Continuous disease-modifying treatment without interruptions provides better long-term outcomes in MS

People with MS who adhere to their treatment with interferon (IFN) beta-1a without interruption have lower relapse and progression rates than people who do not not, said researchers here at the 19th Meeting of the European Neurological Society.

To read more, as reported by the UK MS Trust: click here.

Source: UK MS Trust

mid-source: msif.org
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The development of patient-reported outcome indices for multiple sclerosis (PRIMUS)

summary: In MS the perception of symptoms and how they impact quality of life varies significantly from one person to another. The perceived response to treatment, including rehabilitation, may also differ. In this article the authors aimed to evaluate a newly developed set of tests (called PRIMUS) which takes into account MS symptoms in a holistic way, from the point of view of the person with MS. The authors concluded that scores obtained from PRIMUS are reliable and very useful in detecting how the disease impacts on the person with MS.

authors: Doward L, McKenna S, Meads D, Twiss J, Eckert B

source: Mult Scler. 2009 Jun 25

weblink: click here

source: msif.org
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Cognitive dysfunction in primary progressive multiple sclerosis: a neuropsychological and MRI study

summary: There are very few studies of cognitive dysfunction in people with primary progressive MS (PPMS). In this study the authors compared a group of people with primary progressive MS with a group of secondary progressive MS and a group of healthy volunteers. They found that (SPMS) people with MS scored lower than controls on some tests, such as those related to attention and information processing, verbal fluency and memory. However, people with PPMS and with SPMS performed tests similarly. Moreover, the authors found that people with a higher number of lesions performed worse than people with a lower lesion burden.

authors: Ukkonen M, Vahvelainen T, Hämäläinen P, Dastidar P, Elovaara I

source: Mult Scler. 2009 Jun 25

weblink: click here

Information source: msif.org

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An MS Patients' Diary of his Stem Cell Therapy treatment

Written By: Preston Walker

After undergoing adult stem cell treatment in May 2008 for multiple sclerosis, I felt better than I had in several years. About 10 months after the treatment, I noticed my depression and fatigue symptoms had returned. I recognized this as the beginning symptoms of what I experienced in the late 90's that ultimately led to my diagnosis in December 2001. I wanted to catch the disease before it progressed any further. I had already done my research leading up to the eventual trip to Costa Rica. After the first treatment going as well as it did, I didn't have to do any more research. I made arrangements to hop back on a plane for more therapy through the Institute of Cellular Medicine (ICM) in San Jose, Costa Rica. Staff at ICM was still as compassionate as I remember from my initial treatment. I can't imagine a better experience with staff at a clinic, anywhere. I again stayed at the Apartotel Christina. ICM left my treatment schedule within my room. I discovered my treatment would consist of another mini-liposuction, two intravenous injections of stem cells taken from my fat tissue, two intrathecal injections and three sessions of physical therapy. I went through my second intrathecal injection as well as my second IV injection of stem cells taken from my own fat. A hint on the injections. The intrathecal (into the spinal cord) sounds very painful. The procedure has been compared to an epidural that most women allow during child birth. My wife told me she didn't feel it because well,,she was distracted!! It is not much different for the guys with the exception that we aren't giving birth!! I barely felt either injection. When I underwent the mini-liposuction, they didn't take any fat from the same areas they did last year. Specifically, fat was taken from my inner thighs and lower back. Before the IV injection of those stem cells, Dr. Tomas told me staff at CIMA hospital was unable to get enough stem cells to only use mine so she coupled the injection with adult stem cells taken from donated umbilical cords. Apparently the magic number for the injections is 50 million stem cells. The second mini-lipo was a little more painful than the first. I can summarize that experience and my outlook on the pain with this, if I must endure pain with hope of improving my quality of life - bring on the pain!!! I compared the physical therapists at CIMA hospital to drill sergeants in United States Army boot camp that I experienced in 1987 where some very serious "learning" exercises were provided. That was long ago but they made a lasting impression on me. My drill sergeant in 2009 is named Jennifer. The one thing you can say about the physical therapists at CIMA hospital is that they are consistently trained!! They are very compassionate but tough as nails. When my physical therapy sessions concluded, she concluded my session by giving me printed instructions on the exercises we had been doing. . There is one change this time. Dr. Riordan and staff are keeping 20% of the stem cells for use should I ever need to come back. Dr. Riordan said he is doing that to keep us from undergoing another mini-liposuction.. I thank God for that man's intelligence!! I haven't noticed much improvement yet from this second treatment. Possibly, my hopes should be more realistic. I didn't get here over night so the return to health will not happen quickly either. Richard Humphries, whom I underwent stem cell injections with in 2008, had already returned for his second treatment. The difference between he and I is that a symptom of his MS involved the loss of hearing. His hearing improved dramatically after the first treatment. Richard returned because scientists there believed they discovered the stem cell responsible for inner ear hair growth. His return involved the hope that his hearing would be improved even more. Richard experienced other improvements but they took several months to materialize and were more subtle. He has already been through this for the second time so, I wait patiently. I will keep you informed as I notice any improvements.

More updates to follow as time permits

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Heat and MS: Okay, it's officially hot now...

Written By Julie Stachowiak, Ph.D., About.com Guide to Multiple Sclerosis

Tuesday June 30, 2009

Okay, it's official. It's hot. It's humid. This means that for those of us with MS we have a choice - stay inside and be kinda mad and anxious about summer, or go outside and be REALLY mad and anxious about summer.

I'm bringing up these articles again to remind us that, even though it is that time of year, there are some things we can do to keep functioning the best we can. It is also to remind us that, if we feel a little slower, a little bit MSier, forget and drop things more, not to be too hard on ourselves. Get a glass of iced tea, get in the pool or inside and take it easy.

