Dr. Ashton Embry, on National MS Societies & CCSVI

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

Postby cheerleader » Tue Aug 31, 2010 11:13 am

marcstck wrote:Don't forget, I too have a precious loved one with a malformed venous system, namely myself. I don't use that as an excuse to lash out at those who don't deserve to be the recipients of wrath or fury. He'd do better to single out the bastards behind the decision-making process by name, rather than casting so wide a net that it entangles far too many of the innocent, thereby lessening the impact of his otherwise well-crafted words.


Read, registered and agreed.
So, I'll go on record and name the bastards:

MS Society of Canada

Medical Advisory Committee
Chair
Dr. V. Wee Yong, Calgary, Alberta

Members
Dr. Virender Bhan, Halifax, Nova Scotia
Dr. Joan Boggs, Toronto, Ontario
Dr. Samuel David, Montreal, Quebec
Dr. Anthony Feinstein, Toronto, Ontario
Dr. Mark S. Freedman, Ottawa, Ontario
Dr. Rashmi Kothary, Ottawa, Ontario
Dr. Luanne Metz, Calgary, Alberta
Dr. Trevor Owens, Denmark
Dr. Christina Wolfson, Montreal, Quebec
Dr. John Richert, National MS Society Liaison (USA)
Dr. Jack P. Antel, Montreal, Quebec (ex-officio)
Dr. Paul O'Connor, Scientific and Clinical Advisor (ex-officio)
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Flabergasted

Postby Gordon » Tue Aug 31, 2010 11:32 am

They are scum, they will go to jail. They will be held accountable in this life and the next.

As I said the MS societies have infested our government and governments around the world.

Just infested.

Like cock roaches, they just keep coming back, and back and back, cut thier heads off and they just come back.

Lets focus on our own people. Enough is enough.

I am pucking and SO terribly embarrassed to be a Canadian.

Sorry World, Canada is broken. Please do not look to Canada as a guide for your country.

Gordon
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Re: Flabergasted

Postby VeeBee » Tue Aug 31, 2010 11:51 am

Gordon wrote:I am pucking and SO terribly embarrassed to be a Canadian.

Sorry World, Canada is broken. Please do not look to Canada as a guide for your country.

Gordon


I don't know Gordon, Canada got the rejection first, your "canadian crap" society could have been anywhere. There's no shame in being told no first.

I don't think there is a MS Society in Kuwait so their yes might not be counted so technically Canada might still get a yes, first.
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Postby cheerleader » Tue Aug 31, 2010 12:01 pm

I've done the research on the doctors who make up the medical advisory panel in Canada. Like Marc said---it's not the employees of the MS societies. It's the doctors who make the decisions on where the money is allocated and which research it considered legit. Note--most of the docs in Canada have ties to MGill University. Here are all of their profiles:

link to profiles
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dx dual jugular vein stenosis (CCSVI) 4/09
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Re: Flabergasted

Postby scorpion » Tue Aug 31, 2010 1:10 pm

Gordon wrote:They are scum, they will go to jail. They will be held accountable in this life and the next.

As I said the MS societies have infested our government and governments around the world.

Just infested.

Like cock roaches, they just keep coming back, and back and back, cut thier heads off and they just come back.

Lets focus on our own people. Enough is enough.

I am pucking and SO terribly embarrassed to be a Canadian.

Sorry World, Canada is broken. Please do not look to Canada as a guide for your country.

Gordon



8O Dude relax. Seriously.
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Postby Billmeik » Tue Aug 31, 2010 1:11 pm

you know what's good about the ms->ccsvi vs ccsvi->ms debate is

they both agree ccsvi exists.
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Lack of Accuracy by Ashton Embry

Postby MarkW » Tue Aug 31, 2010 1:19 pm

I agree with marcstck's posts on this article. Like Marc I wish to see the Canadian MSS medical advisors attacked. However, all attacks must be 100% accurate. It took me many days to prepare for my Daily Telegraph interview but what made it worthwhile was an MS Research Nurse's comments on it - 'fair and balanced'.
Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby frodo » Tue Aug 31, 2010 1:48 pm

Hi Mark. Just a couple of things about your points.

marcstck wrote:
In the above treatise, Mr. Embry states of MS Society staff members that "Their salary and benefit packages are on par with workers in similar jobs in both the private and public sectors." This is categorically untrue, and I take personal umbrage at this statement, as my wife has in the past worked for several nonprofits at considerable sacrifice to her potential income.


