New Resource for MS: “MS Active Source”

Editor’s Note:  MS is thought to be more prevalent in Gulf War veterans than other people.  Despite repeated calls for such research, VA officials have yet to conduct any studies on the prevalence of MS in Gulf War veterans.

MS ActiveSource provides many excellent tools for managing MS. 

Additionally, the tools may be of interest and value to other Gulf War veterans and those who care for them.

--Anthony Hardie

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MS ActiveSource is a place that offers information to support people living with multiple sclerosis.

Information on MS ActiveSource is updated to provide new ideas for living well and staying active. In short, it is a tool to help you take control of your MS. Here you can use any of your MS ActiveSource tools to build a personalized homepage or connect with a mentor or support.

Whether you are here to seek knowledge or support, MS ActiveSource can be a destination for many of your questions about living well with MS.

 

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  Exercising your mind is just as important as exercising your body.

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  Being organized may make the daily management of your multiple sclerosis easier.

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  My MS Yoga was designed to help you stay active.

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  Keep track of your active life.

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  Discover local and national MS-related programs.

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  Find someone who may understand, request an MS mentor.

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Welcome to a place that’s completely devoted to helping you try to live better with your MS. Here you’ll find more ways to stay active, eat healthier, connect with others, and feel better about MS. Have a look.

Register today with MS Active Source and:

• Receive a free fitness DVD
• Share your favorite recipe
• Find memory games and fitness tools
• Speak with a mentor

Register

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Source:  MS ActiveSource, http://www.msactivesource.com/

Neurology Now: FDA Approved First Oral MS Therapy

MS is thought to be more prevalent in Gulf War veterans

Written By Kierstin Wesolowski, Neurology Now

(NeurologyNow) - On Sept. 22, 2010 the FDA approved fingolimod, the first multiple sclerosis (MS) oral therapy, for use in patients with relapsing forms of MS. 

Fingolimod binds to the sphingosine 1-phosphate receptor-1 (SIPI) on some lymphocytes, trapping them in the lymph nodes. It produces a reduction in the number of active T-cells circulating to the CNS, which decreases neuroinflammation and also CNS damage.

“The approval will have a tremendous impact on MS treatment because it offers a new mechanistic approach to the treatment of the disease,” said Bruce A. Cohen, MD, professor of neurology and Director of the MS program at the Feinberg School of Medicine at Northwestern University.

“It also provides an acceptable form of treatment for patients who are unwilling to take current therapeutics or have failed other therapies. Many people have injection phobias and this treatment offers an alternative.”

The MS world has long anticipated fingolimod’s approval, added John Corboy, MD, professor of neurology at the University of Colorado-Denver and co-director of the Rocky Mountain MS Center at Anschutz Medical Campus. “Once we saw the clinical trial data and the FDA review committee’s unanimous recommendation of its approval [in June], it was essentially considered a fait accompli [a fact]that it would be approved.”

The FDA approved the 0.5mg dose of fingolimod based on the results of two phase 3 clinical trials: TRANSFORMS (Trial Assessing Injectable Interferon versus FTY720 Oral in Relapsing-Remitting Multiple Sclerosis) and FREEDOMS (FTY720 Oral in Relapsing-Remitting Multiple Sclerosis).

TRANSFORMS investigators randomized 1,292 patients to 0.5mg or 1.25 mg of fingolimod daily, or interferon beta 1A. Researchers found an annualized relapse rate of 0.16 in the 0.5mg group and 0.20 in the 1.25mg cohort (52- and 38-percent relapse reduction rates, respectively).

In FREEDOMS, investigators randomized 1,033 patients to 0.5mg or 1.25mg of fingolimod or placebo. An annualized relapse rate of 0.18 was reported in patients taking 0.5mg of fingolimod compared to 0.16 in patients taking 1.25mg (54- and 60-percent relapse reduction rates, respectively).