Read the full articles:

• An Overview of Heat Intolerance and MS
• Top 10 MS Cooling Products
• Tips to Combat Heat Intolerance for People with MS
• Make Your Own Cooling Products for MS Heat Intolerance

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45 New Projects Launched To Propel MS Research

source: National MS Society

Jun 23, 2009

The National Multiple Sclerosis Society has just committed $15.8 million to support 45 new MS research projects as part of its $40 million international investment this year alone to spur momentum in cutting-edge MS research. This financial commitment is the latest in the Society’s relentless research effort to prevent, treat and cure MS.

To ensure the scientific merit of each research proposal selected, the National MS Society relies on expert advisory committees that include more than 70 world-class scientists who volunteer their time to carefully evaluate hundreds of proposals every year.

The new projects include a comprehensive genome-wide exploration of susceptibility genes – the next definitive step to map all genes that make people susceptible to MS; a clinical trial to test the impact of vitamin D and how it alters the immune system in people who have MS; and an investigation of changes in the brain that may lead to personality and behavior disorders in MS.

Download a pdf about these new research projects.

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BioScrip Commences Patient Enrollment in Teva Neuroscience Therapy Optimization in Multiple Sclerosis (Tops MS) Research Study

© Business Wire 2009

2009-06-30 14:20:03 -

BioScrip, Inc. (Nasdaq: BIOS) announced today that Teva Neuroscience tapped BioScrip Specialty Pharmacy as one of several national research study participants in one of the most comprehensive MS research studies announced to date.

TOP MS is a new research study for MS patients. The study will collect information, through online surveys about the quality of life, symptoms, relapse, employment, usual level of activity participation and general health activity from individuals living with MS for a two-year period.

“We are very pleased that BioScrip was selected as a specialty pharmacy study participant”, said Rick Smith, president and COO of BioScrip Inc.

“Teva recognized our BioscripCare™ MS program’s ability to provide high-quality, comprehensive and personalized MS care on a national basis. At BioScrip, we believe that this study will reaffirm our ongoing commitment to BioscripCare drug therapy adherence programs for patients and physician support services to improve the quality of life for the MS patient.”

READ MORE by clicking here

An MS Patient's own writings: Emotional Piracy

Emotional Piracy

I was watching a movie. "Hilary and Jackie". A moment greatly acted out, showing what it feels, how it feels to lose the world. She is alone and listening to what she sounded like, when she was a cellist of the world. Her face distorted, by the tears cascading down her body that is wracked too hard by a mistake created by the hand of man, while climbing up the ladder to better and surpass what exists upon our only home called Earth. I see the anger and her fear, confusion and disbelief of something ugly whose middle name is death. Too early and uninvited, sometimes painful and mystifying, it's given name is Multiple Sclerosis.

A very ugly little toad, who hides beneath the stagnant pool, a genetic pool called industrialization. The other toad, his wife, goes by another ugly name, abandonment is how it is defined. She is alone inside her illness, as I keep inside my illness, whose name I consider a mortal sin. We are left behind by illness not by family, friends or people, but betrayed by a fluke of nature we created. Inoculations paved the road to confuse our bodies nature, to protect, to defend against the beast. I am no pariah, nor in-activated woman who feels and needs the same as you or you. But, when I see her in her chair, wracked by spasms and well earned fears, of the future of her life, too shortly lived. She had become ' the cello player', the instrument itself, one cannot see the dancer from the dance. Understand if you choose, what it is to really lose, the only life I'm fairly certain of. Don't sing to me of forever, and the Pearly Gates of Heaven, I am here. I am alive. I am today.

Theresa Dould Cummings 09/14/08
*Jacqueline Du Prey's rendition of Elgar's Cello Concerto must be experienced. 'I am Elgar. I am this Concerto.'

To contact Theresa - write to: TerryDould@aol.com OR, leave a comment here. - thank you

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“One teaspoon to be taken each morning with breakfast for one month.”

A Treatment to Swallow – by Wendy Elliman

29Jun09

(as appeared in Hadassah Magazine, June/July 2009, Vol. 90 No. 8 )

Hadassah doctors, working with Harvard Medical School, are researching a groundbreaking liquid therapy to target and prevent autoimmune diseases.

Sometime in the next decade, there may be a prescription that reads “One teaspoon to be taken each morning with breakfast for one month.”

Thirty days later, the patients who follow these directions and swallow the liquid daily will find themselves free of their diabetes, lupus, multiple sclerosis, rheumatoid arthritis, Crohn’s disease, ulcerative colitis or whichever of the more than 80 other distinct and crippling auto-immune illnesses dispatched them to their doctor.

READ MORE

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Cladribine Is Safe Overall in Patients With Multiple Sclerosis: Presented at ENS

By Judith Moser, MD

MILAN, Italy -- June 24, 2009 -- According to a safety analysis of a study presented here at the 19th Meeting of the European Neurological Society (ENS), the incidence of treatment-emergent adverse events in the trial was comparable between 2 doses of cladribine and placebo in patients with multiple sclerosis (MS), with exceptions related to the mechanism of action of cladribine.

In the 96-week phase 3, randomised, double-blind, placebo-controlled Cladribine Tablets Treating MS Orally (CLARITY) trial, cladribine tablets demonstrated significant efficacy in the treatment of patients with relapsing-remitting MS.

READ MORE

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Teva Completes Enrollment in Second Oral Laquinimod Phase III MS Clinical Trial

25 June 2009

JERUSALEM & LUND, Sweden--(BUSINESS WIRE)--Teva Pharmaceutical Industries Ltd. (NASDAQ: TEVA) and Active Biotech (NASDAQ OMX NORDIC: ACTI) today announced completion of patient enrollment for the second pivotal Phase III clinical trial, BRAVO, evaluating the novel, oral once-daily immunomodulating compound, laquinimod, for the treatment of relapsing-remitting multiple sclerosis (RRMS). BRAVO is a global clinical trial designed to evaluate the efficacy, safety and tolerability of laquinimod versus placebo, and to provide risk-benefit data for laquinimod versus a currently available injectable treatment, Avonex^®.

The BRAVO study completed patient enrollment in June, recruiting more than 1,200 patients at 156 sites in the United States, Europe, Israel and South Africa.