You can query the workers of any firm and you will see that they consider themselves below the average salary in their field. Maybe this could be the case of your wife. Even if she is earning more now, you should think that she also have more experience and therefore you cannot compare with her previous job.

marcstck wrote:Even the higher-ups work for considerably less than they could make in the private sector. Joyce Nelson, president of the US NMSS, receives a salary of slightly under $500,000 per year. Certainly nothing to sneeze at, but a CEO running an organization of similar size and scope in the private sector could easily make 3 to 4 times as much money in base salary, before bonuses and stock option packages kick in.


The question is, could this man be a CEO in a private firm? probably not. This kind of posts are not for anyone. You need contacts and recommendations. Probably he used his cards and that was the best post he found.

marcstck wrote:Here in New York, mid-level managers at Wall Street firms (and there are thousands of them) would turn their noses up at such a "paltry" salary. Similarly, scads of lawyers bring in higher annual earnings. When I was still able to work, I was employed by one of the major entertainment companies, and at least 100 people in the building where I worked made salaries in excess of that earned by Ms. Nelson. I'm not defending such exorbitant pay in the private sector, as a matter of fact I find it extremely nauseating. I'm simply pointing out that somebody with Ms. Nelson's experience and skill set could make far more money in the private sector than she currently makes working at the MS Society.


I find right that a private firm pays their CEOs as they want. When you ask money from the people and you use it to pay that kind of salary to yourself, there is really something wrong with that.

marcstck wrote:Furthermore, Mr. Embry asserts that "The staff members are like soldiers who do what they are told and are not expected to contribute to the scientific or public policies of the society. They are simply the “go-betweens”, the neurologists and the all those seeking information from the society. Notably, most staff members are not affected by MS. ".

[...]

Many of them have been personally touched by the scourge of MS. Do they contribute scientifically? Of course not, they're not scientists.


What you say here and what Ashton says is more or less the same. Nobody is saying that they are not good persons. Just saying that they do not question medical decisions of the association.
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Postby cheerleader » Tue Aug 31, 2010 1:59 pm

Here is the complete CIHR report.

link


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Postby CureIous » Tue Aug 31, 2010 2:51 pm

cheerleader wrote:Here is the complete CIHR report.

link


cheer


And to think, after all this time it's still getting back to "we can't do ultrasound therefore...".

At least I found some liner for the bird cage. "There's no studies, therefore we can't study it".

I note they had one MS patient participant, government reps, and the guys we already knew what they would say before they said it. Then as is oft the case in this debate, they overuse the 2009 Zamboni study, highlight it's shortcomings, give absolute weight to the German studies with nary a whimper, and overstate a bunch of obvious stuff about what we don't know. After all, the discussions were "open, animated, and frank". Uh huh. Did that include hundreds of patient testimonies? Don't answer.

Then of course highlight the Cure word right off the bat, wouldn't want to set the bar too low for CCSVI, Mt. Olympus will do.

I think they once again are underestimating the public's resolve here. They obviously have parsed this document very carefully before the meeting ever convened, i.e. dog and pony show. The "consensus" was reached long before seat met table, on how to proceed in dealing with this. The NMSS tried this early on, then of course reversed course with some trinket level studies to quiet the masses. This doesn't appear to be any different, they want one thing right now: time. Space, room to work. They just don't seem to be working towards the same goal as the rest of us, namely to get this thing studied, and studied good, where it can have some teeth.
By playing these delay games, they (the purse string holders, the only ones that matter from a funding perspective) are then able to frame things as they see fit. They couldn't care a whit that the Zamboni's of the world would happily welcome a multi-disciplinary approach, I think we know who "owns" MS right now, and they want the same with CCSVI, perhaps make it a "subtle side effect running concurrent with the disease in some individuals". Which is why they spend so much effort in tying in the term CCSVI with Zamboni. Put a slash in there, call it "Zamboni's CCSVI". That isolates it. Once that's done, just laser focus on Zamboni's 2009 study and call it a day.

I think though that they all severely understimate the will of the people here. I see this as only having a double-down galvanizing effect. MS'ers by nature are fighters, they have spent a goodly portion of their lives as a whole, fighting to just get through the day. Politicians and Dr's do not intimidate the average MS patient, especially the long termers. They've seen a lot come and go after all, what's one more Dr., group of them, or especially spineless finger-in-the-wind politicians?

What they cannot control however, is what is going on right now in the United States, yes, they throw out the IRB spike strips in our hot pursuit of scientific concrete, so we have Hubbard, Stanford, Georgetown, and many many other side roads to go down. Soon, there will be more concrete evidence, in publication, they cannot stop all of them after all. When that happens, that bird cage liner of a report will be a reminder to us all, that movements don't rise and fall on the one ANYTHING, person place or thing. The many parts scattered around right now will build a permanent roadblock to this kind of tripe.

