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Friday, March 24, 2017

Pilot Study May Lead to Telemedicine Benefiting People with Multiple Sclerosis


                                                                  
  
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Telemedicine, which allows healthcare professionals to evaluate, diagnose and treat patients at a distance with telecommunications technology, may soon benefit people with multiple sclerosis (MS).
Elizabeth Morrison-Banks, MD, a health sciences clinical professor at the University of California at Riversi1de School of Medicine, is planning a pilot one-year study of a home-based telemedicine program for MS patients.
A $100,000 grant from Genentech is financing the project, which Morrison-Banks calls “Clinicians’ Online Neurology Network Empowering Communities through Telemedicine – Multiple Sclerosis (CONNECT-MS).”
“In 2015-2016, in collaboration with the Landon Pediatric Foundation, our research group developed a pilot telemedicine program for MS care funded by a Genentech research grant,” Morrison-Banks said in a news release. “While our preliminary data suggested that telemedicine is effective for and acceptable to patients with MS, outreach was limited by the complexity of scheduling visits to the general neurologists’ offices in coordination with simultaneous telemedicine consultations. We are therefore proposing a new home-based telemedicine program.”
As part of the project, Morrison-Banks and colleagues will randomize adults with MS to receive either telemedicine-based care or usual care.
A nurse practitioner will visit the telemedicine group’s homes, review their clinical history, and work with a neuro-immunologist who is on a telemedicine hook-up to perform a neurological analysis. The first stop at a patient’s home will be three to four weeks after the patient enrolls so the nurse can coordinate a telemedicine visit with Morrison-Banks. The privacy of such visits will be protected under the Health Insurance Portability and Accountability Act.
Researchers will compare the health of patients treated by telemedicine with those who received usual care. The variables they will examine include pain levels, fatigue, quality of life, visual impairment, sexual satisfaction, bowel control, bladder control, and mental health.
“The goal is to determine whether the home telemedicine approach works as well as usual care—that is, office visits with the neuro-immunologist,” Morrison-Banks said. “This is a pilot study and it may not be able to show whether MS telemedicine in patients’ homes is better than usual care, but if it appears to be equivalent – and if patients and families like it better because of its convenience and comfort – then the pilot study will provide useful preliminary data to guide larger research studies in the future.”

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Ocrevus and the Hope of ‘Ending MS Forever’: Interview with MS Society’s Tim Coetzee


                                                                  
  
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The potential approval of Ocrevus (ocrelizumab) this month supports the idea that, someday, a world free of multiple sclerosis (MS) is possible, according to Dr. Tim Coetzee, the National Multiple Sclerosis Society’s chief advocacy, services and research officer.
While Coetzee — and the society he represents — realize the potential of Ocrevus to improve MS treatment, both also acknowledge that plenty of work remains to be done to reach its goal of “ending MS forever.”
Tim Coetzee
Tim Coetzee (Courtesy, National Multiple Sclerosis Society)
Meanwhile, the society is working hard to make sure that the benefits Ocrevus may offer — if approved — will reach as many people as possible.
With the date for Ocrevus’ potential approval fast approaching, Multiple Sclerosis News Today spoke to Coetzee about how the possible therapy is viewed by the MS Society, its hopes and concerns, and work beyond Ocrevus.

Cautious optimism

“The idea of a treatment being approved for primary progressive MS is huge,” Coetzee said. Still, he and the society do not want to celebrate too soon, and are only cautiously optimistic that the U.S. Food and Drug Administration (FDA) will approve Ocrevus on March 28.
“Of course, you always have to be prepared for the unexpected — like the three-month delay in the agency’s decision late last year, but we certainly hope that doesn’t happen,” he added.
Ocrevus has been tested in three large global clinical trials: the two OPERA I and OPERA II trials (NCT01247324 and NCT01412333) in relapsing patients, and the ORATORIO (NCT01194570) study in people with primary-progressive MS. Researchers — both those involved in the trials and those not — consider the study data impressive.
Many patients also have high hopes for the treatment. According to Coetzee, relapsing MS patients are excited about the possibility of yet another, and possibly better, disease modifying treatment to choose from. And while primary progressive patients recognize that the treatment’s effect in clinical trials was modest — it is a huge step forward compared to no available treatment at all.1

“To have any option is a critical first step to addressing the challenges of treating progressive MS,” Coetzee said, but advised restrained optimism.
So while Genentech’s Dr. Peter Chin noted that Ocrevus “has the potential to change the way MS is treated,” Coetzee underscored the importance of seeing how the drug works in wider usage.


MS Views and News is MAKING an IMPACT on those affected by Multiple Sclerosis

Friday, March 17, 2017

Share YOUR ideas for MS Care


                                                                  
  
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Written by: Laura

Background:

Aaron Boster, MD, who happens to be my MS neuro, is the opening keynote speaker for CMSC 2017.  The Consortium for MS Centers annual meeting  (CMSC) has a strong patient focus rather than on research, and in talking about his speech, it becomes really clear there is a huge opportunity to infuse our voice  and ideas into his presentation.