(Read the Feb. 18, 2009 Neurology Today story, “Two Oral Therapies Found Effective for MS” in print and online http://bit.ly/aqdmCy)

The FDA advised that patients using fingolimod be monitored for bradycardia during the first six hours of being given the drug, according to an FDA news release. In addition, patients should receive an ophthalmologic evaluation prior to starting treatment due to the risk of developing macular edema, which occurred in some patients. (See “Possible Adverse Events”)

EXPERTS COMMENT
“We haven’t seen any specifics from the FDA or [fingolimod manufacturer, Novartis] on how to do the monitoring,” said Dr. Corboy. “Can the patient be left alone in the office for six hours, or do they need to be hooked up to telemetry, where they’re having a continuous EKG? And does an EKG need to be done on all patients, or only those with a history of heart disease?”

He added that most of these decisions will most likely have to be made according to individualized practices.   

Aaron E. Miller, MD, chief medical officer of the National MS Society and director of the MS Center at Mt. Sinai Medical Center in New York City, said he will prescribe fingolimod conservatively as more safety data are gathered during the post-marketing period. However, “if the safety profile looks good, then almost any patient with the relapsing form of MS would be a good candidate” for its use. Even patients who are doing well on their injectable forms of disease-modifying therapy, he added. 

Dr. Cohen advised that neurologists will have to be cognizant of possible later emerging side effects that weren’t identified in the clinical trials and may come to light with more widespread use of the agent. 

All the experts who spoke to Neurology Now were encouraged by fingolimod’s approval and its subsequent impact on MS treatment.

“The treatments that we presently have aren’t as good as we would like them to be: they aren’t cures, and they’re not tolerated or adequate enough for a variety of patients,” said Dr. Corboy. “I’m happy to have another treatment option available and look forward to learning more about it as it goes into general use. I anticipate it will have a significant role in the armamentarium in treating MS patients.”

POSSIBLE ADVERSE EVENTS
The following are possible adverse events associated with fingolimod. Dr. Corboy noted that the majority of these side effects were more significant at the higher, 1.25mg dosage, which was not approved by the FDA.

• Bradycardia
• Heart Block
• Increased blood pressure
• Macular edema
• Restrictive lung disease
• Liver function abnormalities
• Headache
• Influenza and other infections

REFERENCES

• Kappos L, Radue EW, Burtin P, et al. A placebo-controlled trial of oral fingolimod in relapsing multiple sclerosis. N Engl J Med 2010; E-pub 2010 20 Jan.
• Cohen JA, Barkhof F, Kappos L, et al. Oral fingolimod or intramuscular interferon for relapsing multiple sclerosis. N Engl J Med 2010; E-pub 2010 20 Jan.

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Source:  Neurology Now, http://journals.lww.com/neurologynow/blog/breakingnews/pages/post.aspx?PostID=16

MS Foundation: Biomarkers Test for MS Nine Years Before Symptoms Appear

(MSfocus.org) - A small study analyzing  the blood of healthy people who developed MS, along with  the blood of those who did not, has uncovered “blood signatures” that may lead to a diagnosis of MS before symptoms appear, and consequently earlier and more effective intervention.

"We are not yet able to treat people with MS to prevent the onset of the disease but knowledge is power," says Anat Achiron, a professor of Tel Aviv University's Sackler Faculty of Medicine and vice-dean of research at Sheba Medical Center. "Every time we meet a new patient exhibiting symptoms of MS, we must ask ourselves how long this has been going on. We can diagnose MS by brain MRI, but we've never been able to know how 'fresh' the disease is."

If doctors can predict the onset of MS early enough, intervention therapies using immunomodulatory drugs or beta-interferon drugs that stave off MS symptoms might be used.

Examining blood samples of twenty19-year-old Israelis who were inducted into the army as healthy soldiers, and the nine of them who later developed MS,  Achiron and her team at Sheba were able to use a "high throughput analysis" using more than 12,000 gene transcripts expressions. The screening compared similarities and differences in the blood of those who developed MS and those who did not, eventually establishing biological markers.

"Those who will develop MS will show a different blood signature from those who will not," says Achiron. "When we compared the gene expression signatures, we saw a similar pattern of the same working biological processes."

These early genetic markers may now be used to test for MS up to nine years before healthy young adults start developing symptoms. And because MS is thought to have a genetic component and a tendency to be found in siblings, Achiron says the biomarkers can be used as a tool for brothers and sisters of people with MS. The goal is to learn more about the genetics of MS through this new discovery, with the hope that early intervention therapies may be more effective, and help advance medicine toward a cure, according to Achiron.

