January 22, 2019 News by Alberto Molano, PhD Controlling Spasticity Would Greatly Improve Everyday Quality of Life, Survey Shows An international survey of caregivers and adults with neurological diseases, including multiple sclerosis (MS), revealed that spasticity is a hidden burden, having a negative effect on the ability to perform everyday tasks, and that relieving its symptoms significantly improves patientsā quality of life. The survey was presented by…
January 21, 2019 News by Jonathan Grinstein Fatigue More Common in Progressive MS Patients, Survey Shows Fatigue is more prevalent among patients with progressive multiple sclerosis (MS), according to a study that surveyed patients on fatigue and factors related to it. In addition, increased fatigue severity correlated with greater physical, cognitive, and psychological impairment, although the strength of this link was largely the same…
December 21, 2018 Columns by Ed Tobias Shots, Infusions, or Pills for Your MS? There are more than a dozen disease-modifying therapies available to treat MS. Some are shots, some are infusions, and some are pills. Some are more effective than others. The marketing intelligence company Spherix Global Insights regularly surveys which of these treatments are being used by neurologists and…
December 14, 2018 News by Santiago Gisler MS Patients Report Beneficial Effects of Cannabis With Few Side Effects, Survey Shows Many multiple sclerosis (MS) patients report that cannabis has beneficial effects on their symptoms with minimal side effects, according to a survey that also showed that varying effects on health may be due to differences in how users consume cannabis. Findings from the survey were reported in the…
November 9, 2018 News by Alberto Molano, PhD Study Highlights Need for Better Engagement Between MS Patients and Healthcare Providers Multiple sclerosis (MS) relapses can be challenging for some patients, and better engagement is needed between patients and their healthcare providers, a study focused on patient experiences has found. The study, titled āRelapse prevalence, symptoms, and health care engagement: patient insights from the Multiple Sclerosis in America 2017 survey,ā…
October 18, 2018 News by Alice MelĆ£o, MSc #ECTRIMS2018 – Role of Brain Atrophy in MS Progression Poorly Understood by Patients, MSAA Survey Finds Although brain atrophy ā the loss of brain volume ā is an increasingly important measure in multiple sclerosis trials and treatment outcomes, MS patients have a limited understanding of its role in disease progression,Ā a survey reveals. This finding was detailed in the presentation ā…
August 28, 2018 Columns by Ed Tobias Help Design a Mobility Scooter I’ve been using a mobility scooter for about 10 years. I use it anytime I need to walk more than about half a city block. I throw it in the back of my SUV, I’ve taken it on planes and cruise ships (I’ve ridden it in 15 or 16…
June 8, 2018 News by Alice MelĆ£o, MSc Mobility Devices for People Who Have Lower-Limb Paralysis are Flawed, Online Survey Reveals More investment and new technological developments are needed to assist people who have limited mobility because of lower-limb paralysis. That was the major conclusion of an international study undertaken by ComRes on behalf of the Toyota Mobility Foundation. Around the world, millions of people have lower-limb paralysis. In…
April 16, 2018 News by Patricia Inacio, PhD Adverse Effects Influence Patient’s Perspective of Ocrevus’s Effectiveness, Survey Shows Higher rates of adverse effects have a negative impact on a patient’s perspective about treatment with Ocrevus (ocrelizumab),Ā according to aĀ survey conducted by the multiple sclerosis communityĀ GeneFo. About half of the 840 patient responses surveyed so far have reported improvements from Ocrevus. Those reporting none had a higher rate…
April 2, 2018 News by Diogo Pinto MS Patients Are Among the Most Satisfied with Their Healthcare, Surveys Show Multiple sclerosisĀ patients are among those with debilitating diseases who are most satisfied with their healthcare, two surveys indicate. Others who are satisfied include people withĀ amyotrophic lateral sclerosisĀ and Parkinsonās, according to the questionnaire-basedĀ PatientsLikeMeĀ research. In contrast, people with fibromyalgia, post-traumatic stress disorder (PTSD) and major depressive disorder…
March 15, 2018 News by Patricia Inacio, PhD New Spherix Report Finds PPMS Treatment Increased Significantly in Past Year Since Genentech‘sĀ OcrevusĀ was approvedĀ a year ago, the treatment rate of primary progressive multiple sclerosis (PPMS)Ā has increased significantly. However, a closer look at the data shows that other disease-modifying therapies (DMTs) are equally responsible for this increase. The findings were reported byĀ Spherix Global InsightsĀ in their new study…
December 27, 2017 News by Marta Figueiredo, PhD U.K. Survey Supports Likelihood of Link Between Chicken Pox-Shingles Virus and MS A large U.K. survey assessing the frequency of chickenpox and shingles in multiple sclerosis (MS) patients suggests a link between these diseases and MS, researchers report, suggesting their findings could help in decisions regardingĀ immunosuppressive treatments andĀ varicella-zoster virus vaccinations. Results of the study āPrevalence of a history of…
December 15, 2017 News by Patricia Silva, PhD Ocrevus’ Use Continues Rising, with RRMS Patients Receiving the Most Attention U.S. neurologists are increasingly prescribing Genentech’s Ocrevus (ocrelizumab) to their multiple sclerosis patients, Spherix Global InsightsĀ reports. Another good sign for Genentech is that, in just three months, neurologists have increased by 50 percent their estimate of the numbers of relapsing-remitting MS patients who could benefit from Ocrevus.