His talk is titled The Comprehensive MS Center

Where he practices at Ohio Health,  all the services I might need are there.  If I see him and we decide I need OT, PT, social work, even a wheel chair fix – I can get it done there.  It’s a great concept but not widely available.  When a referral is written for me to have other things done, I don’t have to leave the clinic space – the group I am referred to comes to me.

As Dr. Boster presents to this audience of several thousand  MS clinicians  (doctors, nurses, social workers, therapists) about how he envisioned the comprehensive MS center at Ohio Health, he is looking for reflections from people with MS from around the country and even internationally, of what their experiences with ta comprehensive treatment  center might be like.  In other words - what works and what doesn’t work at various MS clinics.  This is not meant to be a critique of doctor styles or prescribing practices for drug treatment.

He would also like to include your picture (using your first name only, and the STATE you are in and not your city).   If you are not comfortable with using your picture, a substitute avatar for a patient would be used.  Imagine the impact on your own doctor sitting there and suddenly seeing  your face on the big screen and a quote about  the services you do or don’t receive. Talk about a way to grab their attention!! This is not meant to be a love fest or a chance to publicly shame neuros, but a real opportunity for us to use our presence to raise awareness of our clinical needs.  If you have an anecdote about your experience, that might also be useful/entertaining

To this end, I invite you to share a few brief thoughts.  The more people who participate in this activity, the greater the impact will be.  A few questions that are needed for the foundation of each patient quote are:

Your name (only first name will be use!)

Your state (or country)

Photo (if you are willing) – make sure it is a high quality resolution pic because when I say big screen, I mean BIG screen

Is your  MS doctor in a comprehensive clinic setting?   Yes or no

Optional: If it is not too sensitive, would you also share the name of your neurologist?  The name will NOT be used in the presentation but could be helpful in figuring out the status of their practice such as if it is an independent site or in an academic setting.

What would your ideal MS Comprehensive Center offer?

The following are just some of the topics you might reflect on in your comments as to how a comprehensive MS center might make your clinic experience better: Obviously  don't write about more than a couple and only a sentence or two will be used so don't over think this.
·         What do you like/dislike about how the clinic you attend is configured?
·         Are the services available to you in your MS clinic all you need or do you have to travel to other places?
·         How convenient is it in your area to get the services you need?
·         How often do you see your neurologist? Or do you see someone else such as the MS nurse?
·         If employed, how does taking time off of work to go to various referrals impact your job?
·         If parent of small children, how difficult is it to arrange childcare for your medical visits ?
·         When you get a referral for another service such as PT/OT, how long do you normally wait before you make contact or get in to see them?
·         Is the MRI lab in your clinic or do you have to travel somewhere else for MRIs?
·         What is missing from your clinic experience?
·         Is the clinic space easy to get to? Does the use of public transportation to come and go or the availability of valet parking for large clinics make a difference?
·         Are support groups or other meetings held at your clinic?
·         Are your phone calls handled quickly or do you leave messages and wait for return calls?
·         Anything else you might say about MS, and  the treatment you have available in your clinic.
·         In a perfect world, what would your clinic look like? I encourage you to think creatively – there may be something even Dr. Boster’s comprehensive center does not have……
·         Does your clinic have a way to find out what patients think, such as an advisory board? Would that be useful to your clinic?
I hope you see value in helping with this approach to an important and highly visible talk at CMSC and you will share ideas with me.  For two reasons, please send your photo and comments/quotes to my email at – (this is my blog email account and doesn’t get much mail and a good place I can be sure to gather your messages)


1)      I will de-identify your quotes if you wish to remain anonymous and your comments will even be blinded to Dr. Boster
2)      Dr. Boster has a major flaw and that is he doesn’t respond to emails efficiently, if at all.

Remember your thoughts may  be incorporated into a powerpoint presentation so they don’t have to be elaborate compositions. Thanks in advance and I look forward to getting your photos and thoughts. He will incorporate as many as possible into his talk. If you can do this quickly that would be great, but think about it and send it to me no later than April 4. 


Best,
Laura K.


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MSNewsToday Press Release 'MS Champions' Gala on April 22 in Florida


                                                                  
  
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   MS Views and News to Host 'MS Champions' Gala on April 22 in Florida
multiplesclerosisnewstoday.com
Read about the 2nd annual Champions Tackling MS Gala, a fund-raising event hosted by MS Views and News, taking place Saturday, April 22, in Davie, Florida.

