Long slow suffering for multiple sclerosis patients as they wait for the results of fake studies.

19 posts / 0 new

Sun, 2013-09-01 22:26

Brian White

You might know that there is a "controversial" new treatment for MS that has yielded fantastic results. The response of the Canadian MS society and Canadian government, medical councils and media has been to use the word "controversial" a lot and stall by studying it to death. Why? Well, MS drugs cost about $40,000 per patient per year. This treatment costs $10,000 in the for profit American system and probably in the region of $4,000 here in Canada if was allowed. Why on earth would a MS society which is supposedly looking out for patient health, and a Canadian governement who is supposedly tight wad and trying to save money be so anti this new treatment? And we need to go back to Military-Industrial Complex Speech, from Dwight D. Eisenhower in 1961. In Canada, we have a medical-pharmaceutical complex that absorbs money in much the same way and it is utterly disinterested in patient health.

Anyway, nobody knows what causes MS. And there is no drug treatment to reverse it. And it has a huge battery of symptoms. They used to use the symptoms to designate people who have the disease but now they go on brain lesions that show up on mri scans. If you have the symptoms and no spots on your scans you are shit out of luck. You get no diagnosis at all! Now to the fake studies. They are studying blood flow and narrowing of veins in ms patients to see if there is a co-relation between adnormalities and ms. First of all, the studies are being done by neurologists and not vascular surgeons. The vascular surgeons (experts in blood flow and adnormalities) are being excluded. Second, the people who ballooned my wifes veins think that narrowed veins has almost nothing to do with why the ballooning succeeds! And they boast a 90% success rate in symptom relief! which is higher than the industrial average. They are saying that the ballooning of the veins actually "wakes up" the vagus nerve and others that runs down beside the veins and "reboots" the autonomic nervous system. They balloon veins based on symptoms that they can fix and based on a heart test under physical stress. And this brings us to an important point of medical research. We don't know how the ballooning works or what it works on, so we should be researching it in a wholy different way. The questions need to be open ended and the researchers need to listen to patients. If the patient is happy with the outcome, that probably means the operation was successful, regardless of whether the researcher understands why or not. So lets check and tweak and go with what works and we can have a better quicker cheaper, more responsive medical system. Here is a video playlist of my wife's treatment. Now I cannot think for a second that this is contraversial, I just know that it works, and it works pretty damn good and every ms patient who has those symptoms should have the treatment immediately if they want it. Why Suffer Needlessly?. http://www.youtube.com/playlist?list=PLkzXlmAwZTZfQ01RnN-8Ip5lUz0HrNWzN

Mon, 2013-09-02 13:54

Sineed

There's this site, run by the Multiple Sclerosis Society of Canada, which looks at CCSVI in a totally objective and compassionate manner:

http://ccsvi.ca/ccsvi.html

Quote:

Research to Date

Research is taking place around the world. Research on CCSVI was presented at various meetings such as the European Committee for Treatment and Research in MS (ECTRIMS) in October, 2010, the International Society for Neurovascular Disease (ISNVD), in March, 2011 (the first conference of its kind, attended by vascular surgeons, interventional radiologists, basic scientists, physicists, neurologist, neurosurgeons, technologists and others), the Society of International Radiology in March 2011, and the American Academy of Neurology in April, 2011.

Vascular surgeons are not "excluded" from research into CCSVI. I see this being asserted by some advocates of CCSVI, and I think it's divisive and not helpful to the cause.

Quote:

In October 2011, the Canadian Medical Association Journal published an article by Dr. Andreas Laupacis which systematically reviewed published studies on the relationship of CCSVI and MS.

The meta-analysis looked at eight high quality studies from around the world.

The primary purpose of the review was to examine the association between venous abnormalities and MS. The secondary purpose was to evaluate the current evidence about the benefits and harms of endovascular treatment for MS.

The review found a strong and statistically significant association between CCSVI and MS as compared to healthy controls. However, poor blinding (steps taken to avoid the bias that could come from the researcher knowing who does or does not have MS) and the inconsistency of the results led the author to conclude that more high quality studies are needed to determine whether CCSVI is more frequent in people with MS as compared to those without MS.