M.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Chrystal » Tue Aug 31, 2010 3:01 pm

Cheerleader,

Thank you for all the research you have done and information you have provided.

This is all so sickening. The majority of listed Participants at the CIHR & MSSC meeting included
- members of the MSSC medical advisory board
- member of the MSSC Board of Directors
- neurologist recipients of the MSSC's grants
- neurologist directors of MS Clinics
- neurologists who made disparaging remarks agains CCSVI

WHY wasn't anyone with first-hand knowledge about CCSVI invited to the meeting???? Why wasn't Dr. Sandy McDonald included...as a vascular specialist who knows how to scan and detect CCSVI and has treated 6 patients...and witnessed their improvements???? Why? Because they do not want to hear the truth. They want to spew their BS, instead. Let's keep talking about studies with poor results and not mention that they didn't follow Dr. Zamboni's protocols or use the same equipment. Let's use the word "similar" regarding the equipment used in these other studies, and hope that the CIHR doesn't question. Lucky for the MSSC, the CIHR bozos didn't question this.

Similar = alike but not identical, you bozos at the MSSC and the CIHR!!

Why weren't any MSers invited to attend? MSers who have already been scanned and treated?

The MSSC CEO, MSSC Sr. Vice-President of Research & Programs and MSSC Assistant Vice-President of Research & Programs attended. These people sat quietly at the CCSVI Info Session in Toronto and refrained from correcting their expert neurologist's inaccurate response to an MS patient about the Buffalo study...assuming they were even "aware" of the accurate information.

The CEO and VP of Research & Programs have been copied on all correspondence regarding the deletion of the correction of their experts incorrect answer...and they have not acknowledged or responded to any of the questions asked of them.

These people are not equipped to advise on anything....except how to delete truths from webcasts so that you and your experts don't look like bozos....how to remain "unaware" of timely and accurate information.

MSSC, endBS!!!

Cheerleader and Dr. Embry, thank you for your tireless efforts on all our behalf.
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Postby marcstck » Tue Aug 31, 2010 3:18 pm

cheerleader wrote:
marcstck wrote:Don't forget, I too have a precious loved one with a malformed venous system, namely myself. I don't use that as an excuse to lash out at those who don't deserve to be the recipients of wrath or fury. He'd do better to single out the bastards behind the decision-making process by name, rather than casting so wide a net that it entangles far too many of the innocent, thereby lessening the impact of his otherwise well-crafted words.


Read, registered and agreed.
So, I'll go on record and name the bastards:

MS Society of Canada

Medical Advisory Committee
Chair
Dr. V. Wee Yong, Calgary, Alberta

Members
Dr. Virender Bhan, Halifax, Nova Scotia
Dr. Joan Boggs, Toronto, Ontario
Dr. Samuel David, Montreal, Quebec
Dr. Anthony Feinstein, Toronto, Ontario
Dr. Mark S. Freedman, Ottawa, Ontario
Dr. Rashmi Kothary, Ottawa, Ontario
Dr. Luanne Metz, Calgary, Alberta
Dr. Trevor Owens, Denmark
Dr. Christina Wolfson, Montreal, Quebec
Dr. John Richert, National MS Society Liaison (USA)
Dr. Jack P. Antel, Montreal, Quebec (ex-officio)
Dr. Paul O'Connor, Scientific and Clinical Advisor (ex-officio)


Joan, thank you. Now, that's a valuable list. Instead of using the shotgun approach, which puts little holes in lots of people, we need to take on the role of snipers, carefully targeting each of the people on the above list with rational, scientifically sound arguments as to why their actions are directly leading to the ongoing suffering of an untold number of MS patients.

The problem with essays such as Mr. Embry's is that even if one of the "powers that be" started reading it, the minute they ran into distortions and inaccuracies the delete button would be pushed or the letter would be thrown into a wastebasket.

Furthermore, statements of raw anger damage the CCSVI movement by equating it with a "lunatic fringe". Just as Martin Luther King preached back in the 60s, we must be careful how we present ourselves, because given the slightest opportunity, people like those on the list you provided will dismiss CCSVI activists as troublemaking nut jobs. If we want to be taken seriously, we must present ourselves in a deadly serious, fact-based manner. However high emotions run, it's best to vent them amongst each other, and present the world a steady but extremely urgent rationale for the immediate commencement of CCSVI treatment studies.

To borrow a phrase from the civil rights movement in the 1960s, it's important for each of us us to "keep your eyes on the prize"…
Last edited by marcstck on Tue Aug 31, 2010 11:47 pm, edited 1 time in total.
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Postby marcstck » Tue Aug 31, 2010 3:34 pm

frodo wrote:Hi Mark. Just a couple of things about your points.

marcstck wrote:
In the above treatise, Mr. Embry states of MS Society staff members that "Their salary and benefit packages are on par with workers in similar jobs in both the private and public sectors." This is categorically untrue, and I take personal umbrage at this statement, as my wife has in the past worked for several nonprofits at considerable sacrifice to her potential income.


