This Is MS Multiple Sclerosis Community: Knowledge & Support

Below are two blogs from CCSVI-Locator. The 1st by Mary Bereskoff reads very much like a fairy story with both good and evil characters -
Mary has titled her piece "How the Gentle CCSVI Rebels Will Win the Liberation Wars". When she writes about the "CCSVI Rebels" I have to think of the many members of the TiMS family who regularly provide input into the forums - I won't embarras you but you know who you are.

http://ccsvi-ms.ning.com/profiles/blogs ... es_network

The 2nd blog is a letter written to our Minister of Health regarding the recent decision not to fund treatment trials across Casnada following the recommendation of the Canadian Institute for Health Research and the M.S. Society of Canada. The writer has gone to great lenths to provide our Minister of Health with information on the biased nature of the joint Committee as well as pointing out the misleading information and the lack of facts presented in the Recommendation.

http://ccsvi-ms.ning.com/profiles/blogs ... e-canadian

I highly recommend both of these to all of the readers on this site.
I just wish I could write like those two people !!!

I sit here in my wheelchair contemplating what has happened.

A panel of blinded neurologists has won this day.

In the face of massive patients testimony the federal government has chosen to let the worst MS patients simply burn.

They will not ask. They will not act.

I can feel the anger grow.

I join in where I can. I post, I vent but it is not enough.

I feel I am part of a rising mob and we are scanning for the enemy.

When we find them we will break from our bonds.

This is bad.

I want to pull them down.

I want blood.

It’s just me venting. I know the only way is still reasoned and respectful. I actually do believe there is no enemy. There is only another point of view. We must continue to counter it. They will move but it may wait for when a court decides or when the VSs and IRs come with their stories in force.


CharlieC

Thanks CIHR,

Using scientific protocols is the only way to conduct proper research.

Most unfortunate about those thousands (yes, thousands) of MS patients who
will lose the use of their limbs, whose chronic pain will increase, whose
bladder control will disappear, who will go senile, who will go blind, who
will die.

A quicker study would be to test the hundreds of Canadians who have gone
abroad and had treatment. The neurologists have the tests from before.

Oh, sorry, I forgot myself for a second. People getting better isn't
science. It's just anecdotal stories.

What was I thinking? Eye witness testimony is good in court but it sure
isn't science.

Thank Goodness that the CIHR is on the job and proper science is ruling this
day.

Best not to mention those extra years of horrific decline in the mean.

It's important to remember the CHIR and to properly thank them when we get
the chance. Remember the CHIR and their collaboration with those good folks
at the MS Society.

Remember them well.


CharlieC

I actually do believe there is an enemy. The enemy is the haughty, game-playing, egocentric group who know only how to tear down, and not how to care for us. They actually believe they are defending science against a disorganized attack. They are dangerous and powerful. They see only their own ends, no matter what the means.

I hope neither of us has to meet up with one of these.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Follow the money.

1. MSSOC (Canada) says it will fund $200,000
2. MSSOC (Canada) changes mind, says $200,000 per year of three years
3. Both US and Canadian MSSOCs announce the same $2.4 million, to be divided into 7 studies.
- so if divided equally each study could have $342,857.14
- over 3 years that is $114,285.71 per year per study.

This will not buy coffee for a reasonable sized study.

If only spending $9,523.81 per month, that will not go very far. Seven *very* small studies for 3 years.

But only 3 studies in Canada. That is, $114,285.71 per year for 3 years for three studies. That is roughly $1.028 million for Canada, the rest for the US.

But the MSSOC (Canada) has asked Health Canada for $10M. If divided over the same 7 studies that's $5.7M for the US, and $4.3M for Canada.

But hey, didn't we just give the US taxpayer $5.7 of our hard-earned Canadian taxpayer dollars?

Well, it's all the same disease. They just have more studies than us. But why don't *they* come up with their own $5.7M? They have much more than we do, to start with. Shouldn't they be coming up with 10X our $1M, to fund their own studies? They are getting $5.7M of our money and it's going to extend pretend studies that could never have been finished for the original $2.4M of bi-national MSSOC money. They will be able to finish them now. After 3 years.

Or we could just fund a few of our own, non-CCSVI studies, and melt through the $10M a lot faster. Especially if we don't do anything so rash as a national Liberation trial.

That would probably *end* (and end us) in only a few months, and we'd have to give all that money to individual provinces, and all that that entails. Not so smart.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

1eye, if you ever get any ideas on how we as a community can help the worst off (aka the EDSS9+) get treatment, I'm on board. It is a medical 'triage' situation. All I've got is writing to the politicians to argue for compassionate care. Or fund-raising to pay for airlifts to treatment. I don't know.

I have given it some thought, as I too think it is a humanitarian, medical, political and scientific disgrace. PM me if you are interested. all I will do is copy you on an email to Dr. Duncan. Her reply did not seem to be negative about it, and believe me I can use all the non-negativity I can get! Isn't she a saintly personage?

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Please, count me in!

Me too.