Currently, no randomized trials have been reported of endovascular therapy for MS. Therefore, the authors concluded that the impact of this intervention upon the signs and symptoms of MS cannot be reliably assessed.

So research is continuing, and more is needed to figure out if people who appear to benefit, like your wife, have enjoyed an improvement as a result of the treatment, or because the disorder from which they suffer is by nature relapsing and remitting, and an improvement has occured as part of the natural ebb and flow of the disease.

Like, I think, all Canadians, I know several people with MS, and when CCSVI first emerged, I was hopeful it represented a true advance in MS treatment. But the research so far hasn't found an unequivocal benefit. And sticking things into people's neck veins is dangerous, as the deaths from this treatment have shown.

Quote:

Research indicates that CCSVI does not cause MS.

In April, 2011, Dr. Zivadinov published the largest CCSVI study to date in Neurology. This study reported an increased prevalence of CCSVI in MS, but with a considerably lower prevalence than reported in Dr. Zamboni's work. CCSVI was also found in healthy controls and in those with other neurological conditions. In summary, the degree of prevalence of CCSVI in those with MS indicates that CCSVI does not cause MS.

There are potential complications associated with CCSVI-related procedures.

As with any invasive procedure, there is risk. There is general agreement that balloon angioplasty has less risk than the treatment of CCSVI involving stents. Please read our Risks and Safety section for more detailed information.

Individuals who have obtained CCSVI-related procedures are self-reporting quality of life benefits (e.g., less fatigue, warmer limbs, better balance). These self-reported benefits are often of limited duration.

Read stories from people who have gone for CCSVI-related procedures here.

Mon, 2013-09-02 17:26

Timebandit Timebandit's picture

Hi, Brian --

I made a documentary on Liberation therapy for Nature of Things a couple of years ago. So I'm very familiar with the issues, and also with many of the researchers (for example, we interviewed Dr Zamboni himself). We also traveled to Costa Rica to follow Canadians who were treated with that therapy there because it was not available in Canada.

First of all, the benefit rate has never been 90%, except for very early on with Zamboni and Salvi's very small early sample. Early on, the observed rate of benefit was 1/3 felt distinct improvement, 1/3 felt moderate difference and 1/3 felt no improvement at all.

Zivadinov has done a lot of work on this, but UBC has been doing multidisciplinary imaging studies and are now embarking on direct, double-blind trials. They know that narrowed veins are not the cause - 70% of MS diagnosees have them, the same occurence as people who have no symptoms or family history of MS. The best that can be hoped for is that there is some benefit in reduction of symptoms, and to understand if there is some significant duration of that. It's going to take some time for this to accomplish - MS is devilishly difficult to study in terms of placebo/non-placebo because of its relapse and remission being so difficult to predict and understand.

I'm glad your wife is doing well, and I hope that her symptoms stay at bay for a good long while. We are doing an update on the program because new research is about to be released, and will be following up with our contributors who've undergone treatment as well. I'm hoping they continue to do well, too - they are wonderful people and they allowed us access to a very emotional experience.

Mon, 2013-09-02 20:20

Sineed

If I had a family member with MS, I would advise against liberation therapy on the basis of the information gathered thus far.

Mon, 2013-09-02 21:29

Timebandit Timebandit's picture

I'm interested to see how our contributors have fared since the procedure. If they're not experiencing ongoing benefit, I'm also interested to know if they still think it was worth going for.

Mon, 2013-09-02 22:27

Sineed

Timebandit wrote:

I'm interested to see how our contributors have fared since the procedure. If they're not experiencing ongoing benefit, I'm also interested to know if they still think it was worth going for.

That would be a worthwhile documentary....

Mon, 2013-09-02 22:47

Timebandit Timebandit's picture

We'll be revamping the tail end of the existing doc - they want to air it again, but there've been new developments.

Mon, 2013-09-02 23:26

Goggles Pissano

I like to congratulate you on your happy success. I hope you continue to have many more successes in the future.

