range of medicines for cancer, cardiovascular disease, endocrine disease, inflammatory disease, infectious disease, neurological disease, organ transplantation, psychiatric disease, respiratory disease and skin conditions. The company's mission is to improve people's lives by pioneering novel healthcare solutions.
Located in East Hanover, New Jersey, Novartis Pharmaceuticals Corporation is an affiliate of Novartis AG, which provides innovative healthcare solutions that address the evolving needs of patients and societies. Headquartered in Basel, Switzerland, Novartis offers a diversified portfolio to best meet these needs: innovative medicines, eye care, cost-saving generic pharmaceuticals, preventive vaccines, over-the-counter and animal health products. Novartis is the only global company with leading positions in these areas. In 2013, the Group achieved net sales of USD 57.9 billion, while R&D throughout the Group amounted to approximately USD 9.9 billion (USD 9.6 billion excluding impairment and amortization charges). Novartis Group companies employ approximately 135,000 full-time-equivalent associates and sell products in more than 150 countries around the world.
For more information, please visit http://www.novartis.com.
Novartis is on Twitter. Sign up to follow @Novartis at http://twitter.com/novartis.
1. National Multiple Sclerosis Society website. Multiple sclerosis FAQs. http://www.nationalmssociety.org/What-is-MS/MS-FAQ-s#question-What-is-multiple-sclerosis. Accessed July 1, 2014.
2. Multiple Sclerosis Association of America website. Frequently asked questions about multiple sclerosis. http://www.mymsaa.org/about-ms/faq/. Accessed July 1, 2014.
3. National Multiple Sclerosis Society website. MS prevalence. http://www.nationalmssociety.org/about-the-society/ms-prevalence/index.aspx. Accessed July 1, 2014.
4. National Multiple Sclerosis Society website. Relapsing-remitting MS (RRMS). http://www.nationalmssociety.org/What-is-MS/Types-of-MS/Relapsing-remitting-MS. Accessed July 30, 2014.
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Once-daily Aubagio is the only oral treatment to significantly slow progression of disability in two Phase III studies of patients with relapsing multiple sclerosis (TEMSO and TOWER), and to have positive data on early MS (TOPIC) in its label
Monday, October 20, 2014 10:35 am EDT
"These data, along with its consistent safety and tolerability profile, make Aubagio an important treatment option for patients with relapsing MS."
CAMBRIDGE, Mass.--(BUSINESS WIRE)--Genzyme, a Sanofi company, announced today that the Food and Drug Administration (FDA) has approved the inclusion of efficacy and safety data from the TOWER and TOPIC studies of once-daily, oral Aubagio® (teriflunomide) in the product’s U.S. label.
In the TOWER study, patients with relapsing MS receiving Aubagio 14 mg had a statistically significant reduction in annualized relapse rate and relative risk of sustained disability progression compared to placebo. In addition, a significant reduction in annualized relapse rate was observed in patients treated with Aubagio 7 mg compared to placebo.
The TOPIC study was designed to assess whether initiation of Aubagio in patients who experienced their first neurological symptoms suggestive of MS could prevent or delay a second clinical attack (i.e., relapse). In this study, the proportion of patients free of relapse was statistically significantly greater for Aubagio 14 mg and 7 mg, compared to placebo. Results of the TOPIC study were published inThe Lancet Neurology in September 2014.
“Aubagio is the only oral multiple sclerosis treatment that has demonstrated a positive effect on disability progression in two Phase III clinical studies and is the only oral therapy with supporting published efficacy data on the treatment of patients who have experienced a first clinical attack,” said Dr. Aaron E. Miller, Medical Director, The Corinne Goldsmith Dickinson Center for Multiple Sclerosis, The Mount Sinai Hospital. “These data, along with its consistent safety and tolerability profile, make Aubagio an important treatment option for patients with relapsing MS.”
Aubagio was approved by the FDA in September 2012 based on data from the Phase III TEMSO study, in which patients with relapsing MS who received Aubagio 14 mg had a statistically significant reduction in annualized relapse rate and relative risk of sustained disability progression compared to placebo. Patients who received Aubagio 7 mg had a statistically significant reduction in annualized relapse rate compared to placebo.
“The update to the U.S. label reflects the breadth of data reinforcing the consistent efficacy of Aubagio,” said Genzyme President and CEO, David Meeker, M.D. “Aubagio is establishing itself within the MS treatment paradigm due to its efficacy, as well as its safety and tolerability as demonstrated during its two years on the market.”
Pooled safety analyses from more than 2,000 patients who received Aubagio in all three Phase III studies were added to the label. In the MS clinical studies with Aubagio, the incidence of serious adverse events were similar among Aubagio and placebo-treated patients. Serious events may include decreased white blood cell count, peripheral neuropathy, skin reactions and increased blood pressure. The most common adverse events associated with Aubagio in MS patients included headache, diarrhea, nausea, alopecia and increase in ALT.
About Aubagio® (teriflunomide)
Aubagio is approved in more than 50 countries around the world, including the United States, European Union, Australia, Argentina, Brazil, Canada, Chile, Columbia, Dominican Republic, Guatemala, Honduras, Mexico, New Zealand, Panama, Peru, Russia, South Korea, Switzerland, Turkey and Ukraine, with additional marketing applications under review by regulatory authorities globally. Between clinical trials and commercial use, approximately 30,000 patients have been treated with Aubagio.
