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Thursday, December 24, 2009

An MS Caregiver Needs Stem Cell Information from those with firsthand knowledge

Stuart,

I appreciate what you are doing. My wife is quadriplegic, on a ventilator due to MS. Bedridden for 15 years.

I have hopes for stem cells and other possible cures. When I went to the site concerning the experiences in China with stem cell therapy, I noticed a pattern: generally enthusiastic praise for the treatment during and a few weeks after, followed by no further comments or a rare negative one on lack of progressw. The big improvements were to come within a few months and seem not to have occurred. We need to know the unvarnished truth, even if that diminishes the likelihood of a placebo effect.


Now I see other treatments being covered with a similar pattern: early this and early that.
Follow ups are needed!


Douglas W. Cooper, Ph. D.
Walden, NY
Click to view their family webpage: http://tinyurl.com/mfyh47
.
email Douglas at: dwcooper05@yahoo.com
or leave a comment on this blog site posting ( not on the facebook page that this will also appear)
.
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Wednesday, December 23, 2009

If In The USA - Take Action : Critical Juncture for Health Care Reform

Urge your U.S. Senators to Support Health Care Reform
We are at a critical juncture in the effort to overhaul and improve our nation's health care system. MS activists played an important role in shaping the process, from release of the Society's National Health Care Reform Principles to relentlessly making calls and sending emails to ensure that the legislation adequately supports those living with MS. As the Senate completes work on its health reform package, MS activists must rise to the occasion one more time. The Senate could vote as early as tomorrow--scroll down to email your Senators now. Urge your Senators to support the Senate health reform bill.
The Senate bill makes substantial investments that will improve the lives of people living with MS and other chronic conditions or disabilities. In line with the Society's Principles, the Senate bill:
  • Extends health coverage to tens of millions of people who are currently uninsured and underinsured;
  • Works towards eliminating pre-existing condition discrimination;
  • Prohibits monetary lifetime benefit caps;
  • Restricts the use of annual limits to ensure access to needed care and beginning in 2014, completely prohibits monetary annual limits;
  • Helps make coverage affordable by limiting out-of-pocket costs, providing subsidies to lower-income families;
  • Increases certain providers' reimbursement; and
  • Invests in community-based and long-term care.

People living with MS and other chronic conditions are particularly vulnerable in our current health care system. We need meaningful reform now.

Every vote counts. CLICK HERE, then Scroll down and take action now. Urge both of your Senators to support the health reform bill so that we can seize this historic opportunity and take a true step towards accessible, affordable, comprehensive, quality health care for all.

The information provided above, comes from The National MS Society

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REVIVE MS Support

For those affected with Multiple Sclerosis (especially) in the UK, there is a relatively new support site for you to view, enabling you to reach out to others in similar situation as either you as a patient or for care givers.


Click the above Logo to access Revive MS

Over 10,000 people in Scotland (1 in 500) have MS, the highest prevalence of any country in the world. "Revive MS Support" aims to provide resources and support for everyone affected by MS.


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Tuesday, December 22, 2009

Multiple Sclerosis Music Video - Cool to watch an listen

the song found below was provided to me from an MS peer, Eileen in Miami -- Thank You Eileen


The person who created new imaging to go with the song says:
After singing along to this song by Jordin Sparks I realised some of the lyrics reminded me of MS... MS is kind of like having a tattoo - it'll always be there... we've got to learn to live with it..

Don't waste time and don;t look back.. Just click the above link and then share with others

Meanwhile, while not wanting you to waste any more time, if you haven't yet registered to be receiving my weekly MS related e-newsletter, then please (NOW) click here, to not miss another issue. each e0-newsletter is published each Thursday and as of yesterday, will be received this week in (59) Countries. In less than thirty seconds, you will be registered. Have a great day.
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National MS Society Continues to Propel Research Forward end MS - Launches 2010 With Call for Research Grants to Pursue CCSVI

2009 saw exciting research progress, unprecedented opportunities on the horizon, and more scientists than ever working on resolving important questions. Despite the year’s economic and financial challenges, the National Multiple Sclerosis Society continues to propel research forward to end MS.

New York, NY (Vocus/PRWEB ) December 22, 2009 -- 2009 saw exciting research progress, unprecedented opportunities on the horizon, and more scientists than ever working on resolving important questions. Despite the year’s economic and financial challenges, the National Multiple Sclerosis Society continues to propel research forward to end MS. In 2009 the Society provided over $33.5 million to support 345 new and ongoing projects in its research portfolio, plus $1.5 million for Fast Forward, the Society’s drug development subsidiary which continues to attract new funding streams. In addition, thanks to the efforts of our MS activists, $5 million was specifically allocated for funding MS research out of the 2009 Department of Defense budget.

