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Saturday, March 5, 2016

MS Gait Analysis Identifies 2 New and Highly Sensitive Markers of Disability and Fatigue

Researchers analyzing gait in people with multiple sclerosis (MS) using wearable inertial sensors have established two new and highly sensitive observer-independent measures of disability that strongly correlate with fatigue and patient-perceived health status. Their article, titled “Disability and Fatigue Can Be Objectively Measured in Multiple Sclerosis,” was published in the journal PLOS ONE.
Disability assessment is crucial in MS, being both a primary endpoint in disease research and a therapeutic target in clinical practice for disease management. Appropriate outcome measures are essential to accurately determining if an intervention under evaluation is actually modifying the disease, and, in the clinic, for tracking MS progression and the suitability of treatment.
But disability can be difficult to define and measure in patients, and current measures are not sufficiently responsive and sensitive. Moreover, discrepancies exist between a patient’s and a clinician’s perceptions of the impact of fatigue and disability on performance.
The research team investigated the feasibility of inertial sensor-based gait analysis in MS. The study included 80 MS patients, 56 with relapsing-remitting MS (RRMS) and 24 with progressive MS, and 50 healthy controls. Clinical disability was assessed through the Expanded Disability Status Scale (EDSS) and timed 25 Foot Walk (T25FW), which measures the time necessary for a patient to walk 25 feet at maximum speed. Gait analysis was performed by using a commercially available magnetic inertial measurement unit system, seven wireless MIMUs (Xsens MTw, Xsens Technologies, Enschede, The Netherlands) placed on the pelvis, and the thigh, shank, and foot of both legs. Researchers then recorded two measurements in a one-minute walking test, and mean and standard deviation of range of motion (ROM), or mROM and sROM, respectively.
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Using a virtual reality system to improve balance for those with multiple sclerosis

The Journal of NeuroEngineering and Rehabilitation has published researchlooking at the use of virtual reality to help patients with multiple sclerosis maintain their balance, a common issue for those with the disease. Co-author Alon Kalron explains more.

What is multiple sclerosis?

Multiple sclerosis (MS) is one of the most common diseases of the central nervous system (brain and spinal cord). Healthy nerves are coated in a fatty casing (called the myelin sheath) which helps messages to travel quickly and smoothly along nerves.
When a person is suffering from MS, the immune system, which normally helps to protect against infection, attacks the myelin sheath, stripping it from the nerves (demyelination).
This demyelination means that messages cannot travel along the nerves effectively, causing a range of disabilities like muscle weakness, walking difficulties, fatigue, thinking problems, numbness and blurred vision.

Helping MS patients with their balance

Many people suffering from MS suffer from problems with balance. The aim of this study was to look at the effects of training with a new virtual reality system on balance in people with MS and compare it with traditional physical therapy. The study was performed in the Sheba Multiple Sclerosis Center and the Center of Advanced Technologies in Rehabilitation at Tel-HaShomer, Israel.

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Biotin (Cerenday) for primary and secondary progressive multiple sclerosis - first line NIHR HSRIC

Record Status
This is a bibliographic record of a published health technology assessment. No evaluation of the quality of this assessment has been made for the HTA database.
Citation
NIHR HSRIC. Biotin (Cerenday) for primary and secondary progressive multiple sclerosis - first line. Birmingham: NIHR Horizon Scanning Research&Intelligence Centre. Horizon Scanning Review. 2015
Authors' objectives
Cerenday (biotin) is a high dose oral formulation of biotin, a water soluble vitamin that acts as a coenzyme for carboxylases involved in key steps of energy metabolism and fatty acid synthesis. Very high doses of biotin may be efficacious in multiple sclerosis (MS) by promoting myelin repair through activation of acetyl-CoA carboxylase, and by enhancing energy production in demyelinated neurons through activation of the tricarboxylic acid (Kreb's) cycle. Biotin is intended for the treatment of primary and secondary progressive MS and is administered orally at 100mg three times daily for up to 24 months. MS is a chronic immune-mediated condition of the central nervous system characterised by demyelination and axonal degeneration. Resultant damage leads to a wide spectrum of symptoms and signs, potentially including difficulties with weakness, sensory disturbance, balance and vision. The prevalence of MS in England is approximately 0.16%, equivalent to approximately 85,600 affected people. Primary progressive multiple sclerosis (PPMS) affects about 10-15% of people diagnosed with MS, which equates to between 8,560 and 12,840 patients in England. Approximately 35.5% of patients diagnosed with MS have relapsing-remitting disease. This equates to around 30,388 people in England. However, after two decades, more than half of patients who suffer from relapsing-remitting multiple sclerosis (RRMS) enter a secondary progressive phase. In 2013-14 there were 44,335 admissions for MS in England, resulting in 53,554 bed days and 46,584 finished consultant episodes. In England and Wales, 1,100 deaths due to MS were registered in 2013. Biotin is currently in two phase III clinical trials assessing its effect compared with placebo on disability and visual acuity respectively. Both trials are expected to be complete by March 2016.
complete information found here