“Teva and Active Biotech are encouraged by the potential of laquinimod to address patients' unmet need for an oral immunomodulating MS therapy that provides efficacy while maintaining safety” said Moshe Manor, Teva’s Group Vice President, Global Branded Products. “We look forward to continuing our clinical Phase III program of laquinimod, and hope it will offer enhanced quality of health for RRMS patients”.

ALLEGRO, the first global Phase III trial of laquinimod, completed enrollment in November 2008, after recruiting more than 1,000 patients at 152 sites in North America, Europe and Asia. The trial is currently ongoing.

In February 2009, laquinimod received Fast Track designation from the U.S. Food and Drug Administration (FDA).

Continue to read by clicking here

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Thousands of Cyclists ride in Various NMSS Bike tours

See below for three recent NMSS Bike Tour challenges to raise much needed money Cyclists raise about $1.85 million for MS Salt Lake Tribune - United States More than 3000 registered to ride Saturday and Sunday and raise funds to fight multiple sclerosis. This year's fundraising goal is $1.8 million. ...

Thousands of cyclists raise money for MS 9NEWS.com - Denver,CO,USA WESTMINSTER - Governor Ritter joined cyclists on Saturday for the two day ride for Multiple Sclerosis. Cyclists hope to raise more than three million ...

Cyclists ready to roll on Bike-to-Bay event Toledo Blade - Toledo,OH,USA The annual tour is named after Reeves Grant Northrup of Toledo, who died in 1999 at age 64, nearly 30 years after he was diagnosed with multiple sclerosis. ...

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MULTIPLE SCLEROSIS: Biogen reports 10th case of PML brain infection

Reuters via Yahoo Finance:

Mon Jun 29, 12:23 pm ET

BOSTON (Reuters) – A 10th patient taking Biogen Idec Inc's Tysabri has developed a potentially deadly brain infection since the multiple sclerosis drug was reintroduced to the market in July 2006, sending the company's shares down nearly 7 percent.

The Cambridge, Massachusetts-based biotech company released the news on its website late on Friday.

Tysabri, which Biogen sells in conjunction with Irish drugmaker Elan Corp Plc, is considered critical to the future growth of both companies.

The drug was temporarily withdrawn from the market in 2005 after it was linked with a brain infection known as progressive multifocal leukoencephalopathy, or PML. It was brought back in 2006 with stricter safety warnings.

Sales of the drug have failed to live up to expectations. It generated $227 million in the first quarter, less than the $246 million analysts had expected.

Biogen has recently begun taking a more aggressively upbeat tone in marketing the drug, insisting physicians are becoming more comfortable with risk of PML. Even so, some analysts believe doctors may take patients off the drug for certain periods of time.

"We view increased adoption of drug holidays as a strong possibility," said analyst Eun Yang of Jefferies & Co, whose 2009 sales estimate of $1 billion for Tysabri remains unchanged.

Analysts at Deutsche Bank downgraded Biogen shares to "hold" from "buy," and said the company no longer warranted being one of the bank's 'top picks' in 2009.

Biogen shares were down 6.8 percent at $46.66 in morning Nasdaq trading.

(Reporting by Toni Clarke; Editing by Steve Orlofsky and Lisa Von Ahn)

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Living with Progressive MS - the Movie

Information provided by Karen in Tamarac, Fl.

"A Certain Kind of Beauty"

By Ashley Neglia

For the past 11 years, Dan Aronie's body has been ravaged by a rare form of progressive relapsing multiple sclerosis that attacks the central nervous system and steadily damages the nerves. At 33, his condition has deteriorated to such an extent that he can no longer live on his own. His tremors are so severe that he cannot feed or dress himself, and his body is so weak that he no longer has the strength to sit up on his own. Today he is dependent on 24-hour care from his family and hired caretakers, who help him get out of bed, dress, eat and go to the bathroom.

After being diagnosed at 23, his mother, Nancy Slonim Aronie, asked Dan if he wanted to record the disease's progression. He agreed, and with the help of family friend, Gerry Storrow, Nancy began filming her son's steady decline. When Nancy showed her personal footage to filmmakers Liz Witham and Ken Wentworth, it struck a personal note and the decision to create a documentary about Aronie's life was made.

Click here to continue reading

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Stu's Views and MS News e-newsletter - June 24th edition

The June 24th - Stu's Views and MS News e-newsletter is now archived at:
http://stusviewsandmsnews.blogspot.com/2009/06/stus-ms-news-new-ms-patient-video.html


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Continuous Disease-Modifying Treatment Without Interruptions Provides Better Long-Term Outcomes in Multiple Sclerosis

Docguide.com -
Presented at European Neurological Society (ENS).
By Judith Moser, MD

MILAN, Italy -- June 23, 2009 -- Patients with multiple sclerosis (MS) who adhere to their treatment with interferon (IFN) beta-1a without interruption have lower relapse and progression rates than patients who do not adhere to their medication as regularly, said researchers here at the 19th Meeting of the European Neurological Society (ENS).

In the Prevention of Relapses and disability by Interferon beta-1a Subcutaneously in Multiple Sclerosis (PRISMS) study, IFN beta-1a 22 or 44 mcg administered subcutaneously 3 times weekly proved effective in reducing relapses and delaying disability progression in patients with relapsing-remitting multiple sclerosis (RRMS) compared with placebo.

After the initial 2-year double-blind phase, patients originally randomised to placebo were re-randomised to IFN beta-1a 22 or 44 mcg 3 times weekly for an additional 2 years.

On study completion, all patients were offered the choice of continuing to receive blinded or open-label treatment during years 5 to 6. Beyond year 6, patients could continue on any or no disease-modifying drug.

Data from the long-term follow-up (LTFU, up to 8 years) supported the efficacy of the treatment.

