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Saturday, October 31, 2009

Biogen Idec Releases Update On Tysabri And PML

October 29, 2009

According to information released yesterday by Biogen Idec, there have been 24 confirmed cases of progressive multifocal leukoencephalopathy (PML, a viral infection of the brain that usually leads to death or severe disability) among people who have used Tysabri® (natalizumab, Biogen Idec and Elan Pharmaceuticals) after it became available for prescription in July 2006.

As of the end of September 2009, 60,700 people have used Tysabri worldwide. Although the absolute risk for PML in patients treated with Tysabri cannot be precisely determined, the sponsor has now released data suggesting that the risk increases with increasing time on therapy, starting out lower than the one-in-one thousand level that was estimated at the time of Tysabri’s re-approval in 2006, and rising after two years of infusions to about one in one thousand. There is insufficient information to determine the risk of PML in those who have been on therapy for three years or more. Right now only 2,000 people have been on the therapy for over three years.

This release followed an October 23 announcement from the EMEA, the European equivalent of the U.S. FDA, indicating that one of its advisory committees was launching a review of the risks and benefits of Tysabri in light of the increasing number of new cases of PML.

CONTINUE to Read this Tysabri /PML Update by clicking here to read from the NMSS website.


Friday, October 30, 2009

National Fatigue Survey Still Seeks Participants

The information found below comes from the MSFYi e-newsletter from the MS Foundation

The National Chronic Fatigue Survey, an internet-based survey of fatigue-related to chronic illness conducted by the Fatigue Management Institute of Florida Institute of Technology, will continue to run through January 2010. The survey is designed to gather information on the nature and impact of fatigue associated with chronic medical disorders.
The survey is open to adults with a chronic medical condition, can be completed anonymously, and can be accessed at http://research.fit.edu/fmi.
The survey findings will be used to better describe the experience and severity of fatigue related to chronic medical conditions and will contribute to the development of improved techniques related to fatigue. Summaries of survey findings will be posted on the website in March 2010.

Is the Flu Shot Safe for People with MS?

The MS Foundations' Editor’s note: In this news brief, MSF Medical Advisor Ben Thrower, M.D., addresses the topic of flu shots and the flu, including H1N1, for people with MS.

It seems like everywhere you turn, there is news about the flu. What does all this mean for a person with MS? We need to clarify that there are two types of flu bugs being discussed. There is the common seasonal flu and there is the H1N1 or swine flu strain. Vaccines for these two forms of the flu come in both a nasal spray and injectable form. So, here are some general guidelines:
  • No person with MS should receive the nasal spray form of the vaccination. This form is a live attenuated (weakened) virus and is not recommended for people with MS.
  • People with MS who are on one of the beta interferons (Avonex®, Betaseron®, Rebif® or Extavia®) or Copaxone® are not considered to be immunocompromised. The same is true for people with MS on no therapy. The risks and benefits of getting vaccinated for seasonal flu or H1N1 must be looked at individually for these people. The risk of getting the flu is not higher in this group, but if they do get the flu, there is a good chance that MS symptoms will increase due to the infection.
  • Some people with MS may be considered to have lowered immune function. This would include people on immunosuppressive drugs like Tysabri®, Novantrone®, methotrexate, Cellcept®, Imuran®, Cytoxan® and chronic steroids. These people should strongly consider getting vaccinated as they may be at higher risk for getting the flu.
  • The safety of the seasonal flu injectable vaccine has been established by the CDC for people with MS. We expect the safety of the H1N1 vaccine to be similar although in fairness the vaccine will not have been specifically tested in people with MS.

A new forum offered by the MSF: "African Americans with MS"

Some great news, the Multiple Sclerosis Foundation (MSF) has a new forum: African Americans with MS Forum.

Dr. Mitzi Williams & Lara Stepleman, PhD both experts on African Americans with MS will answer your questions. They see over 1, 000 African Americans with MS in the Augusta MS Center , GA

On this forum you will also be able to post questions to the people on the forum. A chance for you to meet other African Americans with MS across the UNITED STATES.

go to:http://www.msfocusforum.com/ - If you have a problem with the forum, email Derrick Lee at the MSF. ( derrick@msfocus.org)

Information provided by Helen Mangan - Support Group Coordinator for the MS Foundation.


Thursday, October 29, 2009

Combination Therapies - Breaking MS e-News from The Rocky Mountain MS Ctr.