As 2009 comes to a close, the Society maintains its nimble pursuit of promising research opportunities to end MS and has issued an international call for grant applications to expeditiously examine the potential impact of the chronic cerebrospinal venous insufficiency (CCSVI) hypothesis on disease process in MS. Working with MS Societies around the world, an international panel will be convened to conduct a joint expedited review of the grant applications submitted in order to ensure a coordinated, strategic approach to funding the best research examining the CCSVI hypothesis in 2010. http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=2206

The following is just a small sample of the many important, potentially high-impact research results that occurred during 2009, which support the Society’s three research goals: stopping MS, reversing the damage and restoring function, and ending MS forever.

CONTINUE to read this very interesting MS Society Press Release, by clicking here

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ImmunoSupressive vs Immunomodulator Therapies for Multiple Sclerosis

What are immunosuppressive drugs?

Research indicates that MS is an autoimmune disease. As immunosuppressants have been proven to be beneficial in other autoimmune diseases such as rheumatoid arthritis and psoriasis, drugs that have an immunosuppressant function have shown to be potentially beneficial in controlling disease progression in patients with MS.

Immunosuppressive drugs work by suppressing the body’s immune reaction, and they prevent the body’s ‘good’ white cells (leukocytes) from attacking each other. Normally, leukocytes help regulate the immune system. Immunosuppressive drugs offer another way of treating MS but they are normally used if the disease is progressing in spite of immunomodulatory treatment.

There are a variety of immunosuppressive drugs that have been used in cancer treatment and that have proved effective in treating advanced forms of MS. Specific immunosuppressive drugs used in MS therapy include azathioprine, mitoxantrone and occasionally cyclophosphamide or methotrexate.

However, only Tysabri® (Natalizumab) (in the USA) and Novantrone® (Mitoxantrone) (in the USA, France and Switzerland) are currently licensed specifically for use in the treatment of MS.


+++++++++++++++++++++++++++

What are immunomodulatory drugs?

Immunomodulatory drugs are Disease Modifying Drugs(DMDs), which alter the course of the disease.

Treatments for MS have been considerably advanced by the availability of Disease Modifying Drugs. Positive outcomes in people with relapsing forms of the disease have been demonstrated, including:

  • reduction in the frequency and severity of relapses; and
  • reduction of brain lesion development, as evidenced by Magnetic Resonance Imaging, (MRI), and (for some DMDs) the possibility of future disability.

As the name suggests, immunomodulatory drugs ‘modulate’, i.e. change, the disordered immune processes of MS, and have a corrective effect on the immune system. Interferons belong to this group of drugs.

Interferons are small soluble proteins or glycoproteins that, as ‘messenger substances’, modulate immune responses.

Read more about Interferons and the role they play in treating MS.

Recent results from clinical studies indicate that therapy should begin as soon as possible after diagnosis.

Dosage and route of administration of current available immunomodulatory drugs

Proprietary name

Rebif®

Avonex®

Betaferon®

Copaxone®

International
non-proprietary name

Interferon beta-1a

Interferon beta-1a

Interferon beta-1b

Glatiramer Acetate

Delivery systems

Ready to use Pre-filled syringe

Reconstitution needed / pre-filled syringe

Reconstitution needed

Ready to use pre-filled syringe

Available dosage

22 mcg three times a week or 44 mcg three times a week

30 mcg once a week

0,25 mg every other day

20 mg daily

Route of administration

Subcutaneous injection

Intramuscular injection

Subcutaneous injection

Subcutaneous injection

Other characteristics, such as indications, format, etc. may vary from one country to another. Always consult the product leaflet.


SOURCE for the above data comes from the MS-Network - However, their information has not been updated in a couple of years.

Such the case that Cytoxan and Imuran are also being used for MS and are immunosupressants


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Monday, December 21, 2009

You’re 10 times more likely to get MS in Rhyl than you are in Rio

Wales Online
Dec 21 2009 by Madeleine Brindley, Western Mai
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A CHARITY has called on the Welsh Assembly Government to fund a campaign about vitamin D deficiency and multiple sclerosis.

The MS Society Cymru is calling for ministers to follow Scotland’s lead and raise awareness about the links between the two.

Such a campaign would encourage pregnant women and children under four to take a regular vitamin D supplement.