MS Views and News, a non-profit multiple sclerosis (MS) advocacy organization, will host its second annual Champions Tackling MS Gala on April 22, with money raised going to support live educational events, community resources, and services intended to help improve the quality of life for people with MS.
The Saturday event at the Signature Grand hotel in Davie, Florida, starts at 6:30 p.m.
The evening kicks off with an open bar cocktail reception at which guests are encouraged to mingle and place bids for a silent auction. The reception will be followed by a dinner in the ballroom. After dinner and live auctions there will be an award ceremony, with the event capped by an evening of dancing to the sounds of Solid Brass.

Lauren Pastrana of CBS Miami will emcee this year’s gala. The evening’s honoree guests will be Dr. Aaron Boster, MD, a neuroimmunologost and director of the Ohio Health MS Center, and the former dentist turned fine art photographer Jon Evan Glaser, who was forced to retire from dental practice due to MS complications. Boster and Glaser’s respective advocacy and commitment to being Champions Tackling MS align with the evening’s theme.
Founded in 2008, MS Views and News is dedicated to the global collection and distribution of information concerning MS and provides a range of resources for the MS community locally, nationwide and worldwide.
Through partnering relationships, MS Views and News provides education, advocacy and service to empower and enhance the lives of people with MS, their families and caregivers. In 2016, it was able to facilitate more than 52 live educational programs and launched a local wheelchair donation program.
Stuart Schlossman
Stuart Schlossman
“MS Views and News has made it our focus to provide impactful education, information and services globally. The organization serves thousands of individuals via live educational programs, archived educational video recordings, e-newsletters, Wellness Workshops, a toll free helpline and Social Work services, all free of charge to the public,” said Stuart Schlossman, MS Views and News founder and president, in a press release provided to Multiple Sclerosis News Today. Schlossman has MS.
Tickets to attend the Gala are $100.00 per person ($95.00 if paid by March 29), or $1,000.00 for a table of 10. Sponsorship opportunities are available, including $20,000.00 Diamond Sponsor, $10,000.00 Gold Sponsor, $5,000.00 Silver Sponsor, and $2,500.00 Sponsor.
For ticket purchases and information on becoming a sponsor, contact  Jennifer at 786-514-3055 or jennifer@msvn.org, or visit: http://bit.ly/2mnHReN.

6 Common Symptoms of Chronic Fatigue


                                                                  
  
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If you suffer from a chronic illness like MS, then it’s highly likely that you’ll experience fatigue from time to time. Fatigue is different than just feeling tired, and generally it’s not something that can be fixed with an early night or by taking a little break.
With tips from the pros at prevention.com, we’ve put together a list of six ways that chronic fatigue can affect sufferers on a daily basis.
You feel extremely exhausted. 
Everyone experiences feeling tired and worn out from time to time but chronic fatigue takes this a step further. People will often avoid doing things they enjoy because they don’t have the energy to go out or even get off the sofa. Getting through a day at work or school will leave them feeling extremely exhausted as though they have gone through their energy reserves and have nothing left.
You can’t get a good night’s sleep. 
You would imagine that fatigue could be solved with sleep, but patients who suffer from chronic fatigue often have trouble falling asleep or wake constantly throughout the night. This lack of sleep (or disturbed sleep) only adds to the problem and makes the fatigue worse. Even if you do get to sleep, many find that they don’t feel any better when they wake up.
You can’t concentrate. 
Fatigue also affects people cognitively. Many find it difficult to concentrate, that they forget things, and are easily distracted. Brain fog is a common symptom associated with fatigue and many report being unable to communicate well, often not being able to find the right words when speaking or forgetting people’s names.
Simple tasks zap your emotional energy. 
Completing simple tasks when you have chronic fatigue can seem like climbing a mountain. As well as being physically taxing, fatigue can also be emotionally and mentally taxing. Stressful situations may have you feeling completely overwrought or agitated.
You can’t balance. 
Extreme fatigue can also cause balance issues. People often report feeling unstable when standing upright, which can be relieved by lying down. Although there is no proven reason for this sensation, it’s thought that it could be due to less blood flowing to the brain when a person is standing up.
You’re constantly in pain. 
Chronic fatigue can also bring about pains and aches. People with chronic fatigue are more likely to suffer from headaches, joint aches, and muscle soreness.
MS Views and News is MAKING an IMPACT on those affected by Multiple Sclerosis

Thursday, March 16, 2017

Biomarkers: The Future of Multiple Sclerosis Treatment?


                                                                  
  
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Researchers have unveiled studies that show the potential for biomarkers to identify certain types of MS, and perhaps the best treatments. 

biomarkers


Ancestry information, products for gut health, paternity tests.

One can pretty much mail order anything these days.

There are even companies that will analyze your blood without a doctor’s order. They provide blood chemistry and wellness tests based on the results. 

How long before a blood sample can provide information on what type of multiple sclerosis (MS) someone has, and also how to best treat it? 

Not long if clinical studies continue to show positive results with biomarkers and the potential benefits for people with MS.

