MS Societies step up their game

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

MS Societies step up their game

Postby foreignlesion » Sat Jun 12, 2010 11:24 am

MS Societies to Fund Research into Controversial Theory

After months of agitation from some patients, Canadian and U.S. societies put up $2.4-million to probe links between CCSVI and MS

Adrian Morrow

From Saturday's Globe and Mail
Published: Friday, June 11, 2010 8:34PM EDT
Last updated: Friday, June 11, 2010 9:36PM EDT

A sweeping new set of studies is aiming to determine whether there’s any merit to a controversial theory that blocked blood veins cause multiple sclerosis.

The theory, called chronic cerebrospinal venous insufficiency (CCSVI), was first proposed by Italian doctor Paolo Zamboni, and suggests that blocked veins stop blood draining from the brain, leading to an accumulation of iron, rather than the conventional thinking that MS is an autoimmune condition.

“This is a huge step in determining what the connection is between CCSVI and MS,” said Stewart Wong, spokesman for the MS Society of Canada. “The research that has been published to date has been limited.”

The announcement of the studies is after months of agitation from some MS patients and their families, who want the society to push for CCSVI treatments such as angioplasty to be made available to MS patients in Canada. On Saturday, CCSVI advocates will try to win seats on the MS Society’s board.

The $2.4-million studies, to be jointly funded by the MS Society of Canada and the U.S. National MS Society, will include some participants with MS and others in a control group.

Four of the studies will take place in Canada and three in the United States. They will use tools such as MRIs, ultrasounds and catheters to examine the structures of veins in MS patients and iron deposits in the brain.

The studies will not test possible treatments.

“The purpose of these studies is to build the building blocks to see if further clinical studies are warranted,” Mr. Wong said.

Article: http://www.theglobeandmail.com/life/hea ... cle1601709
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Postby dlb » Sat Jun 12, 2010 11:28 am

@ Foreignlesion,

cool name':idea:' .... ain't it the truth!! oh.... and then there is the irony!
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Idiots they are

Postby eveable » Sat Jun 12, 2010 4:54 pm

There is documented CCSVI evidence from at least 3,000 plus MS'rs and controls. The MS Society is funding more research? For 5 years? And there is a woman dying of MS in Barrie who has been refused the procedure?

http://www.thebarrieexaminer.com:80/Art ... ?e=2619856

There is only one way to show these guys who we feel. No more money or help to get money.
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Postby 1eye » Sat Jun 12, 2010 5:41 pm

While other doctors have agreed on the truth about the Treatment That Dares Not Say Its Name, these guys are still building building blocks. Neurologist are not sure if a Link or an Association is what they want, but they are willing to wait, and let the flow of money to their unrestricted grants and sponsorships go on for another while.

Meanwhile the patient in Barrie, and others elsewhere, stay on their deathbeds. Or die. Who will take the blame for all this pompous foot-dragging that's helping nobody but MS drug companies. Nothing they're selling is any use in that hospital room in Barrie.

"Drops of water turn the mill, singly none."
"Try - Just A Little Bit Harder" - Janis Joplin
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'MS' is over - if you want it
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Postby nicknewf » Sat Jun 12, 2010 5:42 pm

Eveable - that article was heartwrenching
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Postby happydance » Sat Jun 12, 2010 6:36 pm

I like the way the Canadian MS Society's announcement and the news storie's always have to include the U.S for a total of 2.4 million. Notice how they never give a breakdown to say $700,000.00 divided by 4 studies divided by 2 years = shit. 2.4 million sounds a lot better to anyone not following this story. Sorry Canadian MS Society I can still do math. It will take a lot more than $700,000.00 over 2 yeas to impress me.

Why 2 years to study 100 patients? Buffalo tested 500 people in about 6 months. What an insults to Canadian's.
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Postby foreignlesion » Sat Jun 12, 2010 7:17 pm

I find it unfortunate how much ire there is directed towards the MS Societies. Please listen to what I have to say before I get jumped on for standing up in their defense.