Scientists recently discovered that MS could be prevented through daily vitamin D supplements.

There is a clear link between vitamin D – known as the sunshine vitamin – and a gene that increases the risk of MS, raising the possibility that the debilitating auto-immune condition could be eradicated.

The prevalence of MS is far higher in typically wet and cold countries such as Wales, where 110 people in every 100,000 are living with the condition.

In a country with lots of sunshine – such as Brazil – only 18 people in every 100,000 have MS.

The NHS in Scotland said it would raise awareness about the links between vitamin D deficiency and MS this month, after being spurred into acting by Glasgow teenager Ryan McLaughlin.

Ryan’s mother, Kirsten, has had MS for three years, and Ryan, 14, has shown some symptoms of the disease but the family only discovered the link earlier this year after a family holiday.

The teenager said: “I was shocked there had not been publicity around this before. We wanted there to be more awareness of the link and more research into how much of a problem it is in Scotland.

“These actions will make a big difference – it will go a long way to giving children some protection against the disease and give parents proper advice.”

Joseph Carter, spokesperson for MS Society Cymru, said: “We are delighted by this announcement by the Scottish Government and are now calling on the Welsh Assembly Government to do the same.

“You are 10 times more likely to develop MS in Rhyl than you are Rio de Janeiro, and new research suggests this is due to vitamin D deficiency.”

Continue Reading

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Keep Informed and Up to date with information concerning Multiple Sclerosis

MS Views and News (a 501©(3) Not for Profit 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.

Click here to continue
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Study could hold key to MS treatment

"We're very encouraged, but can't say it's a 100 percent thing yet," says Dr. Robert Zivadinov, principal investigator of the new MS theory.
Harry Scull Jr./Buffalo News

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THE BUFFALO NEWS

NEWS MEDICAL REPORTER

Buffalo researchers early next year expect to report the initial results of the first major study of a controversial new theory that multiple sclerosis is caused by blockages in the veins that drain the brain.

If proven correct, the novel theory could overturn the current understanding of how to diagnose and treat a disabling and incurable disease that attacks the nervous system.

Advocates of the new theory contend that angioplasty, the same procedure used to open clogged arteries around the heart, could repair the blockages.

If so, it could change the lives of the 2.5 million people worldwide — 500,000 in the United States — with MS, many of whom are desperate for better therapies and intensely monitoring the work here.

In the few months since news reports announced the study, the Buffalo research team has fielded thousands of telephone calls from patients and has become the focus of MS-related Web sites, chat rooms and blogs on the Internet.

The frenzied reaction, including claims that there already is a cure and the pharmaceutical industry is trying to suppress it, contributed to multiple sclerosis organizations around the world recently urging caution while awaiting the results of more studies.

“The idea looks encouraging, but even if it turns out to be right, people need to remember that miracles don’t happen overnight. We have to prove it first,” said Dr. Robert Zivadinov, the principal investigator.

>>> Continue reading <<<


Hope and Elation - Frustration and Anger – Fear and Loathing: The Contrasting Emotional Responses to the Revolutionary Discoveries in MS Made by Dr Za

My thanks to Rusty Patterson for providing me with the following article that you should all read.

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By Dr. Ashton Embry

The beautifully crafted, CTV documentary on the astounding findings of Dr Zamboni and his team for multiple sclerosis has hit the MS community like a tidal wave and has evoked a variety of emotional responses. Most people with MS see CCSVI as a huge breakthrough for understanding and treating MS and had an initial feeling of unbridled elation that finally there was some real hope for an effective treatment on the horizon. I expect most people with MS thought "I have to get my veins checked out!", even before the credits rolled on the Zamboni documentary.

Such a reaction is completely understandable. Dr Zamboni’s research leaves very little doubt that most people with MS have impaired venous flow from the brain and that such a problem is caused by narrowings and outright blockages in the main veins which drain the brain. To anyone with a semblance of objectivity, this is a "no drainer". I might note that small studies in Poland and at both Stanford and the University of Buffalo in the USA have already confirmed these findings. The University of Buffalo is now doing a very large study to add further confirmation. I would be willing to bet the farm that this study will validate Dr Zamboni’s findings and, most importantly, it will silence the vocal skeptics, many of whom are neurologists with a blatant conflict of interest regarding the emergence of a potentially effective, non-drug treatment.

