This Is MS Multiple Sclerosis Community: Knowledge & Support

(Re: "MS 'conspiracy' must be stopped, in the July 13 edition of the Examiner)

In response to the excellent letter of the day by Steven Price, he has hit the nail on the head. I write this letter to both agree with his thoughts and expand on them.

My wife is also a multiple sclerosis (MS) sufferer and has tested positively for CCSVI by Dr. Sandy MacDonald, whose support of MS patients has been nothing short of heroic.


I believe there is another element of this conspiracy that Mr. Price does not touch on. The pharmaceutical industry holds influence over these types of issues. It has a huge lobby and many political connections.

As Mr. Price says, this is about money. The drug companies have been working on and introducing treatments for MS sufferers and have no doubt invested a great deal of money in doing so.

Along comes the Liberation treatment, which is shown to be infinitely more effective than any chemical treatment, and the very society that claims to advocate for MS sufferers, as well as many neurologists, describe it as a 'hoax.'

Much of the MS Society of Canada's fundraising money ends up going to the pharmaceutical companies for

'research', yet funding required for the 'research' of CCSVI is a pittance.

I think we all agree that CCSVI needs to be studied but as Mr. Price said, study the immense amount of evidence that already exists. The benefits of this treatment expressed in terms of percentages of positive outcome absolutely dwarfs any pharmaceutical treatment to date.

Would common sense not dictate an immediate and exhaustive look at this? Untold amounts of suffering could be avoided and our stressed medical system could be spared massive amounts of expense if this treatment proves to be as effective as it appears.

This treatment is not utilizing some unknown or new technology, it is merely employing it in an another part of the body. The refusal by the medical field to support this is nothing short of suspicious.

http://www.thebarrieexaminer.com/Articl ... 0866&auth=

I am less paranoid than you in some ways, more so in others. Big amounts of money like those being received by MS drug mfrs. scare me to death. I am at least from popular entertainment and reading about things like child soldiers, aware that to some it is much more important than humanity, life included, and that individual lives are as dust to those people. Or numbers. I am afraid large amounts transacted involuntarily often result in a lot of deaths.

However I am also more paranoid than you about the MS Society's intentions. They also have a stake that is not insignificant. But the studies. They wave the figure $1.4 million around a lot but that is for seven me-too studies, in 2 countries, some of which are by people who would like nothing more than to gather evidence against Liberation.

So why are they giving such small amounts, that will not fund much progress either way?

I think it is because the Canadians, anyway, are counting on receiving a much larger amount, from the Canadian Federal Government, which, I might remind you, has leaned heavily on them to justify their inaction, and referred to them as if they were infallible oracles (even though the Health Minister does not know they are a Society, not an Association).

The branch-plant Canadian MS Society will probably even share it with the US MS Society. So the 1.4 $M becomes 11.4 $M, affording many more opportunities to show generosity, while not changing the nature of the projects. I must say I have heard of exceptions, like the pediatric MS project. But perhaps they could try treating some people? Kids would be a big win, if they could be helped too.

War - good God, what is it good for? Absolutely nothing. Say it again. -Edwin Starr

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

i agree with all this. the ms society definitely has not been our friend and doesn't look like they plan to be anytime soon. but, i still feel that the drug co.'s and the dr.'s that benefit from prescribeing them and all the kick backs and big money involved when it became a society just treating sick people for a lifetime- are more aware than we realize- how this ccsvi has threatened their pot of gold. they are now looking at the blood flow in alzheimers now. the more ccsvi is helping us the more they will learn about other illnesses that can be helped or cured without drugging a person for a lifetime.

when reformed ms society was questioned, there was immediate clarification. Why? because he has the answers.
You wont find ms society doing that. most of their answers will avoid direct questions because deep down they know (and probably they know that we know) what they have been doing ...

I don't know. I could be lying in my spare time.

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

I encourage you to promote our right to be tested and treated for the symptoms of CCSVI. Fighting the MS conspiracy appears important but please forget it, don't waste your energy.
The key is getting people tested and treated (as private patients in most of the world). That provides solid evidence of many cases.
Kind regards,
MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 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

Theres billions of dollars at stake with the MS drugs.

Much less then that amount of money brings out the worst in people. All i can say is that if the companies felt at risk to lose this source of income. They will do anything in their power to stop it. What scares me is the amount of power billions of dollars have.