Continue to read from the 6th paragraph

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RebiSmart(TM), First Electronic Injection Device for Delivery of Multiple Sclerosis Treatment Rebif(R)

Merck Serono Launches RebiSmart(TM), First Electronic Injection Device for Delivery of Multiple Sclerosis Treatment Rebif(R)

- RebiSmart(TM) is Designed to Improve Ease of Handling and Usage and Introduces the Potential for Improved Treatment Adherence for Multiple Sclerosis Patients

By: PR Newswire

Jun. 24, 2009

GENEVA, June 24 /PRNewswire/ -- Merck Serono, a division of Merck KGaA, Darmstadt, Germany, announced today the launch of the innovative individually adjustable electronic injection device RebiSmart(TM) for the self-administration of Rebif(R) (interferon beta-1a), the company's disease-modifying drug used to treat relapsing forms of multiple sclerosis (MS). RebiSmart(TM) is the first device of its kind in this indication and was specifically designed for ease of handling and use. The unique features of RebiSmart(TM) also introduce the potential for improved treatment adherence, helping patients receive the full benefit from their treatment.

RebiSmart(TM) is used with Rebif(R) multidose cartridges, each of which contains one week's worth of medicine. Interactive, on-screen instructions and signals guide patients through the injection process, individually adjustable comfort settings give patients more flexibility with injection duration and depth, helping minimize discomfort and pain.

"Making injection more comfortable for the patient is important to ensure optimal treatment outcomes in multiple sclerosis," said Dr. Virginia Devonshire, Assistant Professor of Neurology at the University of British Columbia in Vancouver, Canada. "The first electronic injection device in MS is an innovative approach and could contribute to increasing patient adherence to therapy."

Continue reading from the 4th Paragraph

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Coping strategy and anxiety evolution in multiple sclerosis patients initiating interferon-beta treatment

summary: Different coping strategies have been described in people dealing with stressful situations. Symptoms of anxiety and depression may occur in a high percentage of people recently diagnosed with MS, especially if they are about to start treatment. In this article the authors aimed to investigate whether the levels of anxiety and depression in people recently diagnosed with MS and who were due to start disease modifying drugs were different depending on the specific coping strategy they followed.

They found that most people in the study chose a coping strategy consisting of obtaining information about the stressful situation (diagnosis and treatment) and dealing directly with the stressor (task-oriented strategy). Those people that chose a task-oriented strategy exhibited lower levels of anxiety compared to people who chose an emotion-oriented strategy (controlling all emotional issues related to the stressor) or an avoidance-oriented strategy (avoiding all kinds of confrontation). The authors concluded that understanding coping strategies may help health professionals to customise support and, in this case, increase adherence to treatment.

authors: Moreau T, Schmidt N, Joyeux O, Bungener C, Souvignet V

source: Eur Neurol. 2009 Jun 12;62(2):79-85

To read more: click here

information source: msif.org
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Fingolimod And Cladribine: Two New Oral Substances Show Promising Results In Current Clinical Trials For MS Therapy

June 23, 2009

The results of current clinical trials on new substances for MS therapy are among the new research findings that are being discussed with particular interest at the ENS meeting. Professor Comi is part of an international research team presenting the latest results of a study involving the orally administered drug fingolimod that is still in the clinical trial state and yet to be approved. An earlier study showed that oral fingolimod reduced the annualizied relapse rate in MS patients by more than 50 percent versus placebo.

The new data now being presented by Professor Comi and his colleagues document developments over a longer period of time. "After four years, patients continuously treated with the substance had a low relapse rate, and 63% to 70% of these patients remain relapse free," the expert reports. "The majority of those patients treated also remained free from inflammatory activity and disability progression."

Another trial being presented in Milan by an international study group investigated the efficacy of a cladribine tablet therapy ,.... click to continue
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Figuring Out Who Will Benefit Most From A New Therapy For Multiple Sclerosis

Medical News Today
June 23, 2009

In a recent phase II clinical trial, the drug alemtuzumab (Campath-1H) was found to be a highly effective treatment for individuals with early relapsing-remitting multiple sclerosis. However, a substantial proportion of the patients treated (30%) went on to develop another autoimmune disease, mostly thyroid autoimmunity. Now, Joanne Jones and colleagues, at the University of Cambridge, United Kingdom, have determined that individuals with higher levels of the soluble factor IL-21 in their blood prior to alemtuzumab treatment were those that went on to develop an autoimmune disease.

>> Read MORE <<


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Advanced nerve cell system could help cure diabetic neuropathy, related diseases

Physorg.com
June 23rd, 2009

Multiple sclerosis, diabetic neuropathy, and other conditions caused by a loss of myelin insulation around nerves can be debilitating and even deadly, but adequate treatments do not yet exist. That's in large part because of deficiencies in model research systems. In an upcoming issue of the journal Biomaterials, a UCF team addresses this problem with a report on the first lab-grown motor nerves that are insulated and organized the same way they are in the body.

The group's model system, along with further advances now within reach, could dramatically improve understanding of the causes of myelin-related conditions, and enable discovery and testing of new drug therapies.

Nerve malfunctions, or neuropathies, involve a breakdown in the way the brain sends and receives electric signals along nerve cells. In mammals, these signals are able to travel long distances because of breaks in their myelin insulation called nodes of Ranvier, each of which chemically boosts the signal, allowing it to travel to the next node. "They're like power station relays," says James Hickman, a bioengineer at UCF who led the new research, which achieved the first successful nodes of Ranvier formation ever on motor nerves in a lab culture, among other advances.

Continue reading more

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MS Related: Smoking Linked To Brain Damage, New Study

Medical News Today
June 23, 2009

Research led by scientists in India suggests there is a direct link between smoking and brain damage whereby a compound in tobacco that turns into a cancer-causing chemical once it has been through the body's metabolism, triggers white blood cells in the brain's immune system to attack healthy brain cells.

Click to read more
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MS Views and News & Stuart, need your assistance

Six years ago, after feeling that I couldn’t get enough information in one place, I started my first blog called Stu’s Views and MS News. The blog was extremely successful and I began to get letters from around the world asking for more. Now motivated, and feeling that I was helping others, I eventually talked my brother into a creating a website portal and helping to recreate the blog.