The MS Societies DO NOT decide what studies are conducted, but they DO provide funding for those that are.

MANY of the studies for CCSVI that are just now receiving funding were presented to the ethics committee months before the W5 episode aired in November. It has taken these researchers a very long time to even receive approval.

I GUARUNTEE, should much larger studies be approved, or ANY studies for treatment, the first place to fund them WILL be the MS Societies.

Cutting off funds to the MS Societies WILL HINDER the size and number of studies that will be conducted.

This being said, the MS Societies are doing a PITIFUL JOB of lobbying the various levels of government that are hindering the CCSVI cause. I also abhor the tight lipped and uninformative practices they incorporate. MS'ers DESERVE to be extremely well informed as to ALL the practices of those who CLAIM to represent them.

A four page monthly newsletter and an infrequently updated web page is a PATHETIC example of access to information.
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Postby Chrystal » Sun Jun 13, 2010 12:46 am

This may help make my thinking below more plausible...as reported in the Montreal Gazette, one Board member e-mailed members and potential members urging them to register their vote to re-elect the current Board members and prevent CCSVI supporters from getting on the Board. They wanted only the current people that obviously reflect their views and opinions on CCSVI..not people who are pro-CCSVI.

My thinking (and it may be faulty) is this...if the MSSC/their Board selects the international review committee and their own medical review committee is also selected by them...they have probably consistently selected members whose views are aligned with theirs...and so for all intents and purposes, they did in fact decide what studies would be conducted.
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Postby foreignlesion » Sun Jun 13, 2010 1:52 am

They have no say whatsoever as to what research is conducted. They only have a say as to what research they choose to allocate funds to. Any medical research conducted, MS related or other, passes through the same ethics committee which is a part of our health care system. The ethics committee is part of the College of Physicians and Surgeons. They are the ones who decide what research is allowed.

Whether or not any studies involving CCSVI treatment were up for the proposed allocation of funds and were denied is unfortunately something that is only known to the board and the review committee, but I have a strong belief that no such studies have yet been approved in Canada, and I think all such studies were halted in the U.S.
Last edited by foreignlesion on Sun Jun 13, 2010 2:50 am, edited 2 times in total.
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Postby foreignlesion » Sun Jun 13, 2010 2:01 am

It is my personal opinion, although as I have aforementioned I have a deep dislike of how secretive the MS society is of it's inner workings, they do not wish to have staunch proponents of CCSVI on the board because there are many other avenues that also still need to be explored and advocated. Concentrating all efforts into CCSVI advocacy could cost us many other opportunities and advancements, but as I also said before, they are not doing nearly enough.
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Postby lumpc1 » Sun Jun 13, 2010 9:44 am

I got an e- mail from embree that sums up what they are doing and it amounts to nothing, in favor of the pharma. it is not on his site and I have no idea how to post this attach to mail I recieved.
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Funding Lesion

Postby fiddler » Sun Jun 13, 2010 10:01 am

foreignlesion, you are right when you say that the MS Society of Canada does not directly decide the studies that researchers decide to take on. However, as people in the research community are well aware, "he who pays the piper calls the tune". It would take a pretty non-savvy, out-of-the-loop researcher not to know what kinds of research would receive funding from the MSSC. For that matter, I would be VERY interested in knowing what project proposals were not funded. It wouldn't be much use in asking why they were rejected, because I am certain that the reason given would be something like "we thank you for your proposal, but requests for funding exceeded available funds".
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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research

Postby 1eye » Sun Jun 13, 2010 10:41 am

I would like to know: in what sense do they not decide how an amount like 2,4 million is spent? It seems to me that only in the sense that they do whatever the neurologists on their boards tell them to do, do they not decide how much money is spent. Up until very recently it was unknown how much they intended to spend on CCSVI research, except that it was likely to be at least $200,001 a year. Well that did sound a piddly amount for a group supposedly dedicated to MS research, so, well, if we have to spend more, let's make sure 2 things: a) we don't give any of it to Haacke or Zivadinov or Dake and b) we give a lot of it to anti-CCSVI-theory research, because we're not convinced.