Aubagio is an immunomodulator with anti-inflammatory properties. Although the exact mechanism of action for Aubagio is not fully understood, it may involve a reduction in the number of activated lymphocytes in the central nervous system (CNS). Aubagio is supported by one of the largest clinical programs of any MS therapy, with more than 5,000 trial participants in 36 countries.
U.S. Indication and Usage
Aubagio (teriflunomide) is a once-daily, oral therapy indicated for the treatment of adult patients with relapsing forms of multiple sclerosis. The recommended dose of Aubagio is 7 mg or 14 mg orally once-daily.
Largest retrospective study of its kind reveals that nearly 60 percent of patients with both uveitis and MS are diagnosed with each within a 5-year span
Newswise — CHICAGO – Oct. 19, 2014 – The results of the largest retrospective study of multiple sclerosis (MS) in uveitis patients has revealed that nearly 60 percent of patients with both diseases were diagnosed with each within a five-year span. The study is being presented today at AAO 2014, the 118th annual meeting of the American Academy of Ophthalmology. While it has long been known that there is an association between the eye condition and MS, this is the first study to provide a detailed description of the relative onset of uveitis and MS and to calculate the likelihood of an MS diagnosis among uveitis patients.
Diagnosed in approximately 38,000 Americans a year, uveitis causes swelling and irritation of the middle layer of the eye and can lead to permanent vision loss if left untreated. It is well established in the medical community that uveitis can be a sign of MS and it is estimated that 1 to 10 percent of MS patients have uveitis. The disease affects approximately 2.3 million people worldwide, causes irreversible nerve deterioration and is notoriously difficult to diagnose.
To achieve a better understanding of the association of the two diseases, researchers from Casey Eye Institute at the Oregon Health and Science University and the University of Heidelberg, Germany conducted a database search of approximately 3,000 patients with uveitis from the Casey Eye Institute and 5,319 patients from the University of Heidelberg between 1985 and 2013. Of these, 24 patients from the Casey Eye Institute and 89 patients from the University of Heidelberg fulfilled the inclusion criteria of diagnoses for both uveitis and MS and were included in the study.
Based on the prevalence of MS in American and European populations, the researchers found that MS is 18 times and 21 times more likely in an American and European population with uveitis, respectively, relative to the general population. The study found that MS was diagnosed before uveitis in 28 (29 percent) of patients, simultaneously in 15 (15 percent) of patients and after uveitis diagnosis in 54 (56 percent) of patients.
In a large sleep study that surveyed more than 2,300 people with MS, researchers found that 70% reported having at least one sleep disorder, but that 12% or fewer had received a diagnosis of, or treatment for, a sleep disorder. These sleep disorders, including insomnia, obstructive sleep apnea and restless leg syndrome, were associated in this study with abnormal levels of fatigue, a common symptom experienced by people with MS. Steven D. Brass, MD, MPH, MBA (University of California, Davis) and colleagues report their findings in the Journal of Clinical Sleep Medicine(2014 Sep 15;10:1025-3). This study and other research findings suggest that identifying and treating sleep disorders experienced by people with MS could significantly improve quality of life.
Background: MS symptoms and the sleep problems that tangle up with them are many and diverse. Some are directly related to symptoms; some may be caused by the location of MS lesions (areas of damage) within the brain. Others may stem from stress. If untreated, sleep problems can increase fatigue, one of the most common symptoms of MS, occurring in about 80 percent of people. Fatigue can significantly interfere with a person's ability to function at home and work, and is one of the primary causes of early departure from the workforce. University of California, Davis researchers launched an investigation to get data on the prevalence of sleep disorders in a large sample of people with MS, and how these disorders correlate with fatigue and daytime sleepiness.
The Study: Investigators submitted a survey to the Society’s Northern California Chapter, who mailed it out to 11,400 people from its database who identified themselves as having MS. The survey included questions relating to demographics as well as questionnaires used to discern primary sleep disorders, sleepiness, fatigue severity, and sleep patterns.
Of 2,810 who responded (24.6%), 2,375 were included in the study. Of these, 70% screened positive for at least one sleep disorder. In total, 37.8% screened positive for obstructive sleep apnea, 31.6% for moderate to severe insomnia, and 36.8% for restless legs syndrome. Of these, only 4% (apnea), 11% (insomnia), and 12% (restless legs) reported being diagnosed by a health care provider with these sleep disorders. Thirty percent noted excessive daytime sleepiness. More than 60% reported an abnormal level of fatigue, and abnormal fatigue was associated with screening positive for a sleep disorder.
Conclusion: This study – the largest sleep study conducted to date in people with MS – adds to growing evidence of a high prevalence of sleep disorders experienced by people with MS, and highlights a potential link between MS fatigue and sleep disorders. The researchers conclude that identifying and treating sleep disorders experienced by people with MS could significantly improve quality of life.
"This study shows how important it is to think about what role sleep problems play in fatigue," says Nicholas LaRocca, PhD, Vice President of Health Care Policy for the National MS Society. "Discussing this with a healthcare provider can help people affected by MS to find solutions to sleep problems, and improve their daily lives."
“Dr. Weiner gave my family
and me reason to feel hopeful, inspiring us to do the same thing for others.
The Ann Romney Center is about empowering patients, convening world-renowned
scientists, and working together on new treatments and cures. We can do this."
The Ann Romney Center for Neurologic Diseases will transform the future of
medicine through novel forms of collaboration and patient-centered
research—within and outside its walls—that will lead to innovations and new
treatments, accelerating the search for cures for five of the world’s most
complex neurologic diseases.
To watch a video about the Ann Romney Center, click here
or on the image above.
For more information about the Ann Romney Center, click here.