The blog and website have changed several times since then, and now you can find everything posted at either our website http://www.msviewsandnews.org and/or our MS Blog, called Stu’s Views and M.S. News: http://wwwmsviewsandrelatednews.blogspot.com/

Within several years of beginning this venture we began to see the need for ever more news consolidation and formed an organization last year with the intention of obtaining not-for-profit status and hence able to raise funds to further the needs of our community. In order to make sure that this organization is reliable and forthright, I formed a board of directors and an advisory board. The boards are comprised of professional persons from both within and outside the MS community. (See our website in a few weeks for more information on the composition of our board.) Together we have been structuring and planning for the day when we will have not-for-profit status (502(c)3) and can then begin our real work of expanding our ability to distribute news. Well, I’m proud to announce that the day in now here! With your love, care, pushing, prodding and support, we are now able to grow and help our community even more.

MS Views and News, Inc., a 501(c)3 not-for-profit charitable organization, 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.

Multiple Sclerosis is a chronic, often disabling disease that attacks the central nervous system of the body. The progress, severity, and specific symptoms of MS are unpredictable and vary from one person to another. Today, new treatments and advances in research are giving new hope to the approximately 400,000 people living with MS in the United States and many more around the world.

MS Views and News is a comprehensive source of information, not commonly found in one place, for patients and families of those affected with this disease. As such, a website www.msviewsandnews.org has been developed and includes topics of interest, resources, links to many resources, information sharing blogs and articles, and much more.

In order to support this huge endeavor, seeking to reach patients, families, healthcare providers, and any individual or company interested in the day-to-day facts of diagnosing, treating and living with MS, we are in need of funds to support administrative and operating costs for our existing and future projects.

Your support is vital to our success and to the health and well-being of MS patients and their loved ones all over the world. Please consider one of the following giving opportunities:

MS Views and News Friend $25
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MS News and Views Website provides a vast variety of information, support the website:
Website Friend $500
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MS News and Views On-line Educational Programs (including streaming video and other technologies)
Educational Friend $2500
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Understanding that these are difficult economic times for many, any donation of any amount is greatly appreciated. In order to apply for certain grants and other monies, we need to show numbers of those who are interested in our work – not just donations.

For more information, or to send a donation contact MS Views and News at:
Advancement Department Stuart Schlossman
777 NW 72^nd Avenue, Suite 3005 stuart@msviewsandnews.org
Miami, Florida 33126 (954) 684-1683

Direct donations can be made on our website by clicking here, to contribute:

Thank you not only for reading this long and serious letter, but for taking my efforts (and now OUR efforts) seriously and supporting this organization. You can help in several ways, read our website and blog often for updated information, send us information and articles, send us names of those in our community who can benefit from our work, and lastly, please find the time to make a donation so that we can greatly further the progress and reach more people around the world.

Thank you greatly!

Sincerely,

Stuart Schlossman
President, MS Views and News

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Biogen Idec Announces First Patient Enrolled in the Global Phase III Study of PEGylated Interferon Beta-1a for Relapsing Multiple Sclerosis

June 22, 2009

• Press Release
• Source: Biogen Idec via Yahoo finance
  

–Less Frequent Injections would be a Significant Advancement for People Living with MS–

CAMBRIDGE, Mass.--(BUSINESS WIRE)--Biogen Idec today announced enrollment of the first patient in a Phase III, randomized, double-blind, placebo-controlled trial designed to evaluate the efficacy and safety of PEGylated interferon beta-1a (BIIB017) in patients with relapsing multiple sclerosis (RMS). The trial, called ADVANCE, will determine the efficacy of PEGylated interferon beta-1a in reducing relapse rates in patients with RMS.

“A major issue with patient adherence to injectable therapies for MS is the frequency of injections,” said Peter Calabresi, M.D., principal investigator of the ADVANCE trial and professor of neurology and director of The Johns Hopkins Multiple Sclerosis Center, Baltimore, MD. “Examined in Phase I studies, PEGylated interferon beta-1a was shown to be much longer acting than intramuscular interferon beta-1a and thus offers the possibility of every two or four week dosing without compromising efficacy. This could greatly increase the convenience of this first line class of therapy."

Interferon beta-1a has been successfully used to treat patients with relapsing-remitting multiple sclerosis for more than 10 years. PEGylation protects the interferon beta-1a molecule from being degraded, extending the amount of time the drug remains in a patient's system. The process has been used in other therapeutic areas, and Biogen Idec is studying this innovation in interferon therapy for MS. Administered via subcutaneous injection, PEGylated interferon beta-1a is being studied to evaluate its potential to reduce the frequency of treatment injections and provide patients with an effective and more convenient dosing option.

To Read More, Click Here

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Redefining functionality and treatment efficacy in multiple sclerosis

summary: MS is a disease in which various symptoms can seriously affect the quality of life (QoL) of people affected. However, scales and measurements used in clinical practice are mostly focused on mobility and ambulatory issues. The authors of this article describe the different tools used so far to assess QoL and expose the tools' lack of sensitivity to detect many problems related to QoL. Finally they propose new definitions of functionality and efficacy and highlight the important need to assess people with MS in a more comprehensive way, looking important issues such as cognitive function, emotional status, visual acuity, fatigue and pain as well as physical disability.

authors: Foley JF, Brandes DW

source: Neurology. 2009 Jun 9;72(23 Suppl 5):S1-11

to read : click here

source : msif.org
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Tysabri Update

TYSABRI Update

Patients Treated with TYSABRI as of the end of March 2009:

Cumulatively, in the combined clinical trial and post-marketing settings, approximately
56,700 patients have been treated with TYSABRI. Of these, approximately 52,000
patients have been treated in the post-marketing setting.

In the post-marketing setting only and since the reintroduction of TYSABRI in July 2006,
approximately
• 24,900 patients have received at least one year of TYSABRI therapy,
• 14,400 patients have received at least 18 months of TYSABRI therapy,
• 6,800 patients have received at least 24 months of TYSABRI therapy.