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MS SMART -Multiple Sclerosis - Secondary Progressive Multi-Arm Randomisation Trial






Update 1st April 2015 MS-SMART has started and recruitment into the trial will continue through 2015. Two centres are currently open and all centres taking part will be open soon.
Multiple sclerosis (MS) is a disabling and progressive neurological disease that affects approximately 100,000 people in the UK. The secondary progressive (SPMS) stage of disease results not in individual attacks but slow, cumulative and irreversible disability affecting walking, balance, vision, cognition, pain control and bladder and bowel function. Critically, and unlike early disease, there is no proven treatment for the late stage of MS. This is therefore an urgent and major unmet health need.

MS-SMART will test 3 drugs (riluzole, amiloride and fluoxetine) in 440 people with SPMS. The drugs were selected from a group of medicines that are used to treat other conditions and show promising signs in the treatment of MS (in particular SPMS). Amiloride is used to treat heart disease, fluoxetine (depression) and riluzole (motor neurone disease).
It will take approximately one year to screen and recruit people into the trial. Participants will take one of the drugs OR a placebo pill (a dummy pill) for two years. No one will know which treatment they are taking while the trial in on-going. ‘Blinding’ as this is known is widely used in clinical trials and ensures the results of the trial are not subject to bias. During the trial participants will have a number of clinic assessments and Magnetic Resonance Imaging (MRI) scans.

Listed below is the MAIN criteria for taking part in the MS-SMART trial. A detailed screening process is required to make sure the trial is suitable and safe for someone to take part in.
ü Secondary Progressive MS
ü Not on DMT (Disease Modifying Treatment)
ü Not taking a SSRI (Selective Serotonin Re-uptake Inhibitor), a type of anti-depressant
ü Still able to walk at least 20 metres (with the support of 2 crutches) or up to 500 metres without help
ü Aged 25-65 (inclusive)





Please note that MS-SMART is an academically led trial. It is not an international trial and recruitment can only take place in the UK.


How is MS-SMART funded?The MS-SMART trial is independent research awarded by the Efficacy and Mechanism Evaluation Programme (EME), a partnership between the Medical Research Council (MRC) and the National Institute for Health Research (NIHR), along with the Multiple Sclerosis Society (MS Society) and managed by the National Institute for Health Research (NIHR) on behalf of the MRC-NIHR partnership. MS-SMART is an investigator led project sponsored by University College London (UCL). Additional support comes from the University of Edinburgh and the National Institute for Health Research University College London Hospitals Biomedical Research Centre. Sanofi is supporting the study by donating the supply of riluzole for the trial.

If you're interested in finding out about the trial, and whether it might be suitable for you, why not let us know?


Clinical staff will be in contact with you to discuss the trial in more detail as soon as they can. It will take several months to contact everyone interested in the trial because there has been huge interest in the trial. We are extremely grateful to everyone who has contacted us already.
Progress about the trial will be updated on this website.





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Can drinking lots of coffee lower risk for MS?