You can query the workers of any firm and you will see that they consider themselves below the average salary in their field. Maybe this could be the case of your wife. Even if she is earning more now, you should think that she also have more experience and therefore you cannot compare with her previous job.

marcstck wrote:Even the higher-ups work for considerably less than they could make in the private sector. Joyce Nelson, president of the US NMSS, receives a salary of slightly under $500,000 per year. Certainly nothing to sneeze at, but a CEO running an organization of similar size and scope in the private sector could easily make 3 to 4 times as much money in base salary, before bonuses and stock option packages kick in.


The question is, could this man be a CEO in a private firm? probably not. This kind of posts are not for anyone. You need contacts and recommendations. Probably he used his cards and that was the best post he found.

marcstck wrote:Here in New York, mid-level managers at Wall Street firms (and there are thousands of them) would turn their noses up at such a "paltry" salary. Similarly, scads of lawyers bring in higher annual earnings. When I was still able to work, I was employed by one of the major entertainment companies, and at least 100 people in the building where I worked made salaries in excess of that earned by Ms. Nelson. I'm not defending such exorbitant pay in the private sector, as a matter of fact I find it extremely nauseating. I'm simply pointing out that somebody with Ms. Nelson's experience and skill set could make far more money in the private sector than she currently makes working at the MS Society.


I find right that a private firm pays their CEOs as they want. When you ask money from the people and you use it to pay that kind of salary to yourself, there is really something wrong with that.

marcstck wrote:Furthermore, Mr. Embry asserts that "The staff members are like soldiers who do what they are told and are not expected to contribute to the scientific or public policies of the society. They are simply the “go-betweens”, the neurologists and the all those seeking information from the society. Notably, most staff members are not affected by MS. ".

[...]

Many of them have been personally touched by the scourge of MS. Do they contribute scientifically? Of course not, they're not scientists.


What you say here and what Ashton says is more or less the same. Nobody is saying that they are not good persons. Just saying that they do not question medical decisions of the association.


Frodo, thanks for your comments.

The indisputable fact is that people working for nonprofits definitely earn less than those doing the same job in the private sector. It's not simply a matter of perception, but of dollars and cents.

For the record, Joyce Nelson is a woman, not a man. And yes, she does have the qualifications to be the CEO of a major corporation. The NMSS is a huge organization, and in order to attract the level of executive needed to run such an organization, a competitive salary must be offered. Ms. Nelson's income is on par with people in similar positions at other large nonprofit organizations. As I noted, the NMSS only spends about 15% of its revenues on administrative and fundraising costs. This is less than many other highly regarded MS nonprofits, such as The Accelerated Cure Project, and The Myelin Repair Foundation.

I agree that salary structure in today's business environment is very out of whack, but that's playing field that nonprofits are forced to operate on. You definitely want quality people manning positions of power, and in order to get them, a competitive compensation must be offered.
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Postby garyak » Tue Aug 31, 2010 7:48 pm

I can't get any angrier tonight cause I can barely type i'm so weak. This does all make sense and makes me want to puke. t-3 weeks for me.
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Postby MrSuccess » Tue Aug 31, 2010 10:18 pm

garyak - don't know if this helps reduce your anger and frustration .... but it sure has calmed me down on this frustrating situation ..... :twisted:

As we now know ....the CIHR report was not what CCSVI people wanted to hear ..... however ...... this is what I read on another news site :

CIHR President Alain Beaudet has written a letter to Health Minister Leona Aglukkaq advising her of the following recommendations :

- Establish a scientific working group made up of four investigators from Canada and three from the USA funded by the MS Societies in both countries , and a representitive of the provinces and territories, to monitor and analyze results from studies investigating CCSVI worldwide.The group should hold it's first meeting this calender year.

- Based on the outcomes of these studies, the scientific expert working group should reach conclusions regarding the association [ or lack thereof ] between CCSVI and MS , and a common standard for reliably
diagnosing the condition using imaging or other techniques .

- Depending on these conclusions , the scientific expert working group should make recommendations on further studies including , if appropriate , a pan- Canadian , interventional clinical trial.

Mr. Success is pleased with this letter to the Health Minister Leona Aglukkaq.....

Now ..... let's move on to deciding who .... is going to sit on the scientific expert working group. :idea:

Let Health Minister Aglukkaq aware of your choices ..... but most important .... who should NOT be on this team . :idea:


I think we are progressing .




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