November 17, 2017 News by Alice MelĆ£o, MSc Nurses, Physicians’ Assistants Prescribe Antibody-based Therapies More Than Neurologists, Survey Shows U.S. nurses and physicians’ assistants prescribeĀ antibody-based disease-modifying therapies to their multiple sclerosis patients more than neurologists do, a survey indicates. The trend has been for the doctors to stick with interferon therapies, the study said. Antibody-based disease-modifying therapies are also known as monoclonal antibodies. They are designed to harness the…
November 9, 2017 News by Marta Figueiredo, PhD Survey Helps Improve Communication Between Women with MS and Healthcare Providers A national survey in the U.S. revealed that 98% of women newly diagnosed with multiple sclerosis struggle to discuss important personal concerns with their healthcare team.
November 1, 2017 News by Alice MelĆ£o, MSc #MSParis2017 ā MS Places Heavy Burdens on Women, Study in 8 European Countries Shows Multiple sclerosis (MS) can have severe implications on the lives of European women with the disease, finds a new report, affecting their education, their careers and their relationships. This disproportionate burden of MS in women versus men was the focus of a study, āThe Socioeconomic Impact of…
October 5, 2017 News by Patricia Silva, PhD Can iPhone App Grasp the MS Experience? Duke Study Wants to Find Out Researchers at Duke University want to determine if data collected through an iPhone app can ably capture individual experiences in people with multiple sclerosisĀ to improve doctor-patient communication and overall disease understanding. According to a National MS Society report, the researchers want to investigate the benefits combining mobile phone-based data with machine learning (the ability of a smartphone to mimic human behavior) and patient participation. The study is currently enrolling MS patients, 18 or older, live in the United States and be able to read and understand English. Participants must own or have daily access to an iPhone (iOS 9 or greater) to download a free, MS Mosaic app from the Apple Store. The app is not yet available for Android phones. The rationale behind the study is that MS can be an extremely complex condition, with symptoms ranging from numbness, walking difficulty, to vision impairment and fatigue. Each patient's experience is different and can be affected by medication, emotional health, and environmental factors. This complexity can complicate research. Study participants will receive daily, weekly and monthly questionnaires to fill about their symptoms. Daily surveys should take no longer than a minute to complete, and weekly surveys about ten minutes. Initial registration should take about 20 minutes, the NMSS report says. In some of the surveys, participants will be asked to perform specific tasks while holding or using the mobile phone, like walking 25 steps, turning around, then walking back 25 steps ā while holding the phone. Other tests include tapping on the phone screen repeatedly to test motor speed, coordination and fatigue, or playing a pattern game to assess short-term memory. These tasks should take about five minutes each. Patients can choose not to answer some of the questions or to participate in certain tasks. All information is collected through the app, and will be sent to a secure data server. Participants can export data to share with a healthcare provider. Each person will be identified by a code, and data will be analyzed in a way that maintains confidentiality. Researchers, however, be able to identify a participant should they need to do so for "research integrity or legal purposes," the report states. Questions regarding this study can be answered by sending an email toĀ [email protected].
October 2, 2017 News by Ana Belo van Wijk, PhD MS Patients with Poor Diets, Little Exercise Report Higher Pain Levels in Study A clear association was seen between the substantial pain that multiple sclerosis (MS) patients experience and lifestyle choices that either augment or ease that pain, like smoking habits, exercise, and diet and weight, researchers in Australia report. Common co-morbidities associated with MS, such as depression, anxiety, and fatigue, were also…
September 6, 2017 News by Janet Stewart, MSc Older Women with MS Age Better Than Their Male Counterparts, Canadian Survey Finds Older men with multiple sclerosis (MS) have more harmful lifestyles than older women with the disease, concludesĀ theĀ Canadian Survey of Health, Lifestyle and Aging with Multiple Sclerosis. Treatment for depression could go a long way to promoting more healthy lifestyles for all older MS patients, authors suggest. The study, ā…
September 5, 2017 News by Iqra Mumal, MSc MS Society of Canada Creates ‘Wellness Toolbox’ to Help Patients Manage Their Disease The Multiple Sclerosis Society of Canada ā with input from both experts and patients ā has developed a "wellness toolbox" with strategies to help multiple sclerosis (MS) patients cope with their disease. Wellness is becoming a big area of research, particularly in patients with chronic diseases such as MS. With an estimated 291 cases per 100,000 inhabitants in 2013, according to the Multiple Sclerosis International Foundation, Canada has the world's highest incidence of MS. While pharmaceutical and scientific research are advancing in the therapeutic area, studies are also underway to determine the contribution of wellness factors such as nutrition, physical activity and emotional well-being -- to quality of life for MS patients. With that in mind, the Toronto-based MS Society of Canada conducted a Wellness Survey, which led to the launch of the HermĆØs Canada | MS Society Wellness Research Innovation Grant. These grants are awarded to scientists conducting research on MS and wellness factors. The University of Saskatchewan, which received one such grant in 2016, investigated the effect of Pilates in people with MS. The study recruited 30 MS patients. Half took Pilates classes twice a week and massage therapy once a week, while the other half only did once-a-week massage therapy. Results showed that patients who took Pilates classes saw an improvement in their overall condition, compared to patients in the control group. To create its wellness toolbox, the MS Society of Canada received input from MS patients about strategies that have helped them manage the disease and live a full life.