From the Rocky Mountain MS Center:

Click Here to read about Combination Therapies and Moving Beyond Your Diagnosis


Wednesday, October 28, 2009

Multiple Sclerosis industry news

In the October issue of the Consortium of MS Centers (CMSC) e-newsletter

Review these headlines (some of which were recently posted to this blog, from other sources)

Have a good day and remember that MSV&N (MS Views and News) is unique in what we do. Determined to bridge the gaps of ms information found from various MS organizations.


The MRF’s Research Demonstrates That Remyelination Possible

Here is a link to the Myelin Repair Foundation (MRF) blog post of the Possibility of Remyelination - http://myelinrepair.org/blog/?p=1084

Read and share your thoughts.


"Kate's Counterpane" - A Collection of videos from an MS Patient and the Hope that she portrays

"Kate's Counterpane" is an online platform that combines photos, videos and text. It is a look into the world of Kate Milliken, and what happened in her first year with MS (she was diagnosed in December of 2006).

Kate is throwing Kate's Counterpane into the universe as a It's a personal expression, also an attempt to lay out the trifecta of elements that have been part of managing her illness: The clinical medicine, the complementary techniques and the visualization and positive attitude. Kate believes everyone has a right and an ability to feel better no matter where they are with their course of MS, and aims to provide a sense of hope through her story.

To view the films consecutively, please visit: www.katescounterpane.blip.tv

A Note from Stuart ( editor): These video clips should be watched by those affected by MS. Patients and Caregivers. These clips detail Kates' life, before and after MS diagnosis. The clips are filled with information that many will say, "hey that was me too".

There is a video that got me wrinkled and yanked a tear. It's the one with her dad..

Watch these clips and form your own opinions.
Comment to this blog posting or on facebook.

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A Look at: Stem cell transplantation for secondary progressive multiple sclerosis

Bone Marrow Transplant. 2009 Oct 26. [Epub ahead of print]

Autologous haematopoietic stem cell transplantation for secondary progressive multiple sclerosis: an exploratory cost-effectiveness analysis.

Tappenden P, Saccardi R, Confavreux C, Sharrack B, Muraro PA, Mancardi GL, Kozak T, Farge-Bancel D, Madan J, Rafia R, Akehurst R, Snowden J.

Health Economics and Decision Science (HEDS), School of Health and Related Research (ScHARR), University of Sheffield, Sheffield, UK.

Treatment options for secondary progressive multiple sclerosis (SPMS) are limited. Mitoxantrone is routinely used to stabilize disease progression; however, evolving evidence suggests clinical benefit from intensive treatment with autologous haematopoietic stem cell transplantation (HSCT).

Given differences in cost and outcomes, preliminary cost-effectiveness studies are warranted if this approach is to be developed for more widespread application in SPMS. We developed a decision-analytic Markov model to explore the potential cost-effectiveness of autologous HSCT versus mitoxantrone in SPMS, using patient-level data from registry sources.

The model evaluates the lifetime costs and health outcomes associated with disability progression and relapse. Sensitivity analyses were undertaken to examine the uncertainty surrounding cost-effectiveness outcomes. In the absence of randomised controlled trial (RCT) evidence, conditions for comparative analysis were not ideal. Under optimistic assumptions, HSCT is estimated to cost below pound3000 per quality adjusted life year gained.

However, when a strict 6-month sustained progression rule is adopted, HSCT may be less effective and more expensive than mitoxantrone.

The model results were sensitive to reducing procedural costs and HSCT-related mortality.

We conclude that HSCT could potentially achieve an acceptable level of cost-effectiveness. However, caution should be exercised as large, high-quality RCTs comparing HSCT versus mitoxantrone are necessary to validate these findings. Bone Marrow Transplantation advance online publication, 26 October 2009; doi:10.1038/bmt.2009.305.

PMID: 19855441 [PubMed - as supplied by publisher]

Source: PubMed


A cross-sectional study of bone health in multiple sclerosis

Neurology. 2009 Oct 27;73(17):1394-1398.

Marrie RA, Cutter G, Tyry T, Vollmer T.

Health Sciences Center, GF-533, 820 Sherbrook Street, Winnipeg, MB, Canada R3A 1R9 rmarrie@hsc.mb.ca.

BACKGROUND: Osteoporosis is an important risk factor for fragility fractures. Although osteoporosis is considered common in multiple sclerosis (MS), few previous studies focused on fractures in MS.

OBJECTIVE: Using the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry, we investigated the frequency of osteoporosis, fractures, and clinical risk factors for fracture in MS.

METHODS: In 2007, 9,346 NARCOMS participants reported fractures and clinical risk factors for fractures including history of osteoporosis or osteopenia (low bone mass), sedentary level of physical activity, falls in the last year, current smoking status, family history of osteoporosis, and impaired mobility.