Tue, 2013-09-03 01:39

Brian White

Thanks Goggles, Did ANY of the rest of you watch the videos? Did ANY of you read the discriptions? My wife does not have MS and she was not treated for CCSVI and she did not have it. Her veins were fine. She had balloon angioplasty to reboot her the autonomic nervous system. And I don't know how brain dead people are here but to me, there was massive real gigantic improvement. As per before and after videos. I have lots more before videos that I did not bother put up. If you cannot see the improvement in the videos, I suggest you get your eyes and mind tested for the placebo effect and have a very big long enema. She can do heal to toe better than me now. 2 weeks ago it made her sick. Now.bladder control, don't dare give me that patronising bullshit about people able to turn that on and off like a tap. You either have it or you wet yourself. Frankly this procedure and its results have been the freakiest thing I have ever seen in my whole life, but I am so glad of it. "There's this site, run by the Multiple Sclerosis Society of Canada, which looks at CCSVI in a totally objective and compassionate manner:" REALLY!!!!!!!!!! I thought they were astro turf for the drug pusher industry. Objective?????? Well, then where is Jeff Beal or Montel Williams or Bill Code or Gianfranco Campalani? Pretty famous people who all had balloon treatment for their ms and all had improvements. And one of them is a flipping heart surgeon. They never mentioned a single one of them. I was told that the head of the MS society gets more money than Harper. The MS society of Canada are a bunch of liars who refer patients to the drug companies as guinea pigs for drug trials and gave millions to neurologists to do the work of interventional radiologists. Well, guess what, they are not qualified to do interventional radiology. So of course, they would mess it up even if they were TRYING to succeed. Now, about Dr Arata and his 90%. It is real simple, he only takes MS, lymes, cronic fatigue and "other" who have the autonomic disfunctions. So if you have no bladder and bowel control, he can fix it. If you cannot do heal to toe, he can fix it. If your ballance is shitty, he can fix it. If you have hot and cold intollerance, he can fix it. He says he cannot fix neuralga but "her perception of it may change". So once again, for those who cannot read and who cannot see past Zamboni, he is ballooning veins specifically to "wake up the Vagus nerve". Look up vagus nerve stimulation and just pretend for a few seconds that you do not know everything about this disease. Dr Arata's nurse told us that the after procedure check ups brought her so much joy. Why? because people like me and my wife were so damn giddy happy. If that is a placebo, then why are the drug companies not selling it? Cheap at $10,000 a pop. Now another thing. What the hell is this about science based medicine? The thing that all these crazy researchers are forgetting is that there is another part to that. It is called "evidence based science". Arata tried out Zambonis theory, he does pre and post op and follow ups for months afterwards and tried different balloon sizes and then he discovered that only the autonomic functions were being fixed. Then he found people with all those autonomic symptoms and good veins so he ballooned anyway. Same result, the ballooning fixed the problem. I find the whole research the thing to death thing disgusting. If the canadian medical system had half the common sense and 1/4 the research sense that Arata has, you would be well on the way to finding out what causes MS. Remember , he has only treated 1200 or 1300 people. Canada does not even know how many canadians have gone elsewhere for this treatment, but it is probably in the 10,000 to 20,000 people range. If anyone with any brains followed up with those people, you would learn a hell of a lot. And, finally, no, I did not spend approximately 15 thousand dollars just to fake some videos. Here is the simple reason people go for the procedure. MS hurts like hell, and the symptoms hurt like hell and this relieves the symptoms. If anybody talked to the patients, they would figure that out. But God forbid, a nurologist miss his morning and evening golf by actually engaging in conversation with a sick subject. No, that would reduce his dollars per hour. My wife was starting to lose feeling in the left side just last week. And 4 and a half years after the "stroke" they still could not say exactly what was wrong with her. I bring her to the states and overnight she is a million times better. Yes, I know that is an "anacdote" but so was what Galaleo saw from his telescope until someone else followed up. You guys are too lazy to watch the video and too self involved with your own arrogance to put yourself in her shoes. If any of you did, I bet half of you would have ended it all by year two. You have NO IDEA how much suffering your arrogance puts people through and I doubt if you would care anyway. Introducing the placebo concept into surgery is fucking stupid. Try to imagine it with appendicitis. They know that it complicates thing to the nth degree and that is the whole point. If Arata is right, ALL the CCSVI studies are chasing the wrong horse! Think of it, every study checking the wrong thing! What a bunch of stupids. If Canada had evidence based science, they would have thought of that and be right now testing at least 4 competing theories.