I have noticed from discussions with numerous persons with MS over the past few weeks that the initial feelings of excitement and hope have been replaced in many cases by anger and frustration. This has come about because everyone is finding it impossible to get an MRV to determine if they indeed have venous blockages. In Calgary, one person I was speaking with called every private imaging clinic and got no where. The receptionist at each clinic simply read a prepared response they had gotten from Alberta Health that there is not enough evidence to warrant such a scan. I quote from a November 26

th email from the manager of one clinic "Until we get further instruction … we don't feel that ethically we can institute these scans for patients". Always nice to know the Alberta government is out there making sure persons with MS do not find out if they have a serious venous problem or not.

I have spoken to a few dozen persons with MS and each one expressed their burning desire to find out if CCSVI affects them and if so, how badly. And each one was very angry and frustrated that there was no way they could get such an important test done. The fact that the government substantially contributed to the problem only made them angrier.

When it comes to fear and loathing, I expect these feelings are being harboured by other constituencies of the MS community, namely the MS clinicians, researchers, drug

companies and charities. Why would such pillars of medicine fear and hate CCSVI? Regarding the clinicians, I have no doubt that they quickly realized that, if relief of CCSVI is an effective treatment, especially for the newly diagnosed, then they would essentially be cut out of the action when it comes to treating MS patients. Once a person was diagnosed with MS they would be immediately be referred to a vascular specialist who would then oversee the person’s treatments. It would be "diagnose and adios" for the neurologists, a somewhat ironic development given that is how the neurologists used to treat MS patients before the advent of MS drugs in the mid-90s .

As far as the MS researchers go, I can definitely empathize with them. I have been involved in research for over 40 years and I know, if someone suddenly demonstrated that I had spent the last 40 years barking up the wrong tree, I would have a variety of intense, negative feelings. One thing that has never been mentioned is how the Zamboni results demonstrate that the EAE animal model, which is widely used in MS research and upon which 10s of millions of dollars are spent every year, is clearly not suitable and is almost worthless. The mice do not develop CCSVI and thus the EAE model is no better than an animal model in which the mice developed CCSVI but no CNS lesions. A viable animal model for MS needs to exhibit both phenomena – end of story. Such a realization will cause great gnashing of teeth in the wide world of MS research.

It is also not a stretch to predict that fear and loathing in the MS research community will turn to anger and I hope Dr Zamboni is prepared for some blistering attacks on both his work and his character. Hell hath no fury like a researcher proven wrong or disenfranchised. Finally, I won’t belabour the fears and anger of both the clinicians and the researchers regarding the potential loss of all that drug company largesse and research money which has been a bonanza over the past 15 years.

That brings us to the drug companies that supply the drugs that currently are used to treat MS or are in development. I have no doubt these companies must be having hand-wringing meetings these days to discuss the threat of a potentially effective, non-drug treatment for MS. The boardrooms must reek of fear and loathing when the obvious implications of the Zamboni discoveries are discussed. The bottom line is that there are tens and possibly hundreds of billions of dollars at stake in the foreseeable future and the drug companies are not going to let that kind of serious cash simply disappear without a fight. It is impossible to predict how the companies will deal with this real threat to their bottom lines and stock prices but you know it is not going to be pretty.

Finall,y I suspect there is a lot of fear and loathing going on at the national MS societies in the countries with high rates of MS (e.g. Canada). For the MS Society of Canada this has been a public relations disaster which potentially will translate into a loss of revenue. The most obvious, embarrassing aspect of this fiasco is the fact that MSSOC wasn’t even aware of the Zamboni research until mid October when they put up on their website a few, pathetic paragraphs on CCSVI that were cribbed from NMSS. They had absolutely no plans to fund any research on CCSVI until the CTV documentary put a gun to their head and they then hastily cobbled together a press release (in which Dr Zamboni’s name was mis-spelt) and issued a call for CCSVI research proposals.

The big question is why, with their blue-ribbon scientific advisory board, did MSSOC have no clue about CCSVI when papers on the subject began appearing in 2006 and major contributions were publicly available in late 2008 and early 2009. Were all their scientific advisors asleep at the switch? Assuming these renowned researchers read the scientific literature, do they have they the ability to recognize a watershed contribution when it crosses their desk? The fact CCSVI went unnoticed by MSSOC for more than a year is cause for serious concern about the competency of the organization in terms of providing reliable and timely scientific information to their members. What other important information is currently out there going unnoticed by MSSOC and its scientific advisors?