Typically by the time a person notices symptoms, significant and irreversible nerve damage is already done.

New Funding Focuses on Environmental Link to MS in Gulf War Veterans (2 articles)

Study Shows Link Between Gulf War Service and MS

Written by MICHAEL KUHNE, Johnstown, Penn. Daily American Correspondent

JOHNSTOWN, Pennsylvania — Local veterans and members of the National Multiple Sclerosis Society gathered in the Holiday Inn along Market Street Wednesday to recognize U.S. Rep. John Murtha for securing funds for medical research.

Approximately $5 million has been allocated to the society through the U.S. Department of Defense. Murtha secured the funding through the Congressionally Directed Medical Research Program.

“We’re here to thank Congressman Murtha and to talk about an important program in achieving funding for medical research,” said David Chatel, executive vice president of advocacy for the organization.

The funding has been the result of efforts by society members and veterans seeking more research to answer questions about the disease, board Chairman Robert Bernstein said.

The primary purpose of the event is to understand what MS is, how it affects people and what the society is doing to stop it, he said.

The National Multiple Sclerosis Society attempted to secure an appropriation for research in 2007, but did not. The organization was later recognized by Congress and added to the Congressionally Directed Medical Research Program.

“We recognize the tremendous need for MS research,” Pittsburgh division board member Geoff Kelly said. “We understand our activists have a vision of a world without MS; make no mistake, we will get there.”

Tom Caulfield of the Veterans Leadership Program of Western Pennsylvania stated during his speech that many cases of multiple sclerosis among veterans are linked to combat service. This link is most clear among Gulf War veterans and could be due to a neurotoxin, said Caulfield, who donated $500 to the organization.

National Multiple Sclerosis Society vice president of federal government relations Shawn O’Neail said this could be because there is more data available on veterans from the Gulf War than Vietnam War veterans.

O’Neail said a study of Kuwaiti residents shows the number of multiple sclerosis cases doubling in the last six years, indicating a possible environmental trigger for MS.

The event closed with an award ceremony for Murtha’s contribution and a short speech from activist Angela Gorzelsky, who suffers from the disease. Murtha was unable to attend to the event. The award was accepted by the congressman’s district director, Mark Critz.

“Everything we can do comes from everybody out there,” Gorzelsky said. “It really will make a difference.”

More information about the National Multiple Sclerosis Society can be found online at www.nationalMSsociety.org/PAX or by calling 1-800-FIGHT-MS.

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Organizations work to raise awareness of MS risk for vets

Written by RANDY GRIFFITH, Johnstown (Penn.) Tribune-Democrat

George “Murph” Neelan of suburban Pittsburgh started losing control of his muscles

24 years ago, and the condition has gotten progressively worse.

Bill Taafe of Duncansville developed visual problems so severe he couldn’t drive and was virtually housebound for eight months in 1979, but he has had few problems since then.

The two men have two things in common: Both are veterans and both have multiple sclerosis.

And both were in Johnstown on Wednesday for a town hall meeting to raise awareness of the need for multiple sclerosis research and the possible threat to military veterans of combat.

“We have a strong indication of a link between combat-service veterans and MS,” said Tom Caulfield, regional coordinator for the Veterans Leadership Program of Western Pennsylvania and director of Veteran Community Initiatives in Cambria County.

Those who fought in the first Gulf War in particular have elevated rates for multiple sclerosis, he said.

About 28,000 veterans are receiving care for multiple sclerosis through the Veterans Adminstration, Caulfield said.

An estimated 5,300 cases are thought to be service-connected.

But only about one in three eligible veterans receives health care through the Veteran’s Adminstration, Caulfield said.

“Some of the research we want funded would find out who some of these other veterans are,” he said.

In the past few years, funding available for multiple sclerosis research has dropped even as the incidence of the disease has increased, David Chatel, National Multiple Sclerosis Society’s executive vice president for advocacy, told the audience at the meeting in Holiday Inn-Downtown, 250 Market St.

Backed by national veterans’ groups, the society was able to have $5 million for research added to the Defense Department’s budget.

The society is asking for $15 million next year.

Research is vital, Neelan said.

“I came here to give support,” he said. “These grants for research can help find a cure.”

The Multiple Sclerosis Society provides vital support for those dealing with the neurological disease, he said.