Tue, 2013-09-03 02:19

#10

Brian White

I see on a ccsvi site that a doctor in Ontario gave his expert opinion about it being unlikely that reflux exists. But how do the valves in veins actuate? arn't they activated by the blood flowing backwards? (isn't blood flowing backwards reflux?). And if reflux did not exist, why would veins even have valves? I cannot understand why we grovel at the alter of the "expert" in Canada. One faulty valve in the neck and you will be having effects 20 and 30 cm back from the valve. I know because I modeled a faulty valve as part of one of my experiments. So, now, if you can do the imagining stuff, (that all good scientists can do) Imagine the hormonics of a faulty valve in the neck and a tiny pulse or pressure wave back from the valve at EVERY heart beat. So every second or so, you get this little pulse, what happens to it? Well, it is going through blood vessels of different sizes and as with any other pulse its energy will dissipate as it travels back and there will be a pattern to the dissipation. If someone has a very even heart beat that does not vary (Like those that have autonomic disfunction) the dissipation pattern will always be the same. Those places with low blood flow due to the harmonics pattern will always have low blood flow and those places where the pulse comes in through 2 vessels and intensifies will always have that intensification. It is pretty easy now to make a leap to breaching the blood brain barrier now, isn't it? Is anyone even looking for bad valves in the neck veins of people with MS? Any fluid flow experts involved in the modeling of the harmonics of good and faulty valves? Human blood pressure varies from 1.5 to 2.3 psi with the heart beats. You have a difference of 0.8 psi every second. That is ample to cause weird harmonic effects if people have a damaged valve and a very even heart beat. Ask the pipe systems guys but don't ask a neurologist. He will not have a clue what you are talking about.

Sat, 2013-09-07 00:24

#11

Brian White

http://www.cbc.ca/news/health/story/2010/05/05/ms-ccsvi-bc-ont.html wish I had known this 3 years ago! Would have saved Jade 3 years of suffering and they could have done it in the very hospital where she spent about 5 weeks with other ward occupants dieing! Kind of strange and scary hearing "would you like to pronounce?" while on a hospital visit (senior doctor to intern). Found an amazing doctor in Austria who has his free book about ms research through the ages at http://www.ms-info.net/evo/msmanu/984.htm Guess what! They have known that there mechanical tearing of tissue in the MS lesions for DECADES! And what could possibly do this? Brain worms? Nope, none were found. Reflux of blood from faulty valves rushing through the veins and bursting them? Quite the possibility. Or maybe it is just a tiny pulse of energy back from a valve (the closed vein valve looks like a a loudspeaker as it flexes as it slams shut) And what else can cause mechanical damage in the brain, anyway? Don't know too many ms people who are head bangers too. Any neurologist like to explain mechanical damage in the "Dawsons fingers". One thing about evidence based science. If you cannot explain the evidence, you throw out the theory.

Sun, 2013-09-08 21:11

#12

lookielou

I have no dog in this race, but I find the coverage irritating. A study released by McMaster University a couple of months ago "proved" that in theory the Zamboni treatment shouldn't work, but competely ignored the fact that it does work quite dramatically for some people. As timebandit says, about one to two thirds. That's not bad for something that's relatively cheap and safe. And a vast improvement over the highly expensive drugs that do little if nothing.

The pace of medical research is so slow these days it's aggravating. Many major developments in the past were pretty much accidental, from penicillin to lithium. Now you get everybody from medical ethicists to oversight bodies to funding agencies to the SPCA all sticking their oars in, looking for prior proof that an experiment is worth trying. From what Brian says, it sounds like Zamboni was a classic case of old-fashioned progress: he had a theory that turned out to be wrong, but the treatment worked. Hallelujah!

A bit of history: In the summer of 1921, Banting badgered a university professor into letting him use the guy's lab while he was on vacation. He isolated what later became known as insulin and by the following January (i.e., six months later!!) was saving the life of his first patient. These days he'd be so bogged down in paperwork it would be years before he was even able to contemplate preliminary animal testing.

Sun, 2013-09-08 21:38

#13

lookielou

Sineed wrote:

If I had a family member with MS, I would advise against liberation therapy on the basis of the information gathered thus far.