As of the end of March 2009:
• Approximately 40,000 patients were on TYSABRI therapy worldwide; of these:
• In the U.S., approximately 20,800 patients were on TYSABRI therapy commercially;
• In the rest of world, approximately 18,500 patients were on TYSABRI therapy commercially; and
• In global clinical trials, approximately 600 patients were on TYSABRI therapy.

Progressive multifocal leukoencephalopathy (PML):
In the period between the reintroduction and approval of TYSABRI in July 2006 and
June 19, 2009, the following cases of PML have been confirmed:

>> Click here to review this listing

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Biogen reports 9th case of PML in Tysabri patients

June 19, 2009
Reuters

LOS ANGELES, June 19 (Reuters) - A ninth patient taking Biogen Idec Inc's multiple sclerosis drug Tysabri has developed a potentially deadly brain infection since the drug was reintroduced onto the market in July 2006.

The Cambridge, Massachusetts-based biotech company announced the news late on Friday on its website.

Biogen has said it does not plan to announce each new case of progressive multifocal leukoencephalopathy, or PML, except as a weekly update on its website.

Sales of Tysabri, Biogen's most important potential growth driver, have been curtailed by concerns over PML. The drug was temporarily withdrawn from the market in 2005 before being returned with stricter safety warnings.

Biogen has said physicians are becoming more comfortable with the risk of PML, but sales of Tysabri in the first quarter were $227 million, less than the $246 million analysts had expected.

Biogen sells Tysabri in partnership with Elan Corp Plc (ELN.I) of Ireland.

Biogen's shares, which fell 32 cents to close at $51.67 on Nasdaq, were slightly higher at $51.74 after hours. (Reporting by Deena Beasley; Editing by Gary Hill)

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Understanding & coping with Multiple Sclerosis

By Kumudini Hettiarachchi

Many have heard the tongue-twister, Multiple Sclerosis (MS), but given it scant thought. Did you know that MS, a chronic neurological disease, affects young adults in the prime of their life, in their 20's and 30's, a majority of whom may be breadwinners?

Considered a "special disease" since 1868, when the first case of MS was diagnosed, the world has at last woken up to the gravity of this illness which leads to progressive loss of nerve function and 141 years later declared May 27 as 'World MS Day'.

Graphic courtesy nytimes.com

For pretty Dr. Hithaishi Weerakoon, it all started when she was just 24 years old. Pins and needles in her feet, sometimes her foot felt like plastic. There was numbness of face and feet; inability to pick up things or hold papers and difficulty in coordinating hand movements.

>> READ MORE beginning with fourth paragraph

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Managing Symptoms: Bowel Dysfunction

MS Learn Online Presents

Today's new Feature Presentation

Managing Symptoms: Bowel Dysfunction
featuring Nancy Holland, EdD, RN, MSCN

focuses on:

• Constipation
• Incontinenance of the bowel
• A healthy regimen

Click here to view the webcast, or

copy into your browser:

http://www.nationalmssociety.org/multimedia-library/webcasts--podcasts/managing-symptoms-bowel-dysfunction/index.aspx

If you have a pop-up blocker, you will need to disable it prior to participating in a MS Learn Online webcast.


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I Walk Because Program Gives Consumers a Voice

PR Newswire

- Provide Rich Social Media Experience For WalkMS Participants -

NEW YORK, June 18 /PRNewswire/ -- Reinforcing its commitment to those who support friends, family, and other people living with multiple sclerosis, Saatchi & Saatchi Wellness partnered with Acorda Therapeutics to relaunch the online component of the "I Walk Because" program. The site delivers a personalized user experience through the use of enhanced social media applications.

The site, www.iwalkbecause.org, relaunched to coincide with the 2009 season of the National Multiple Sclerosis Society's WalkMS program, is the online extension of Acorda's presence at 30 of the largest Walks around the country. Saatchi & Saatchi Wellness partnered with Studio PMG, a California-based multimedia company, to incorporate cutting edge technology into the build and execution of the site.

Continue to read from the 3rd paragraph

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Biogen Reports New PML Case in Tysabri Patient

Source United Spinal Assoc.

Biogen Idec. Inc. recently reported the eighth confirmed case of progressive multifocal leukoencphalopathy (PML) in a patient taking the company’s drug Tysabri. PML is a rare and often fatal viral disease that is characterized by progressive damage or inflammation of the white matter of the brain at multiple locations.

According to reports, the patient with the latest confirmed PML case took 35 doses of the monthly medication, the most of any of the post-launch cases, and was located overseas. Only two of the eight cases since last July were located in the U.S.

In 2005, a link between Tysabri and PML led to the drug being pulled off the market for 18 months. The drug was relaunched in 2006 due to its effectiveness in fighting MS.

It is reported, however, that the long-projected risk of developing the PML infection while on Tysabri is well below 1 in 1,000 patients.

Continue reading

Have a comment? Please leave here. - Thank You
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Teriflunomide Oral Drug Trial Recruiting Worldwide

The TOPIC Study is a clinical research study testing the safety and effectiveness of Teriflunomide, an oral investigational medication for those at high risk of developing multiple sclerosis (MS). This study, which is sponsored by Sanofi-Aventis, will also determine whether early treatment can reduce the severity of symptoms associated with MS.

Teriflunomide (Terr-eh-floo-no-mide) is derived from Leflunomide (Leh-floo-no-mide), also known as Arava®. (<

Arava® is already approved in many countries for the treatment of rheumatoid arthritis. Teriflunomide inhibits rapidly dividing cells, including activated T cells, which are thought to drive the disease process in MS.

Read More, from the United Spinal MS Scene<
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Intimacy and Multiple Sclerosis: A Four-Point Strategy to Maintain a Satisfying Sex Life

source: United Spinal Association
By: Tom Scott

In every healthy marriage and relationship, intimacy plays an important role. For those living with a disability, such as multiple sclerosis (MS), maintaining a satisfying sex life can be an arduous task. But there are ways to return to the level of intimacy you once knew.