In this case, a new study in the Journal of Neurology Neurosurgery & Psychiatry suggests being a java drinker may lower the risk for multiple sclerosis (MS).
Researchers in Sweden and at Johns Hopkins University, in Baltimore, analyzed data from two studies and found that the risk of MS, a potentially disabling disease of the nervous system, was higher in adults who downed fewer cups of coffee every day.
The studies in the analysis included one from Sweden, involving 1,620 adults with MS and a comparison group of 2,788 healthy people, and a U.S. study including 1,159 people with MS and 1,172 healthy people.
The results showed that in the Swedish study, coffee consumption was associated with a reduced risk of MS, with a 28 to 30 percent lower risk among people who consumed more than six cups of coffee a day. Risk was lower among people who drank more coffee at the time symptoms started and those who drank more five and 10 years beforehand.
The U.S. study showed similar results, with a 26 to 31 percent lower risk for MS among people who drank more than six cups a day at least five years beforehand, and at the start of symptoms, compared with those who never drank coffee.
The more coffee a person consumed, the lower their risk for MS, the researchers reported.

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What My Mom's Multiple Sclerosis Has Taught Me

I administered my first drug injection when I was eight. My mom usually assigned the job — not typically intended for third graders — to either my firefighter father or my then 15-year-old big sister, Ashley. But on this occasion, my dad was away on a 24-hour shift, Ashley was at track practice, and my mom lacked the strength needed to grasp her needle. I was the last Schubert standing, and this day-to-day drill was a crucial part of the treatment for my mother’s multiple sclerosis; an unpredictable and incurable disease that attacks the central nervous system, and has plagued my mom since she was 18 years old.
Without faltering, my tiny hands picked up the syringe that housed 20-milligrams of Copaxone, and held it hovering over my mom’s left thigh, already speckled in purple, blue, and black, splotchy bruises from months of this daily routine.
“Is this the right spot?” I asked nervously.
“That’s perfect, Twinkle Toes,” my mom replied. “Don’t worry. I won’t feel a thing.”
I don’t want to call my mom’s MS a “blessing in disguise,” because that seems a bit selfish. But I would undoubtedly say that my mother’s unfortunate condition has taught both me and the rest of my family a great deal about happiness and the uncertainty of life.
March is National MS Awareness Month: a time to raise awareness of this crippling disease and support people like my mother 




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Wednesday, March 2, 2016

The 2016 Champions Tackling MS Awards Gala

           
                        Click to play this Smilebox announcement



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ActiveMSers - Celebrating a DECADE

I would like the many who may not know Dave,  to know about this guy named Dave. Often humorous and always keeping Active



March 2016

Dave basicTen years ago today, March 2, 2006, I started ActiveMSers, eight days before I was officially diagnosed. I wanted a welcoming place that would champion our successes with this disease and motivate others to stay active physically, intellectually and socially regardless of disability. Today, nearly a half million MSers have found us from an unbelievable 207 countries (I know there are currently only 196 countries, so a few have gone away, and a few have joined in the past 10 years). And you pay attention and actively contribute to this MS community of misfits--over 7,600 posts on our forum with 5 million views! 

This website would be a shell without your enthusiastic participation and support, and I am deeply humbled every day. Saying thank you doesn't begin to express my gratitude. Know that if my name were Oprah, you'd all be getting a car. YOU GET A CAR, AND YOU GET A CAR! But it's just Dave, so you are stuck with an e-mail that doesn't even have a sunroof or cruise control. Sorry. That said, buckle up for this next edition, it's a goodie (especially compared to our very first one, republished here for old times sake).






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Tuesday, March 1, 2016

Multiple Sclerosis Clear Guide


Multiple Sclerosis Really CLEAR GUIDE





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MSVN Tribute to MS Awareness Month




WE ARE THE CHAMPIONS because we know how to FIGHT!

                   Click to play this Smilebox slideshow


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MS Views and News 
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Keep current with Multiple Sclerosis news and information 
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Monday, February 29, 2016

• MS Gait Analysis Identifies 2 New and Highly Sensitive Markers of Disability and Fatigue


Researchers analyzing gait in people with multiple sclerosis (MS) using wearable inertial sensors have established two new and highly sensitive observer-independent measures of disability that strongly correlate with fatigue and patient-perceived health status. Their article, titled “Disability and Fatigue Can Be Objectively Measured in Multiple Sclerosis,” was published in the journal PLOS ONE. Disability assessment is crucial in MS, 

Read on »



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Effects of Single Bouts of Walking Exercise and Yoga on Acute Mood Symptoms in People with Multiple Sclerosis

Article Citation:
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Ipek EnsariEdMBrian M. SandroffMSRobert W. MotlPhD
From the Department of Kinesiology and Community Health, University of Illinois at Urbana-Champaign, Urbana, IL, USA.
Correspondence: Robert W. Motl, PhD, University of Illinois at Urbana-Champaign, 906 S. Goodwin Ave., Urbana, IL 61801; e-mail: .