“I say am the luckiest man in the world because I have had so much help and support from the MS Society and my friends and family,” Neelan said.

Extreme Home Makeover Provides Home for Gulf War Veterans with Gulf War Illness, MS

By Rebecca Bunch
The Chowan Herald

Sunday, May 10, 2009
Jamesville, Virginia —

Cooking and cleaning may not be most men’s idea of a good time, but they fill Jeff Cooper’s heart with joy.

Cooper, whose family is settling into their ‘Extreme Makeover’ house completed just weeks ago, said he loves spending time in the kitchen, now that he can.

He explained that he used to get a lot of pleasure from cooking and helping with the housework, especially baking cakes for his wife, Clara. But that’s difficult to do when you’ve ended up in a wheelchair in a kitchen that’s not handicapped accessible.

“The first night we were here, after the house was finished, Clara woke up and found me in the kitchen just checking everything out,” Cooper said. “I guess it was about 3:30 in the morning. I was just so excited about getting back in there again that I couldn’t sleep.”

Comfortable surroundings

Clara said amenities like a double-dishwasher have enabled Jeff to start cooking and cleaning up the kitchen again, “and I’m happy about that.”

She said that once her husband, a Desert Storm veteran who suffers from Gulf War Syndrome and multiple sclerosis, was in a wheelchair, using the kitchen became very difficult.

“Jeff doesn’t have very good trunk balance,” she said, “and he could easily have fallen trying to put dishes in a single, big dishwasher but two smaller ones are perfect for him.”

In fact, the whole house is designed to make life easier for Jeff. One of Jeff’s other favorite things about the house are the stable-style interior doors that slide rather than having to be pushed open and shut, “because he can handle them by himself,” Clara said.

And the bathroom, too, is handicapped accessible making it easier for Jeff to enjoy soaking in the tub.

For a man who readily admits that in their old home, he often felt like a burden to his wife, life is good.

Best bedroom

Clara said that her favorite rooms are the master bedroom and adjoining bathroom.

“I could live in these two rooms and never come out,” she said with a big smile as she showed one of a steady stream of visitors around during an open house the family held this week. And that’s just what Jeff was hoping for after his family was selected from among five in the area to receive a new home.

“The one room in the house I asked for was for my wife,” he said, tearing up. “She’s the first one up every morning, and the last to bed every night. She takes care of my children, and she takes care of me.”

“I told Ty Pennington, ‘if you can give my wife a nice place to rest, a tub to soak in, something like a 5-star hotel room to rest in, that’s all I want.’ And he met that challenge.”

Meeting Powell

Once they knew they had been selected, the Cooper family, accompanied by Jeff’s devoted dog, Gabby — a 4-year-old Jack Russell terrier/Chihuahua mix who is specially trained to detect seizures and muscle spasms in humans — headed off for a visit arranged by the ‘Makeover’ show to Washington, D.C., a fitting trip for a man who had been honored as North Carolina Veteran of the Year in 2003.

And while they were there, Cooper said, he didn’t worry about what was happening back at home.

He said from watching the show in the past, he had faith that everything would turn out all right.

While there, Cooper had the chance to meet one of his personal heroes, former chairman of the Joint Chiefs of Staff, Gen. Colin Powell.

“If I hadn’t gotten to do one other thing besides meet him,” Jeff said, “that would have enough for me.”

More surprises

But a bigger surprise lay ahead.

As they neared their driveway on the trip home, he said, that was “a very special moment” for his family.

They could see down the road, see all the people outside who had worked so hard to make their new home possible, along with others who had come to offer their congratulations and good wishes to the family.

“In spite of the fact that it had rained all day, they stood out there, waiting for me and my family, to show us how much they cared,” Jeff said.

When asked how she felt as she saw all the people waiting, Clara said, “Speechless.” It felt, she said, like a dream come true.

And that’s exactly how Jeff described the moment when everybody yelled, “Move that bus” and he saw the family’s new log cabin home for the first time.

A log cabin-style house, he said, had been a long cherished dream, but one he had thought was not going to happen for him, his wife, Clara, and their children, Windy and Aaron.

“It still hasn’t sunk in,” he said. “I’m amazed! I still can’t believe it’s ours.”