RESULTS: Among responders, 2,501 (27.2%) reported low bone mass. More than 15% of responders reported a history of fracture after age 13 years (n = 1,482). Among those reporting fractures, 685 (46.2%) reported multiple fractures, while 522 (35.2%) reported a wrist fracture, 165 (11.1%) reported a vertebral fracture, and 100 (7.4%) reported a hip fracture. Excluding age, 1,413 (15.1%) participants had 1 clinical risk factor for fracture, 2,341 (25.0%) had 2, and 5,393 (57.7%) had 3 or more. Among participants with a history of fracture, 746 (55%) reported taking calcium supplements, 858 (68.8%) reported taking vitamin D supplements or a multivitamin with vitamin D, and 334 (22.5%) reported taking a bisphosphonate.

CONCLUSION: Patients with multiple sclerosis (MS) often have multiple risk factors for osteoporotic fractures. Many patients with MS with low bone mass or previous fractures are not taking supplemental calcium or vitamin D, suggesting a potential area of improvement in care.

PMID: 19858462 [PubMed - as supplied by publisher]

source - Pubmed


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26 New Research Projects Launched Totaling $9.2 Million To Propel Multiple Sclerosis Research

Medical News Today - Article Date: 27 Oct 2009

The National MS Society has just committed $9.2 million to launch 26 new MS research projects as part of its comprehensive research program and commitment to move research forward. This investment comes despite a challenging economic environ¬ment, and is the latest in the Society's relentless research effort to stop MS, restore function, and end this disease forever.

The new projects include a clinical trial testing a type of physical therapy to improve function in people with progressive MS, and a project searching for gene variations that may explain why MS affects more women than men. Read summaries of all these new projects.

There are
FDA-approved drugs that can impact the underlying disease course in people with the more common forms of MS. However, none of these drugs can stop or cure the disease. The National MS Society funded basic research that helped lead to the development of each of these drugs, and continues to be a driving force of MS research. Read more about how far we've come in MS research.

National MS Society

Article URL: http://www.medicalnewstoday.com/articles/168828.php


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MS Views and News is dedicated to the global collection and distribution of current information concerning Multiple Sclerosis. In collaboration with other organizations, MS Views and News uses state-of-the-art communication channels to provide information for those affected by, or interested in MS.


Tysabri's drug's inventor believes a new test might identify people who are less at risk for a deadly side effect.

Reviving Tysabri

Matthew Herper, 10.27.09, 03:59 PM EDT

The drug's inventor believes a new test might identify people who are less at risk for a deadly side effect.

Worries about a potentially deadly side effect have long impeded sales of the multiple sclerosis drug Tysabri, made byElan. But now the medicine's inventor says he has created a diagnostic test that might reveal those patients who are less at risk of the side effect. That could increase the market for the drug, which is already a $1 billion seller.

Continue to read, by clicking here to read this Forbes posting

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Occupational Therapy for People with Multiple Sclerosis

By Julie Stachowiak, Ph.D., About.com Guide to Multiple Sclerosis
Tuesday October 27, 2009 -

The first time I ever heard the term "occupational therapy" was when my 6-month-old nephew was having trouble adapting to solid foods, so was sent to an occupational therapist (OT). She prescribed a little schedule for introducing foods in a certain order, showed his mom how to feed him so that he would have the best chance at success and even recommended a certain spoon. The term "occupational therapy" made sense when it was explained to me as help to do the things that "occupy" our lives - eating, grooming, doing leisure activities - basically taking care of our needs and living our lives.

As people with multiple sclerosis (MS), those "occupations" that used to come naturally and effortlessly may start taking a little more effort, then a lot more effort, until eventually we stop doing them or need to rely on others for help.

Occupational therapy can help us keep doing these things for ourselves longer. Not only that, a good therapist can help us streamline things so that they require less of our valuable energy - even when our symptoms may be worse.

Read a little more here about occupational therapy - you may be surprised. In writing these articles, one thing that I wanted to really emphasize is that occupational therapy is not just for people that need a lot of help or are severely disabled - it is for anyone that wants to do things "smarter" when their bodies are presenting them with challenges and frustrations.

Read the full articles:

Source for this posting

Tysabri's Problems in Europe May Be Fault of European Doctors

By David Phillips | Oct 27, 2009

Biogen-Idec's Tysabri Problems May Be Fault of European Doctors

As mentioned in my last BNET Pharmaposting, Biogen Idec’s key multiple sclerosis drug Tysabri had been linked to 23 worldwide cases of a potentially deadly brain infection called progressive multifocal leukoencephalopathy, or PML — with most confirmed cases centered in Europe, in particular Germany. Could there be a link between the seemingly higher prevalence of Tysabri-related PML cases in Germany and lack of oversight?