And if you had it yourself?

Mon, 2013-09-09 03:15

#14

Brian White

We just saved a poor american soul from the MS torture chamber! She gave Jade and I a thankyou because we helped her make her decision. Her name is jennifer and she is "excited" due to her big improvement. In our case, we extend a special thankyou to Lori Batchelor and to Denise Baillie in Canada, for their great videos and advice: Denice ("do it quick as you can!" "You would be nuts not to!") Dr Bill code, just up the road in Duncan BC, Joan Beal in the USA and Kerri Cassidy in Australia. Each of those people (except Joan) HAD the treatment so they are speaking from personal experience. I would also like to give the Mengele medal to the President of the Canadian MS society. Yes indeed, Yves Savoie, you are great at selling drugs, I recommend you try Tysabri on yourself for 3 years. http://mssociety.ca/en/community/mssc/president.htm So, Yves, why did many of your volunteers resign from the MS society and get the vein treatment? Why did you say in an interview with Anne Kingston that a drug treatment for neck vein theraphy would be acceptable while this surgery is not. I cannot find Kingstons interview but I can find an interview she gave to an English group where she talked about Yves surprising statment. Yves president page looks like a pharmacutical sales pitch page to me. Is the MS society just an astroturf organization? A shop front? a fake? As far as I am concerned they are a bunch of liars who took over the organization and are using it to rake in money. I heard that Yves makes more than Stephen Harper. Wonder if he is president for life? Or what his next job will be? Yves goes running to the press every time something ambivilant like the Buffallo study comes out. "You See!, CCSVI BAD!" But he never mentions Jeff Beal, and his massive improvement or Montel Williams and his or Dr. Franz Schelling whose book is a real eye opener. http://www.ms-info.net/evo/msmanu/984 Schelling proposed a venous cause for MS in the 1980's because lesions have higlly localized "mechanical damage" to the tissues right inside the lesions! Nobody could figure out what cause this damage but rushing blood could do it. I think my neck vein valve as a loud speaker theory could do it but I know too little about fluid mechanics to prove it. The valve emits a pulse, and the vein in the lesion resonates with the pulser and presto, "localized mechanical damage". Like an opera singer's voice cracking a wine glass or making a tuning fork hum at a distance! And Dr Schelling agreed that it is worth looking into it. (I emailed him 2 days ago). If we can show that the lesions are a symptom and not a cause, then the search can begin for the real cause of MS. The lesions are definitely NOT causing bowel and bladder problems, brain fog, ballance problems, MS walk, blurry vision because Dr Arata turned all those symptoms off like you would shut off a tap, by operating on Jades Neck veins. Besides, Jade does not have MS, and Jennifer (who does) got pretty much the exact same symptom relief that Jade got. I highly doubt that Dr Arata wiped out Jennifers lesions by operating on her neck! Brian

Mon, 2013-09-09 04:39

#15

Sineed

lookielou wrote:

Sineed wrote:

If I had a family member with MS, I would advise against liberation therapy on the basis of the information gathered thus far.

And if you had it yourself?

Same.

Mon, 2013-09-09 09:47

#16

lookielou

Sineed wrote:

lookielou wrote:

Sineed wrote:

If I had a family member with MS, I would advise against liberation therapy on the basis of the information gathered thus far.

And if you had it yourself?

Same.

Well, that's one person that might listen to you.

Tue, 2013-09-10 03:02

#17

Brian White

Sineed, in science we take measurements before an experiment, then we do the experiment (the balloon angioplasty) and then we take measurments again. And we note the differences. In my videos of my wife, she did neurological tests, and she did the standard heel to toe walk. I ask you to look at those videos and tell me what you see. Can you detect a difference between the before and the after? Having talked to people who value their position in a science as deity cult, I am pretty sure you too will refuse to look at the videos and if you do, I bet you will not give an opinion. Not sure why people do that, perhaps they feel it openly betrays the gang? Some people have called these videos "anacdotes" to take absurdism to a whole new level but actually they really are videos of neurological tests. When you go to the dentist and say "my tooth hurts", the last thing you would expect is for them to say "that is an anacdote, I will NOT look in your mouth". It is like Roberts rules on steroids. Really this "anacdote" stuff is blatent elitism. You will not listen to a common person but a professor who told you what to think, can do no wrong. Anyway, for those of your who value real science instead of the placebo study it to death type "research" , the video playlist is at http://www.youtube.com/playlist?list=PLkzXlmAwZTZfQ01RnN-8Ip5lUz0HrNWzN The entire thing takes 15 minutes to watch. So yeah, I am playing a game, whether you respond or not, you are playing a game too. What will you do? I invite other people to watch the video and give their comments as part of this "social decency" experiment. Thanks and have a GREAT evening and I hope we are not related. Brian.

