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Interesting...

http://www.edmontonjournal.com/health/I ... story.html

This article's author is dead on. CCSVI is completely made up, and all the people doing research on it to determine its role in MS are crazy. There is absolutely NO way a problem with veins could cause the problems we see in MS, after all, everyone KNOWS MS is a result of: Well, we don't know, but it's not THIS!

Anyone else sick of this? Holler!

One of the first things I would do is stop describing Dr. Zamboni as "an Italian doctor" and start headlining him as "a prominent vascular surgeon" or "Director of the Centre for Vascular Diseases at the University of Ferrara." It has a different ring, doesn't it?

its kind of scary how important a paper from 1936 by putnam is to me. He blocked the veins in dogs and they got 'ms' . If that can be replicated cause and effect can be demoed.

Im thinking some candians highly invested in autoimmunity will still not believe it.

Freedman is now quoting Dr Zivadinov’s figures as 1/3 of normal people have CCSVI and half of MS patients! How long before he says it is half and half? No one who has so little respect for the truth can expect to be considered a scientist.

NotSoSick. Unless you are being ironic (in which case I agree with you) how can you go from saying ‘We don’t know what causes MS’ to ‘we do know it is not THIS?’ Surely the only possible logical connection is ‘We don’t know what causes MS’ so ‘we don’t know it is not this?’ Perhaps you can explain?

I think that a venogram is the only way to sort out the controls from the MSers (in my humble opinion) I think we will get more accurate figures when they allow the controls to have venograms in a study.

I guess when people in the community of MS have had a few disappointments over the years with the excitement of a possible new discovery which then gradually disappeared, it is understandible how these guys are cynical.
The true test of theory really is time. Relax. Whatever viewpoint that you take won't really matter until a few years have passed. In the meanwhile, its a new 'idea' with some 'old' roots, and now its time has come to be explored and tested, after all the autoimmunity theory has led to alot of dead ends. Someone used the term 'battleweary' for neurologists-think it was Dr Wheldon-and I think he got it right.

In the meanwhile, people will do as their conscience and health dictates them to do, some will campaign, others will sneer, some will hope like hell and get the procedure done. Others will be a more realistic, but still get the procedure done.
One thing is for sure,most of us will still be around to see how this pans out-i hope.

Usual lies continue in this article as well.
I wonder if the author is just a dummy representing ...

The veins narrowed again in almost half the patients.

narrowing does not prove the theory incorrect. Better methods to keep the veins open need to be come up with.

Another rarely reported detail is that Zamboni's research showed the most improvement in those with the mildest form of the disease

Does that mean mild improvements are unacceptable by patients. Let the patients decide that.

There are a number of trials attempting to duplicate his results but, so far, nothing has confirmed Zamboni's claim on a significant scale.

Freedman's stem cell study with 18 people will be lauded as a breakthrough, while 68 patient study is too less.

Inflating a tiny balloon in the blood vessel to increase blood flow.

????

We've seen the media hype that misinforms patients and the sensational headlines that mislead patients

If that media you are talking about had broken this news, you would not have probably written this article. Yes, I think that media did not take permission from necessary stakeholders, seems to be the reason for your ire.

AMcG:

I am being sarcastic. VERY!!! All I was saying is I don't see how these silly people can be so sure veins aren't involved in MS. It's like: "Oh, it CAN'T be this! Not that we know why it's NOT this, but it's NOT NOT NOT NOTNOTNOTNOTNOTNOT" What a bunch of babies.

Sorry if you thought I was serious. I guess I'm just tired today.

NotSoSick. In that case you are both pithy and witty and I applaud you.

Billmeik wrote:its kind of scary how important a paper from 1936 by putnam is to me. He blocked the veins in dogs and they got 'ms' . If that can be replicated cause and effect can be demoed.

Im thinking some candians highly invested in autoimmunity will still not believe it.

I'd be a little careful about interpreting Dr. Putnam's experiments. The dogs didn't develop clinical signs of MS; actually they didn't develop clinical signs of anything (or at least Dr. Putnam didn't wait for them before performing autopsy on the animals). The dogs did develop brain lesions, which may or may not have been similar to those seen in MS.

What he did to the dogs didn't really cause CCSVI. He shot, under high pressure, globules of different types of fat back into the cerebral veins of the dogs. Not really the same as clamping jugular veins.

RE: Is Italian doctor's MS treatment more hype than help?

“Joyce Perron, 58, who has multiple sclerosis, spoke at the B.C. legislature on May 5 about the government's unwillingness to fund a new treatment for MS.”

I don’t know what this particular speech was about, but I was at the corresponding protest in Ottawa. They were held across the country. I did not hear any speeches (from protesters or politicians) that asked for government funding.

The public misconception being propagandized in the media (and believe me, the media has been used) is that people with MS want the government to pay, to have this procedure done on them. Many cannot afford it, and will depend on the generosity of other Canadians.

But they will get ‘Liberated’ whether neurologists, or societies, or drug companies, or lawyers, or governments, or insurance companies want them to, or not. They/we need a hero like Henry Morgenthaler to get us out of back-alley fly-by-night clinics and into surgeons’ offices.

Insurance companies and governments will save money, if this procedure results in people stopping their existing medications, which are very expensive. I have not seen the ‘Italian doctor’ telling anyone to stop taking existing medications.

So insurance companies cannot be told it would save them any money. Anything they get out of it will be gravy.

I am not a gad-about-town type, since I have been housebound with ‘MS’. I have, though, heard of one former ‘MS’ victim, who has pursued and gotten a fairly good job. I have also heard, that one woman in Calgary, who got this treatment outside the country, has gone from being a ‘blogger’, to being very politically active in this movement.

Governments can not depend either, on the insurance savings. There is no accredited indication that MS is about to become any less of a problem in the forseeable future.