Deciphering ‘snowflakes’

Biomarkers are genomic, metabolic, or lipidomic. They are used with blood tests, DNA/RNA sequences, and lipid analyses.
Recent research has shown biomarkers can be used to define MS in people, pinpoint the type of MS someone has, and provide possible hints to treatment and progression.
Biomarkers are not new.
The lumbar puncture that many people with MS receive will show a level of certain proteins, which can signal the presence of MS and help with diagnosis. But it is not enough.
MS is as unique as a snowflake. No two cases are the same, making diagnosis and treatment challenging.
If doctors could easily identify the illness, define the type of MS one has, and customize the treatment accordingly, then the patient’s chance of a healthier life is significantly higher.
In addition, people with MS could save money while fighting progression with the best medicine for their unique situation.

MS Views and News
Providing educational information, resources and services for those affected by MS, globally
MS Views and News is MAKING an IMPACT on those affected by Multiple Sclerosis

Wednesday, March 15, 2017

CHAMPIONS TACKLING MS


Join us on April 22nd 2017 as we celebrate Champions Tackling MS

 Supporting MS Views and News, benefits the education programs and social               services that we provide



Register online at: www.champions.msvn.org 


Researchers make major brain repair discovery in fight against Multiple Sclerosis


                                                                  
  
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Date:
March 14, 2017
Source:
Queen's University, Belfast
Summary:
Scientists have discovered that specific cells from the immune system are key players in brain repair – a fundamental breakthrough that could revolutionize the treatment of debilitating neurological disorders such as Multiple Sclerosis (MS)
Queen's University Belfast scientists have discovered that specific cells from the immune system are key players in brain repair -- a fundamental breakthrough that could revolutionise the treatment of debilitating neurological disorders such as Multiple Sclerosis (MS).
The research study, led by Dr Yvonne Dombrowski and Dr Denise Fitzgerald at the Wellcome-Wolfson Institute for Experimental Medicine at Queen's University Belfast, is being hailed as a landmark study in unravelling the mysteries of how the brain repairs damage. This is crucial in the fight against MS, which affects 2.3 million people world-wide and over 4,500 people in Northern Ireland.
Read more



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Clinical Test of Rex Robotic Device as Rehabilitation Aid for MS Patients Starting in UK


                                                                  
  
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Clinical Test of Rex Robotic Device as Rehabilitation Aid for MS Patients Starting in UK
A clinical test of whether bionic robotics can improve mobility in people with relapsing or progressive forms of multiple sclerosis (MS) and considerable disability is now recruiting participants, after being approved by the U.K. National Health Service’s Health Research Authority (HRA) ethics committee.



The trial, called RAPPER 3 (Robot Assisted Physiotherapy Exercises with Rex III), will be conducted at the Canterbury site of the East Kent Hospital’s University Foundation Trust (EKHUFT), and is expected to begin the first of 10 patient evaluations on April 19.
It will evaluate the feasibility and safety of using Rex Bionics‘s REX robot exoskeleton device as a hands-free rehabilitation aid for people with MS who have moderate to severely restricted mobility. The trial aims to have each patient complete a four-week “transfer, stand, balance, and walk” rehab program, and demonstrate better strength, improved balance and balance-related skills, and walking ability. Secondary trial goals include improved Multiple Sclerosis Walking scale (MSWS-12) and the Multiple Sclerosis Impact scale (MSIS-29) scores.


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MULTIPLE SCLEROSIS PATIENTS WAIT ON NEW DRUG


                                                                  
  
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Tuesday, March 14, 2017 09:54PM
SAN FRANCISCO (KGO) -- On a good day, watching Sarah Warto climb the stairs you might not guess that she suffers from multiple sclerosis. But shortly after the birth of her daughter, 2.5 years ago symptoms kicked in.

"It effected my ability to walk. That was probably the biggest issue for me because as the mother of a newborn child all I wanted to do was get up and run around after her," Warto said.

Now, she's waiting on the potential approval of a new drug that could change the course of her disease, and possibly her life.

Stephen Hauser, M.D. of UCSF helped oversee testing of the drug.

It was developed by Bay Area-based Genentech, and it's clinical name is Ocrelizumab.

Hauser says it was able to disrupt symptoms in the less severe form of multiple sclerosis, called relapsing. "Ocrelizumab has been able to nearly completely stop disease activity in people with relapsing and remitting forms of Multiple Sclerosis," Hauser said.

He says it was even able to reduce symptoms from the much more damaging form of the disease called progressive, which can ultimately rob patients of the ability to move on their own. "So for people with relapsing MS this is spectacular news. And for people with progressive MS the door is finally open," Hauser said.

CONTINUE






MS Views and News
Providing educational information, resources and services for those affected by MS, globally
MS Views and News is MAKING an IMPACT on those affected by Multiple Sclerosis