July 28, 2017 Columns by Ed Tobias MS Therapies: What’s Hot, What’s Not Ocvevus (ocrelizumab) is off to a running start, Tecfidera (dimethyl fumarate) leads the pills and the four injectable multiple sclerosis drugs are being used by fewer MS patients. But Copaxone (glatiramer acetate injection) remains the leader of the pack of the disease-modifying therapies. Those are…
July 19, 2017 News by Joana Fernandes, PhD GeneFo to Host July 26 Webinar on Sex and Intimacy Issues by MS Advocate Tuppy Owens GeneFo,Ā an online multiple sclerosis (MS) community that offers support, advice and educational resources to patients, will conductĀ a free webinar July 26 for those interested in knowing more about how MS affects sex and intimacy. The webinar, hosted by renowned MS expert Dr. Tuppy Owens,Ā follows a GeneFoĀ survey showing that sex…
July 18, 2017 News by Patricia Silva, PhD Quarter of MS Patients in UK Not Aware of Disease-modifying Treatments, Online Survey Reports A recent patient survey reveals that almost one in four people with multiple sclerosis in the U.K. are not aware of available treatments that could help delay the onset of disability, even though a clear majority put disability as a chief worry. TheĀ report, fundedĀ byĀ Sanofi Genzyme,Ā was conducted by Adelphi…
June 7, 2017 News by Patricia Silva, PhD Bringing More Minority MS Patients into Research Is Project’s Goal, Starting with 15-Minute Survey The MS Minority Research Engagement Partnership Network is calling for all multiple sclerosis (MS) patients, ages 21 and older, to respond to a 15-minute online survey. Investigators are hopingĀ to better understand how people with MS from different ethnic backgrounds and races viewĀ medical research, so as to engage them in…
June 1, 2017 News by Patricia Silva, PhD EMD Serono Launches MS Care Partner Survey with IACO to Honor May 31, World MS Day 2017 ToĀ honor World MS Day, May 31,Ā EMD SeronoĀ launched a multiple sclerosis care partner survey in collaboration with the International Alliance of Carer Organizations (IACO). The new survey comes after the initial results from aĀ MerckĀ studyĀ showed that the highest number of MS care partners are aged 18-34, and that…
May 31, 2017 News by Joana Fernandes, PhD #CMSC17 – Many Caregivers of MS Patients Say the Disease Exhausts Them Physically and Emotionally Most people who care for multiple sclerosis (MS) patients are happy to be caregivers, but they admit that their own emotional and physical health ā as well asĀ their financial security ā suffer as a result. That’s according to the online vsMS Survey, supported by Sanofi Genzyme, which assesses theĀ physical…
May 26, 2017 News by Patricia Silva, PhD #CMSC17 – MS Patients Should Contribute to Outcome Measure Development, Study Argues Patients must help develop new outcome measures of multiple sclerosis (MS), since theyĀ and healthcare providers may have differing perceptions of how crucialĀ various measures are, a new study argues. Researchers from the Multiple Sclerosis Center of AtlantaĀ shared this insight today at the Consortium of Multiple Sclerosis Centers (CMSC) 2017 Annual…
March 21, 2017 News by Patricia Silva, PhD Physician Assisted Suicide’s Appeal to MS Patients in Unbearable Pain Highlights Urgency in Treating Depression Half of the more than 7,500 multiple sclerosis (MS) patients responding to a recent survey revealed they’dĀ consider physician-assisted suicide if they could no longerĀ enjoy anything that made life worth living. In addition, 65 percent of respondents said they’d definitely or probably let a physician terminate their lives if they were…
February 7, 2017 News by Patricia Silva, PhD 95% of MS Patients Open to Marijuana Treatment, 73% Have Tried It Ninety-five percent ofĀ multiple sclerosis (MS)Ā patients believe medical marijuana should be a treatment option, according to aĀ GeneFoĀ online survey. The survey also showed that almost 73 percent had tried it, even though about half said they hadn’t received information from a doctor about its benefits and risks. A National…
February 3, 2017 News by Patricia Silva, PhD How MS Patients Judge Their Treatments Differs from Doctors’ Views, Study Reports Considerable differences exist in how multiple sclerosis patients, healthcare providers and insurance companies assess the value of current MS treatments, according to a literature review study by the data analysis firmĀ Real Endpoints. ForĀ the study, a team of clinicians and researchers looked at more thanĀ 300 research articles, covering topics like…