Except… the MS Society somehow thinks everyone would be CURED, but what do they know? They are not neurologists. A lot of good neuologists are members, on their boards, etcetera. But they can’t be said to be speaking for neurologists when they say:

"If all patients are given the therapy, no one will go in a trial."

This statement was made as testimony before a Parliamentary committee, by an 'MS' Society spokesman. It is typically pessimistic, however it could be reworded to say that (however unfortunate it may be for the industrial base around CCSVI/'MS') these people would all be, for other intents and purposes, CURED! Can’t have that.

The man (Dr. Murray) has unimpeachable qualfications (aside from expertise in neurology), and he has been helping ‘MS’ victims for many years. So all that can be surmised is that he did not read his speech before the committee thoroughly before saying it.

He could not have meant that 75,000 Canadians must be told they should not get this procedure because they are really the property of science, and of the brain specialists, and should not be depriving science of subjects for experiments by getting CURED!

The media have been abuzz, haven’t they? One might even say they’ve been abuzz with disinformation, but why would that happen? Dr. Zamboni took the high road of science, but who would believe he did it all for love, just to find a treatment for his sick wife? No one does anything only for love. One can always find an ulterior motive. It is not only for love that doctors with drug company sponsorship take their wives on their frequent scientific jollies to fabulous scientific tourist destinations.

It is not only for love that some scientists’ wives work for the same hospitals they do, and in closely, sometimes intimately, related research. It is not only for love.

Well, we’ve eliminated the government, the insurance companies, who else is there to pay for these procedures?

Oh yes, the patient. Actually this person is his or her own worst enemy. They must be prevented. They must be prevented at all costs, with the cooperation of our highest offices, our National Associations and Societies, from using the willing services of our most expert vascular surgeons and interventional radiologists. These services are sometimes freely given, but most often paid for in full. These lesser doctors can sometimes get a bit greedy, taking advantage of unsuspecting MS victims and trying to get a thousand or so of easy money.

You see, neurology and neuroscience really own those people. If ‘MS’ victims get cured outside of the protection of unimpeachable neurologists, brain specialists cannot be held accountible for them. Those countries are not in our control. Some of them, not even in drug companies’ control. For example, those bad people who are going to Poland, India, Bulgaria, Kuwait, and all those other backward uncivilized countries.

The name of the procedure, the “liberation treatment" is obviously a huge issue. People who receive it are not liberated from anything being done to them by the medical system. Our doctors do not use humans as guinea pigs. Mrs. Zamboni was never in such danger. To believe that any other patients in this more civilized country would be at any risk is utter nonsense.

“Haven't we learned anything? We've been here before.”

We've seen the media hype that misinforms patients that their blood collection system is flawed, and the sensational headlines that mislead people into thinking drugs like thalidomide and Vioxx are not safe -- only to later discover that the media was grossly misinterpreting and misrepresenting the medical story… Sorry, wrong examples…
Remember when the doctors were found to be misdiagnosing things like breast cancer, crib deaths, ulcers, post-partum depression? At least that's what the headlines said. But the truth was in the details, not the headlines. That’s why the governments and courts were needed.

“How about the 2002 study that led newspapers to declare that hormone replacement therapy (HRT) drugs were carcinogens that increased the risk of heart disease and breast cancer?”

Thousands of women were told by their doctors to stop taking hormones. Or not to start.

Perhaps because somebody might get sued if they weren’t? If their doctors believed that these drugs didn’t cause any trouble, why didn’t they put the women right back on them? Well, so what if they didn’t? GPs are stupid too.

“MS patients have also had to live with the hype and hope of other cures. In the 1980s, hyperbaric oxygen therapy was touted as a means of increasing blood flow to the brain and curing MS.”

Now with more modern methods of measuring oxygen it the brain, we can see it would never have worked. The ‘MS’ brain suffers from a kind of hypoxia that these treatments could never have touched. It takes years, and a few hours in a box can not touch it.

It’s not easy to believe in a new approach to MS. They have been seen before, from doctors, scientists, and kooks, in the media, and in scientific literature.

Zamboni's procedure has been proven and tested. I know, some people, like perhaps our former PM, might argue about the definition of ‘proven’. The ones who have pioneered this treatment are well known to ‘MS’ victims around the world. They are still at it.

“The idea that wheelchair-bound MS patients will suddenly be walking and forever cured is unlikely.”

Our best neurologists have been unable to achieve this for 150 years. Isn’t it time they let somebody else give it a try? Somebody with perhaps fewer media connections and fewer conflicts of interest, and fewer failures, and a track record with CCSVI/’MS’?

It will not take years to determine if this technique is media hype or a medical cure. It is a known fact now. 47 countries are signatory to the fact. Kuwait is offering this treatment to all of its citizens who have ‘MS’. ‘MS’ is the only well-known disease attributed to CCSVI so far. But ‘MS’ is not the only disease it may be a cause of. Just the only one we know about.

The only thing standing in the way of all these people getting treated (and most of them can afford it, even though they have become marginalized) is a few loud-mouthed ‘MS’ ‘specialists’. Not even good science. There is no valid argument against it. I sure wish these doctors could learn to control their embarrassing would-be spokesmen. Is there any statistical connection between the prevalence of ‘MS’ (2x) in women and the shortage of women in the neurology profession? Naaaahh.[/code]

NotSoSick wrote:This article's author is dead on. CCSVI is completely made up, and all the people doing research on it to determine its role in MS are crazy. There is absolutely NO way a problem with veins could cause the problems we see in MS, after all, everyone KNOWS MS is a result of: Well, we don't know, but it's not THIS!

Completely off topic - 1eye are you indeed on a hunger strike?

Only since last night.

Back to the topic now...