Its a perfect situation for them. Push all these almost useless drugs on everyone and bring in billions of dollars a year. While we sit back as pin cushions and still progress.

EXACTLY !

Maybe that's the mistake we're making, trying to convince others or ourselves, that anyone has a real stake. I mean, what can they really do? Like winter turns to spring, if people slowly stop buying that's the same as saying the sellers stop selling. They can't make what they can't sell. They're already stopping on their own.

So they shut down one production line and start up another. The person working on the line has to learn a different otherwise useless skill and go home and forget about that too...

What can anybody do to stop these millions from trying to get better? Nothing anybody can do. In the end it will not matter, if there is, or is not, enough scientific evidence for the most closed, or even open minds, all to be happily convinced. Sometimes our mental models just stop functioning, so we have to go find some that will take their place. Some times, something else to worry about.

It's just this painful transition we have to go through. Some won't make it. That's what we need to be concerned with. I think Liberation can dramatically prolong life.

At the same time, somebody asked me today, if it's safe from surgical mishaps, can it make you worse?

Well, if it makes you worse, as much as you can, you fix that also. Remember, some patients are so much older or have had worse damage getting worse for so long, that they just don't have the biological resources anymore to do the necessary nerve repairs. That's sad, and to be avoided whenever we can. Either (both to be hoped not) you run out of money, or things you can fix.

But life is a continuous struggle to make those repairs, and I think lately we've been seeing a lot more success than not. I've long had the motto: just stop me from getting worse and I'll take it from there. Seems to me that Liberation more often than not is slowing it down, or reversing it, or getting rid of it altogether. Often enough, any fool can see, to be very very well worth the finite but small risks. I would say that risk of worsening is so much larger as to make risk of accident negligible.

Even that, while finite, seems small. That is just my impression: I have not heard that the University studies or even the pay clinics who do stenting, are finding a big problem with worsening. Especially not accidental -- that was, so far, only very early on, and completely unnecessary now. Maybe they are just saving that for later, but I doubt it.

Much larger, IMHO, is the risk that a surgeon will think they do, but will not know what they are doing. From that perspective this push for treatment *is* happening too fast. The problem is not lack of evidence, or lack of documentation. Expertise is becoming less distant, and more common as we go.

But who cares about stats when they're sick? However unlikely a bad thing is, if it happens to you, it is once too many. That maybe is where Do No Harm comes in, and where patients have to trust doctors.

The good news, is seems a lot of disability and progression comes from May-Thurner. It is a known and treatable condition, insured if you have it. Drug companies are probably not even aware it is being studied.

If that's too much cheering, you must learn to share more.

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

Hey 1Eye take the following as good humour.
If you say that as pre-liberated you have a brain fog symptom
my god I can't wait for your post-liberated posts here!

Keep it up! your cruel logic is much needed

Take Care


Norm

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In a perfect world, my Neuro would like to be a vascular specialist.
'92 diag RR - '05 SP

On July 2nd a group of Canadians with MS had a meeting with a lawyer concerning the fact that angioplasty is not allowed for Canadians with MS. Angioplasty is an approved procedure in Canada and it is performed on the internal jugular veins. It is paid for by our Provincial Health Care. Except if you have been labeled with MS. Then it is called experimental and is not allowed. In fact clinics that test for CCSVI in Canada have been told to stop.

I have seen Canadians holding protests, marching, signing petitions and sending letters to their MP's and MPP's. This will not do anything. The advisory councils are not elected polititians. They do not care how many letters we write. They do not care if this is tested. This is all about money.

When I was at the meeting, I was sure we would raise $10,000 by the end of the week. Surprisingly this didn't happen. I don't know if we did not advertise enough. Or is this MS society is too fractured to respond But I have contributed. My MS group has contibuted. People at the meeting who have already had the angioplasty done have contributed. Do Canadians just not care? Or do they not understand?

Personally, I am on the list for Albany. I will go there, pay and have the angioplasty done. If I was cold hearted I would leave it at that. I did not need to contribute to this group trying to sue the Ontario government. But I do care. More than a person a day dies from MS in Canada. I care about those people and those that do not have enough money to go to the USA or elsewhere and pay. Why should this procedure be allowed for people with heart disease, cancer and kidney failure and not be allowed for people with MS.

The website is http://angioplastyforall.com