“I think MS, especially for women who are diagnosed, can affect your psyche,” says Mimi Mosher, who, through the National Multiple Sclerosis Society, offers intimacy guidance to patients. “Many women, at times, feel unattractive and experience mobility issues and various symptoms of the disease that hurt their self-confidence. First and foremost you really need to restructure who you are and become comfortable in your own skin before you can start to address intimacy and relationship-related issues.”

Frustration
Mosher was diagnosed with progressive MS at the age of 24, gradually losing her ability to walk and witnessing a steep decline in her energy and stamina. Her initial MS symptoms were vision-related: She unexpectedly started losing her eye site. After undergoing a barrage of tests, doctors gave her a 30% chance of not having MS.

To continue to read this well informative and much needed (by many) article, click here

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MS Related: Biogen hopes to have PML-related test by year-end

* Biogen working on test for virus related to PML

* Says risk of PML less than originally believed

* Physicians expected to increase Tysabri use

By Toni Clarke

BOSTON, March 25 (Reuters) - Biogen Idec Inc said on Wednesday it is developing a test that can identify the presence of a virus that can cause a potentially deadly brain infection in certain patients taking its multiple sclerosis drug Tysabri, and hopes to have it available by year-end.

Click here to continue reading from Reuters

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Registry Would Collect Accurate MS Data and Risk Factors

Thank you to all MS activists who have been pushing for a national multiple sclerosis registry. Senator Byron Dorgan (ND) on Tuesday introduced legislation that would for the first time establish a national coordinated system to collect and analyze data on multiple sclerosis and Parkinson's disease — the National MS and Parkinson's Disease Registries Act (S. 1273).

Many of you have expressed concern about whether the current numbers accurately reflect the MS community. Ask your Senators to support the MS registry legislation. Click here and enter your ZIP to take action.

This legislation would establish separate registries for MS and Parkinson's disease at the Agency for Toxic Substances and Disease Registry at the Centers for Disease Control and Prevention (CDC).

The epidemiological data collected and analyzed through the MS registry will provide a foundation for evaluating and understanding MS issues such as geographic clusters of diagnosis, genetic and environmental risk factors, variances in gender ratio, disease burden, and changes in health care practices. Read more here (pdf).

Thank you for being an MS activist. Join the movement at www.nationalMSsociety.org/advocacy.

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Have something to share with others? If so, please use the post comment link found below. Your name and email address would be appreciated but is not necessary unless you want a response from others. Thank You
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Traveling With Multiple Sclerosis

Your MS symptoms shouldn’t prevent you from planning the perfect vacation. United Spinal Association’s Able to Travel program can alleviate the stress involved in booking an accessible trip.

Traveling with a disability such as multiple sclerosis (MS) can be a stressful experience. Some individuals are so intimidated by the prospect of encountering accessibility issues away from home, that they are reluctant to plan a dream vacation or family getaway.

Continue to read this important exposé from the United Spinal website. Click Here
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Update MS Resource Links at MSV&N

Updated Web resource links found at the MS Views and News website

Alternative Therapies and / or Devices

Caregiver Information

Clinical Trials / Drug Studies

Links to MS Organizations (Globally)

Medications for Multiple Sclerosis

Mobility and Accessibility

MS Facts - In Languages other than English

Multiple Sclerosis Resource Links

MS Views and Related News Site Sponsors

Nutrition

Pharmaceutical / Patient Resources

Stem Cell Related Information Links

Symptoms and Symptom Management

Websites Not Directly Associated w/ MS

See what else is available for you at our website and also take time to review the banners on our homepage. Click: http://www.msviewsandnews.org -- Bookmark or save to favorites for faster future access

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Genes Behind Multiple Sclerosis Identified

Thursday, June 18, 2009

An international team of scientists have discovered two genetic variants that could increase the risk of multiple sclerosis (MS). The genes could also reveal links to other autoimmune diseases.

The study was published 15 June in the prestigious scientific journal Nature Genetics.

rofessor Matthew Brown, from The University of Queensland's Diamantina Institute for Cancer, Immunology and Metabolic Medicine, said a gene identified by the research consortium could lead to simple preventative treatments for MS.

“One of the two genes is most likely a gene which controls metabolism of vitamin D,” Professor Brown said.

Continue to read by clicking here

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Multiple Sclerosis: The ability of the immune system to discriminate between "self" and "non-self" antigens is vital

Cybermed, 18-06-2009

Novel methods of therapy of neuroautoimmune diseases such as multiple sclerosis, neuroboreliosis as well as autism

The ability of the immune system to discriminate between "self" and "non-self" antigens is vital to the functioning of the immune system as a specific defense against invading microorganisms. "Non-self" antigens are those antigens on substances entering or present in the body which are detectably different or foreign from the animal's own constituents, whereas "self" antigens are those which, in the healthy animal, are not detectably different or foreign from its own constituents.

However, under certain conditions, including in certain disease states, an individual's immune system will identify its own constituents as "non-self," and initiate an immune response against "self" material, at times causing more damage or discomfort as from an invading microbe or foreign material, and often producing serious illness in an individual. Autoimmune disease results when an individual's immune system attacks his own organs or tissues, producing a clinical condition associated with the destruction of that organ or tissue, as exemplified by diseases such as rheumatoid arthritis, insulin-dependent diabetes mellitus, acquired immunodeficiency syndrome ("AIDS"), hemolytic anemias, rheumatic fever, Crohn's disease, Guillain-Barre syndrome, psoriasis, thyroiditis, Graves' disease, myasthenia gravis, autism, glomerulonephritis, autoimmune hepatitis, multiple sclerosis, systemic lupus erythematosus, dystrophic epidermolysis bullosa, and the like.

To continue to read this long article, click here.

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MS Patients needed for online research via patient surveys

The Find a Cure Panel will be asking for MS Patients to complete surveys over a few month period

To help Research for Multiple Sclerosis, we are asking that you register for this series of surveys by clicking on this link: http://member.assistyourteamsurveys.com/aytsreg.aspx?AID=224

The information you need to first complete is the registration form. Then, in a few weeks, the Surveys will then begin arriving at the email address you provide.