Hard and fast data confirms that from July 2006 (when Tysabri marketing resumed) to September 8, 2009, thirteen worldwide cases of Tysabri-related PML occurred in patients being treated for MS with Tysabri monotherapy. Of these, only four cases were patients in the United States, according to an FDAPost-marketing Drug Safety report.

Germany is an important MS market for Biogen. Aside from the U.S., Europe is home to four of the top seven markets — Germany, Italy, UK, and Spain — in terms of commercial dollars spent on disease modifying drugs for use in MS, according to an analysis of the global MS market by the pharmaceutical research outfit Visiongain.

Patients receiving monthly Tysabri infusions in the U.S. must be enrolled in theTOUCH Distribution Program overseen by Biogen, which involves (i) extensive monitoring of all patients for signs of PML and (ii) education of all patients and providers, with strong emphasis communicated to all parties that the drug is contraindicated for use in MS patients taking any drugs that may increase their risk of opportunistic infections, including drugs that lower immune function (e.g., azathioprine, chemotherapy, cyclosporine) or immunomodulators, such as the interferon-based disease-modifying therapies.

Continue with this important read, by clicking here


By the way - for those who often ask why I am not doing Tysabri, you all should know that I want to. It's my wife that needs further convincing.


And for those reading this blog posting who are not yet receiving our weekly MS related e-newsletter, published each Thursday and sent to (currently) e-recipients in (57) Countries, then please click here to get registered. It will take all of about 25 seconds to complete this short registration form. - Thank you - Best, Stuart


Tuesday, October 27, 2009

Basic tests used to determine function in MS patients

Information provided by Cherie C. Binns RN BS MSCN

These three videos show some of the basic tests used to determine function in MS patients and describe why these are done in the manner they are done.

Found in the current issue of Consortium OF MS Centers e-newsletter:

  • Timed Up and Go (TUG) Test
  • 25-Foot Walk Test
  • 9-Hole Peg Test

    These videos are courtesy of the International Organization of MS Rehabilitation Therapists (IOMSRT).

  • ============================================

    "Patient Self Management in Multiple Sclerosis"

    Provided BY: The Consortium of Multiple Sclerosis Centers

    Authored by: Robert Fraser, Ph.D., CRC; Erica Johnson, Ph.D., CRC; Dawn Ehde, Ph.D., Malachy Bishop, Ph.D., CRC

    This White Paper represents the consensus of the professionals who comprise the Consortium of Multiple Sclerosis Centers. We encourage your comments, suggestions, or questions. Visit the Consortium at www.mscare.org.

    Health education and disability management research supports the efficacy of self-management programs related to health outcomes in populations of people with chronic illness. The focus here is on actual patient self-management activity vs. health systems intervention or patient education (Barlow et al., 2002). The central premise behind such programs
    is that day-to-day management of chronic illness rests in the hands of the patient, as opposed to medical providers, and wellness management skills are a necessary teaching focus in order to mitigate disability and improve outcomes (Lorig & Holman, 2003).

    To Read this comprehensive publication, click here.


    Sunday, October 25, 2009

    Oregon gubernatorial candidate deals with MS using Segway

    Associated Press Writer
    Article Last Updated; Sunday, October 25, 2009 10:34AM

    SALEM, Ore. – Bill Bradbury isn’t just running for Oregon governor. He’s zipping – on a Segway.

    Using the personal transporter is one way the Democratic politician deals with the effects of multiple sclerosis. He was diagnosed with the disease 30 years ago, but that hasn’t stopped him from becoming one of the most exuberant and popular figures on Oregon’s political scene.

    Tall and lanky, he glides into campaign events on his electric standup vehicle, his booming laugh often heralding his arrival.

    The disease has affected his physical skills, he says, but not his mental abilities or his capacity to govern.

    “I get energized by the challenge of this campaign,” he says. “I really feel like the disability doesn’t interfere with my ability to serve the people of this state.”

    The National Multiple Sclerosis Society says Bradbury is the only candidate with MS running for a statewide office in 2010 that it knows of. Spokeswoman Arney Rosenblat said the group is delighted Bradbury deals openly with his condition.

    “He certainly is a role model, particularly for people who are newly diagnosed with MS and may be uncertain about their future,” Rosenblat says. “It’s important for them to see that they can fulfill their potential and pursue their dreams.”

    Read more of this article from the Durango Herald