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Wednesday, August 18, 2010
Fatigue is one of the most common symptoms of MS, occurring in about 80% of people. Fatigue can significantly interfere with a person's ability to function at home and at work, and may be the most prominent symptom in a person who otherwise has minimal activity limitations. Fatigue is one of the primary causes of early departure from the workforce.
What Makes MS Fatigue Different?
Several different kinds of fatigue occur in MS. For example, people who have bladder dysfunction (producing night-time awakenings) or nocturnal muscle spasms, may be sleep deprived and suffer from fatigue as a result. People who are depressed may also suffer fatigue. And anyone who needs to expend considerable effort just to accomplish daily tasks (e.g., dressing, brushing teeth, bathing, preparing meals) may suffer from additional fatigue as a result.
In addition to these sources of fatigue, there is another kind of fatigue—referred to as lassitude—that is unique to people with MS. Researchers are beginning to outline the characteristics of this so-called "MS fatigue" that make it different from fatigue experienced by persons without MS.
Generally occurs on a daily basis
May occur early in the morning, even after a restful night’s sleep
Tends to worsen as the day progresses
Tends to be aggravated by heat and humidity
Comes on easily and suddenly
Is generally more severe than normal fatigue
Is more likely to interfere with daily responsibilities
MS-related fatigue does not appear to be directly correlated with either depression or the degree of physical impairment.
Cause of Fatigue in MS Remains Unknown
The cause of MS fatigue is currently unknown. Ongoing studies are seeking to find an objective test that can be used as a marker for fatigue and for precise ways to measure it. Some people with MS say that family members, friends, co-workers, or employers sometimes misinterpret their fatigue and think the person is depressed or just not trying hard enough.
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This was intended to go out last week, but a glitch delayed it. In that time, I have received some comments about the ISSCR indicating that not everyone thinks they are unbiased scientists. Take a look at the blog below and see what you think (and leave a comment in the blog comment section - help us all out if you are "in the know" or have an opinion).
(From last week:) Check this out - a professional organization, The International Society for Stem Cell Research, has become tired of all the claims of "cures" and "treatments" offered by so-called stem cell clinics. They have set out to educate potential patients with educational materials and questions to ask, as well as look into the patient protections offered by the clinics themselves. They are doing this to keep stem cell science reputable and to help people make good choices, not to limit them.
I wish someone would do this with places offering CCSVI diagnostics and treatments, as well as maintain a database of outcome data - in other words, follow what happens to all of these folks getting treated in other countries (as well as in the US). Since clinical trials are just getting started and demand far outstrips spaces, a collection of case reports (the good and the bad, as well as the neutral outcomes) would start to give us a much more comprehensive picture than the "miracle stories" and couple of "tragedies" that we see on YouTube and portrayed in the media. Just a thought. Take care of yourselves, my friends.
Learn More About Stem Cell Research and Treatment
This is a great initiative. The International Society for Stem Cell Research has recently started a a the ISSCR Task Force on Unproven Stem Cell Treatments to investigate individual clinics that claim to be providing stem cell treatments and cures. Called "A Closer Look at Stem Cell Treatments," their website gives people the opportunity to submit the name of clinics for review. From what I understand, the Society is not going to look at patient outcome data, but really wants to make sure that patients' rights are protected and that the clinics are being supervised by regulatory bodies in their countries or regions. Read more...
Tuesday, August 17, 2010
Tel Aviv University develops genetically mutated stem cells for myelin research
Vanishing White Matter (VWM) disease is a devastating condition that involves the destruction of brain myelin due to a mutation in a central factor. To understand the disease and test potential treatments that could apply to other disorders, such as multiple sclerosis, Prof. Orna Elroy-Stein of Tel Aviv University's Department of Cell Research and Immunology is leading a scientific breakthrough by developing laboratory mice which carry the VWM mutation -- an important new tool.
The mice harbor a mutation of the eIF2B enzyme, which regulates protein synthesis in every cell throughout the body. The key to the new development, says Prof. Elroy-Stein, was the use of genetically-engineered embryonic stem cells to introduce the mutation.
The brain is made up of two components: grey matter, or nerves, and white matter, or glial cells which support the nerves and produce myelin, which wraps around and protects nerve extensions. Recently described in the prestigious journal Brain, the creation of these mutated mice allows for new research on VWM diseases, which trigger loss of myelin in the brain, leading to paralysis and possible death.
Read more. Click Here
Summary: Investigators at the University of Alabama at Birmingham are recruiting 66 people with relapsing-remitting, secondary-progressive, or primary-progressive MS to participate in a study comparing the effectiveness of two types of physical therapy for increasing movement (improving nonuse) of the arm in MS.
Summary: Investigators are recruiting 125 people with relapsing MS in the United States and Canada to determine the safety and effectiveness of ELND002, a variation of an alpha-4-integrin inhibitor delivered via injection under the skin. Elan Pharmaceuticals is sponsoring the study.
Investigators are recruiting 400 people with relapsing-remitting MS for a study evaluating three doses of ACT-128800, an oral compound that affects immune function, versus placebo. The study sponsor is Actelion Pharmaceuticals, Ltd.
Recent Papers Highlight Difficulty of Studying Long-Term Impact on Progression of MS Disease-Modifying Therapies
Scores of research papers from well-controlled clinical trials demonstrate that the MS disease-modifying therapies significantly reduce MS relapses and disease progression, and improve quality of life. However, well-controlled research proving that these drugs can delay the progression of disability over the long term is lacking, which is illustrated in a recently reported British-based study. This article reviews this and other studies that provide additional important data regarding disease-modifying therapies.
FDA Gives Priority Review Status to Application for Oral Cladribine to Treat Relapsing Multiple Sclerosis
EMD Serono has announced that the U.S. Food and Drug Administration has accepted and given Priority Review to its application seeking approval to market cladribine as an oral disease-modifying therapy for relapsing forms of MS.
Monday, August 16, 2010
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