At the end of the Survey Cycle:

For each completed survey, the "Find a Cure Panel"
will donate to "MS Views and News" .

Register to help MS research

Thank you

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Multple Sclerosis Related : Patient assistance Programs

Patient Assistance Programs

Needy Meds
Rx Outreach
Rx Assist
Chronic Disease Fund
Patient Access Network
Avonex (Biogen/Idec)
Betaseron (Bayer HealthCare)
Copaxone (Teva)
Rebif (EMD Serono & Pfizer)
Tysabri (Biogen/Idec & Elan)
MS Premium Copay Assistance (NORD)

AMPYRA Patient Support Services
at 888-881-1918 from 8:00 a.m. to 8:00 p.m. Eastern Time

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MS Patients in Rhode Island to soon begin feeling better

Rhode Island Will License Medical Marijuana Shops, Overriding Veto

Updated: 06-17-09

The Rhode Island legislature overrode a gubernatorial veto of a medical marijuana law Tuesday afternoon by an overwhelming margin, paving the way for state-licensed medical marijuana shops to begin operating. The House voted 68-0 for the pot measure and the senate moved it minutes later by a 35-3 count.

Once the law takes effect, the state will be the first in the nation to have one officially licensed nonprofit center selling marijuana. Over time, the state will license further nonprofit dispensaries.

Continue reading this GREEN, Leafy Story

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Scots schoolboy leads MS campaign to Hollyrood

Daily Record - June 16, 2009

A CAMPAIGNING Scots schoolboy whose mother has multiple sclerosis has led hundreds of supporters to Hollyrood in a bid free vitamin D to be made available for children and pregnant women..

Ryan McLaughlin wants the groups to get free vitamin D supplements, believing it can help prevent multiple sclerosis (MS).

The 14-year-old from Drumchapel, Glasgow, said he decided he had to act when he saw his mother suffering with the incurable disease.

Ryan said he was inspired after watching the film Braveheart and hearing Harry Potter author JK Rowling talk about her mother's battle with MS.

He was joined by around 200 supporters, many of them schoolchildren, in a march down Edinburgh's Royal Mile towards the Scottish Parliament.

Speaking before putting his case to Holyrood's Petitions Committee, he said: "I'm going to Parliament to try to give them my insight into how my family's been affected and that vitamin D is the answer, in my opinion, to get through this."

Continue to read by clicking here and continuing from the 7th paragraph

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NYU Study May Find Better Treatments For MS

Doctors at New York University are conducting a medical study that may determine the best treatments to slow the advancement of multiple sclerosis. NY1's Health reporter Kafi Drexel filed the following report.

David Rice Jr. had not even reached his 40th birthday when he found out he had multiple sclerosis.

"I was sad. You think about your future, and you think, what's my future going to be? Am I going to be a burden to someone? What's going to happen with me?" says Rice.

Click here to continue reading from the 3rd paragraph and to watch a video from NY1.com

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When To Massage Injection Sites for People With MS, and more

AMAZING, totally amazing. Before you read what is found below (which I personally just read), I was telling a friend earlier today that yesterday, in spite of mid 90 temperature, I had fixed several sprinkler heads that needed replacing and that earlier today, I was doing some in-home repairs (in cool temps).These are things that for the last few months needed to get done, but didn't, because of my fatigue and pain issues... I am mentioning this, because I felt so productive doing these small tasks, rather than sitting in front of the computer all day. Then seeing what Julie wrote, I was amazed...

Here is Julie's story:

from Julie Stachowiak, Ph.D. Usually I try to find articles or blogs that have a loosely-related theme, then say something moderately insightful about them. However, today I woke up feeling the effects of the heat and lack of sleep and worse than when I went to bed last night. Most days I rage against these feelings and fight them to get something done, which usually ends up with me feeling a little angry and still nonproductive. Today I have decided to kick back a little and take a new approach (although I still put together a couple little articles for you guys). Think I am going to be nice to myself, take it as easy as possible and see what happens. I bet I'll get just as much done and feel better about this whole situation. I encourage everyone to do the same - do something that makes you feel good. It's worth a try, and besides, I am starting to realize that the sun doesn't seem to be responding to my threats and begging, unless that is the reason that it has kicked it up a notch. Take (extra) care of yourselves, my friends.

What MSers, MS Nurses and MS Docs Have to Say
The National Multiple Sclerosis Society conducted a survey of 250 MS neurologists, 250 MS nurses and 250 people living with MS. Here is a very brief summary of the results. Read more...


When To Massage Injection Sites for People With MS
This is a short little reminder that massaging injection sites is a good thing, but you have to know when to do it, based on the med you are using. When I rub my Copaxone sites (or convince my husband to do it), that hurts-so-good feeling almost makes the whole injecting yourself thing worth it. Almost. Read the full article: When To Massage Injection Sites for People With MS

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RRMS - UK research project

Information found below was furnished by Gemma Y - on Facebook

HL397 Get £15 for an interview about Multiple Sclerosis in the UK.
We would like to offer you £15.00 for taking part in a 15 minute online survey about Relapsing-Remitting Multiple Sclerosis.

To qualify you will have to meet the following criteria:-
a) Have been diagnosed with Relapsing-Remitting Multiple Sclerosis
b) Have been diagnosed by a neurologist
c) Take one of the following medications Avonex (Interferon Beta 1a), Rebif (Interferon Beta 1a), Betaseron / Betaferon (Interferon Beta 1b), Copaxone (Glatiramer Acetate),Novantrone (Mitoxantrone) , Corticosteroids (e.g. Depo-Medrol), or Tysabri, formerly known as Antegren (Natalizumab)
d) Live in the UK

If you wish to take part please email : Belinda.shale@healthcarelandscape.com

Subject titling your email RRMS Alternatively you can join us at The Patients Voice by clicking here

http://www.thepatientsvoice.org/Join_The_Patients_Voice.asp

Have something to share with others? If so, please use the post comment link found below. Your name and email address would be appreciated but is not necessary unless you want a response from others. Thank You
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