Background: Little is known about the acute or immediate effects of walking exercise and yoga on mood in people with multiple sclerosis (MS). Such an examination is important for identifying an exercise modality for inclusion in exercise-training interventions that yields mood benefits in MS. We examined the effects of single bouts of treadmill walking and yoga compared with a quiet, seated-rest control condition on acute mood symptoms in MS.
Methods: Twenty-four participants with MS completed 20 minutes of treadmill walking, yoga, or quiet rest in a randomized, counterbalanced order with 1 week between sessions. Participants completed the Profile of Mood States questionnaire before and immediately after each condition. Total mood disturbance (TMD) and the six subscales of the Profile of Mood States were analyzed using repeated-measures analysis of variance and paired-samples t tests.
Results: There was a significant condition × time interaction on TMD scores (ηp2 = 0.13). Walking and yoga conditions yielded comparable reductions in TMD scores. There was a significant condition × time interaction on vigor (ηp2 = 0.23) whereby walking but not yoga yielded an improvement in vigor. There was a significant main effect of time on anger, confusion, depression, and tension (P < .05) but not on fatigue.
Conclusions: Walking and yoga yielded similar improvements in overall acute mood symptoms, and walking improved feelings of vigor. These effects should be further investigated in long-term exercise-training studies.
Read more



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AWESOME!!!! Biogen’s ‘1MSg Campaign’ Encourages MS Patients to Better Manage Their Disease, Engage with Specialists

1MSg = One Message


Biogen is launching an initiative developed with the assistance of clinical experts — the 1MSg campaign — to educate and encourage multiple sclerosis (MS) patients to make disease management decisions that are well-informed and based on the latest scientific research.
The campaign’s motto is “Take control, known your choices,” and one of its main objectives is to highlight the benefits of regular and quality medical supervision by MS specialists. The campaign’s website includes educational materials, which will also be distributed in general practitioner (GP) offices and MS centers around the U.K., and videos from leading MS specialists.
This proactive campaign is a response to a survey, conducted by Opinion Health on behalf of Biogen, that asked 100 neurologists and nurses about MS patients’ behavior and disease management habits. Results found that a full 93 percent of MS health professionals believe too few patients are taking advantage of available MS services, and missing out on access to new medicines, symptom control, and holistic services.
The poll also revealed that 97 percent believe that some patients could benefit from reconsidering how they are managing their condition in light of the most recent developments in MS therapy and management. Moreover, according to seven in 10 specialists, people with MS are discouraged from maintaining and seeking contact with disease specialists and services because of a lack of understanding about the clinical consequences of not being proactive with their disease.
CLICK to: Read more

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Sunday, February 28, 2016

Multiple sclerosis fatigue can be managed successfully: Study


multiple-sclerosis-fatigue-can-be-managed-successfully
Multiple sclerosis fatigue can be successfully managed, according to research studies. Fatigue is a common complaint among multiple sclerosis (MS) patients and, unfortunately, it can negatively impact a person’s life. This is why it is so important to properly manage MS fatigue in order to improve quality of life and overall health.







Dr. Sarah Thomas, Professor Peter Thomas, and colleagues created a group-based fatigue management program for multiple sclerosis patients called FACETS (Fatigue: Applying Cognitive behavioral and Energy effectiveness Techniques to lifeStyle). Patients are provided with tools and strategies in order to properly manage their energy and explore different ways to think about fatigue.
The program is conducted through weekly sessions, facilitated by two health care professionals.
FACETS was evaluated and tested by dividing patients into two groups: those who attended FACETS and those who received routine care. The FACETS group had greater improvements in fatigue severity after a four-month follow-up, compared to the routine care group. Overall, the researchers received positive and overwhelming feedback from those in the FACETS group, not only about their enjoyment, but how they would recommend it to others, too.
Across the United Kingdom, health care professionals are cautiously becoming trained in the FACETS course in order to administer it to their own patients increasing the access and availability of the program


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