To sum up, Dr Zamboni’s amazing and groundbreaking discoveries have induced a wide variety of emotions in the different factions of the MS community. Such emotions are going to make it even harder for his findings to be properly tested and, if proven to be correct, to be incorporated into clinical practice. Regardless, it is important to realize that such strong emotions exist and to be cognizant of the different and somewhat antagonistic views and goals of the two groups that comprise the MS family – those that live with MS and those that live off MS.

article can be found here

Sunday, December 20, 2009

Interest in CCSVI for Multiple Sclerosis is Growing

My Thanks to Karen Hart in Florida for providing me with the information found below, and she thanks Peggy Starks for sending it to her


"Dr. Zivadinov in Buffalo is now starting a new study, recruiting 1,600 adults and 100 children, half of them MS patients. He plans to use ultrasound and MRI scans to confirm if those with MS also have CCSVI and if their family members have the abnormalities too.

Prof. Mark Haake, a neuro-imaging scientist at McMaster University and Wayne State University in Detroit is also intrigued by Zamboni's findings. He has long been seeing iron deposits in the brains of MS patients using a specialized MRI analysis called SWI - specific weighted imaging. When he saw Zamboni's initial publications, he immediately contacted the Italian doctor and began collaborating.

Population studies under way

Haake too is initiating a study, asking neurological centres across North America and Europe to take some extra MRI scans of the neck and upper chest of MS patients. The scans can then be electronically sent to his research team for analysis. He believes this grassroots approach could spur larger and more in depth studies. He's hoping he can engage MS specialists and vascular surgeons, interventional radiologist around the world to study the theory and then move to diagnosing and treating MS patients quickly.

"I think patients do play a role, because there are millions and millions of dollars donated to MS Societies and a lot of money set aside by the government to study MS research and right now, 99.9 per cent of that money goes somewhere else," he told W5.

» Read More

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National MS Society Hosts Kids Camp

Below, is a reason why I continue to raise funding for the MS Society - Stuart


South Florida
-

The National Multiple Sclerosis Society South Florida Chapter recently held its annual Kids Coping Camp at Camp Owaissa Bauer in Homestead, Florida. The weekend program gives children ages 7-12 the opportunity to share and explore ways to cope with the daily pressures of living with a parent or grandparent with multiple sclerosis.

The kids who attend the program emerge as leaders, form long lasting friendships, foster independence in a supportive atmosphere away from their everyday responsibilities and just have fun. Camp activities included: swimming, arts and crafts, hayrides, sports, nature trails and bonding around the camp fire.

“Children who have a parent or grandparent with MS, usually have to grow up a little faster than children with able bodied parents,” said Karen Dresbach, president of the National MS Society South Florida Chapter. “Our Kids Coping Camp program is a great way for young children who have a common bond to make friends, learn more about MS and to have good time.”

For more information on Kids Coping Camp or other National MS Society South Florida Chapter programs, visit www.nmssfls.org or call 1-800-FIGHT-MS (800-344-4867).



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About Multiple Sclerosis

Multiple sclerosis interrupts the flow of information between the brain and the body and it stops people from moving. Every hour in the United States, someone is newly diagnosed with MS, an unpredictable, often disabling disease of the central nervous system. Symptoms range from numbness and tingling to blindness and paralysis. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are moving us closer to a world free of MS. Most people with MS are diagnosed between the ages of 20 and 50, with more than twice as many women as men being diagnosed with the disease. MS affects more than 400,000 people in the U.S., and 2.5 million worldwide.

The National MS Society is dedicated to achieving a world free of MS funding more research, providing more services to people with MS, offering more professional education and furthering more advocacy efforts than any other MS organization in the world. Learn about your options by talking to your health care professional and contacting the National MS Society at www.nationalMSsociety.org or 1-800-FIGHT-MS (344-4867).


source for this article: dBusinessNews

Posted on:
Friday, December 18, 2009 04:12 PM
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An Interview with a fellow MS Blogger - Trevis Gleason

This is a good read for EVERYBODY affected by Multiple Sclerosis



An Interview with Trevis Gleason About his Multiple Sclerosis

My multiple sclerosis interview: it seems ages ago now that we offered you an opportunity to interview me, doesn’t it? The summer has slipped away and my schedule has compressed as I move closer to my wedding (October 10, Rusty). For those of you just joining us I posted a blog topic that allowed you (the MS community) to post any questions you might wish to ask me about my multiple sclerosis via the comment section. The questions below are the result of that post. You put great thought into your questions and I wanted to do the same for my answers.

So, at long last, here it is your interview with me. I hope you enjoy. –Trevis!

Click here to be re-directed to his blog to read this in-depth interview and his logic answers.


If you want, return here to tell me what you think of his answers, by leaving a comment...




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