Sat, 2013-09-14 13:30

#18

Brian White

Multiple Sclerosis news! Since I made the little closing vein valve acting like a radio transmitter theory and sending a pulse of energy back against the flow of blood, evidence has been lining up to support the theory! Also, another guy has suggested "water hammer" in the pipework of the brain, as a possibility. I have posted about this in the engineering forum CR4 amd got some great feedback. Joan Beal told me about F.A. Schelling and his book and I got to reading the specifics this morning. . I have a theory that a neck vein valve may be acting like a radio boom box and transmitting a tiny pulse of energy back into the brain cavity and this causes the lesions when the pulse of energy reaches a vein that it resonates with. It shakes it apart! When I posted this idea and an Australian engineer said that something like water hammer could be happening in the brain. Another has posted a suggestion too. Here is a part of Sdhellings book that supports both those theories. (Neither of which have ever been tested by the way!). When you read it, you might find it consistent with the "waterhammer theory" or my "Vein valve as transmitter of waves" theory or the suggestion that in some capillaries may have no flow and low oxygen levels? One key piece is that the pattern of lesions spreads counter to the flow of blood through the veins. http://www.ms-info.net/evo/msmanu/956.htm#level_5_1 The specific piece is lower in that chapter and it is headlined with:

Forces Behind Cerebral Plaque Expansion

Five features characterizing the spread of the specific brain lesions of multiple sclerosis prove useful for determining injurious impacts which cause the damages:

The common asymmetries of the plaque expansions away from their veins, especially in their bizarre extremes.
The plaques' emergence exclusively from certain segments or even sectors of the walls of their veins.
The consistent countercurrent spread of damage, i.e. its progression, without exception, in a direction diametrically opposite to the normal venous (and interstitial fluid) flow.

Tue, 2014-08-05 16:07

#19

Brian White

Hi, thought I would pop back for a while. Jade is gradually declining again but she is still way healthier than last year. She got the angioplasty in late August 2013. Dawn Skinner got angioplasty about 4 years ago and she is "having the time of my life". Due that her non diagnosis, we are still way better off health wise than prior to the operation. She has good ballance still so no more dangerous falls and fatigue is greatly improved. Pain is mightily reduced. I no longer wake up with a wife crying in her sleep beside me. She is suffering in the hot weather. Was it worth $10,000 plus travel expenses? Yes of course. Even though I just scrape by at the best of times. I am sure some people here will pat themselves on the back because some symptoms are coming back but that is the way of the world. Susan Keller was treated in 2010 and prior to that she had MS for 9 years. Just said on one of the facebook groups that her symptoms have still stayed away. Thats about 4 years. (It is a secret group for former and new patients of Dr Arata) who did our procedure and it has over 600 members. The group lead had to make it secret becaue of nasty people on the outside who joined just to make trouble. A lot of people had success with angioplasty down in California. A quarter of his patients in a "fan club" is testimony. Another thing to note is that autonomic dysfunction (that dr arata treats) is also common in lyme disease (and its co infections of which there is usually at least one). Dr Arata's procecdure is called trans vascular autonomic modulation TVAM (he is doubtful that CCSVI exists) and it is primarly aimed at reactivating nerves within the vein (that measure vein stretch) and in the vagus nerve that runs beside the vein. Lots of Canadians have a "dual diagnosis" MS first and then Lyme. But actually that means that MS was a mistaken diagnosis. Lyme is a real disease with a real known cause. The Lyme test in use in Canada is slightly more accurate than a coin toss so it might well be that many more "MS" cases are actually Lyme. Brian