Not very non-transparent, in an ironic sort of sense.

Now I really hate to say anything against them. But just this morning some uniformed bicyclists came by my house (they were training). One of them had borrowed a road bike from me once, and this year they were going on the ride for MS. I told them about the doings at Parliament Hill, and to donate the money to Haacke instead.

This sort of thing is bound to get around. I don't think people at the protest May 5 were thinking about them, even though they had just given out FREE daffodils to the MPs. They were thinking more about dying MSers, because they were right in front of them.

Next time we get a chance, I think we should run a full slate of IRs and vascular surgeons, all favorable to Liberation. But that's just me.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby foreignlesion » Sun Jun 13, 2010 11:18 am

Theses are the studies that were funded.

•Dr. Brenda Banwell, The Hospital for Sick Children, Toronto, Ontario: studying vein abnormalities in children and teenagers who have MS, and healthy controls of the same age. The team is seeking to determine whether the veins are abnormal at an early age among pediatric MS patients. These findings will add additional depth to studies of CCSVI in adult MS. Fact sheet
•Dr. Fiona Costello, Hotchkiss Brain Institute, University of Calgary, Calgary, Alberta: examining a cross-section of people with MS compared to other neurological diseases and healthy volunteers. The team is seeking linkages between vein abnormalities and different aspects of MS activity and tissue damage to gain insight into the significance of differences in vein drainage and their implications for the future treatment of MS. Fact sheet
•Dr. Aaron Field, University of Wisconsin School of Medicine and Public Health, Madison: using magnetic resonance (MRI) scans to generate detailed images of the head and neck veins in people with early and later MS, healthy volunteers, and controls with other neurological conditions. This team is also using the ultrasound techniques originally used by Dr. Zamboni. If they obtain similar results as those published by Dr. Zamboni, it would represent a powerful confirmation of the CCSVI hypothesis and help lead the way toward trials of appropriate treatment. More information: www.nationalmssociety.org/ccsvi
•Dr. Robert Fox Cleveland Clinic, Cleveland: studying people with MS or who are at risk for MS (CIS) and comparison groups including healthy volunteers and people with brain atrophy (shrinkage) from Alzheimer’s disease. This team is using the ultrasound techniques originally used by Dr. Zamboni, as well as magnetic resonance studies of the veins (MR venography), MRI scans of the brain, and clinical measures to determine MS activity and atrophy. They are also examining neck and spinal cord tissue from MS patients at autopsy to provide a tissue-based evaluation of CCSVI and its possible relationship to MS. More information: www.nationalmssociety.org/ccsvi
•Dr. Carlos Torres, The Ottawa Hospital, University of Ottawa, Ontario: employing powerful MRI technology to explore vein anatomy and assessing for iron deposits in the brains of people with MS and in age-matched healthy volunteers. These studies work towards mapping out normal variations in brain vein anatomy and providing insight into CCSVI in MS. Fact sheet
•Dr. Anthony Traboulsee, UBC Hospital MS Clinic, UBC Faculty of Medicine and Dr. Katherine Knox, Saskatoon MS Clinic, University of Saskatchewan: studying the prevalence of CCSVI in people with MS and controls without MS, using catheter venography, ultrasound, and magnetic resonance venography. Unique to this study is the inclusion of family members, such as identical twins of MS patients who have not developed MS, in control groups. They also hope to verify the usefulness of techniques that would make it easier to screen for CCSVI. Fact sheet
•Dr. Jerry Wolinsky, University of Texas Health Science Center at Houston: replicating the ultrasound methods used by Dr. Zamboni to investigate the association of CCSVI with major clinical types of MS and in non-MS control groups. The team is also testing whether other imaging methods can confirm the ultrasound findings, while identifying the most reliable technique to screen for CCSVI. More information: www.nationalmssociety.org/ccsvi
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