The Wall Street Journal Does CCSVI

I don’ t see how a non-MS reader would think MS patients are deranged after reading the WSJ article, likely realizing the CCSVI hypothesis had the backing of one researcher. They may think Dr. Zamboni has some explaining to do, appearing to unable to accept contradictory evidence.

I did read some stuff about this study. It was done in 2008 first off and I believe that CCSVI research has came a long way in 2 years. I also read that it was done at a different angle than the “transverse” plain that Zamboni used with his findings. Also the doctors are known to have these ties;

“The study by Doepp and colleagues was funded by the German Research Foundation. ”
“One author reported speaking fees from Sanofi-aventis, Novartis, and Merck Serono. ”
“O’Looney reported no potential conflicts. Fox has had relationships with Biogen Idec, Teva, and Genentech.”
http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=2944

I personally had the procedure . I crossed 23 symptoms off my list. I only have some minor aches and pains. The painful knots that consumed my muscles is now gone. I think people’s quality of life is at stake and I don’t see how people could keep this from anyone. I didn’t have an ultrasound at all. I just had a venogram and the doctor told me that where my stenosis was in my chest and my lower right jugular couldn’t be seen with ultrasound. I could of been denied if I relied only on the ultrasound.

I believe the article mentioned in the WSJ and the article in The LA Times are part of a concerted effort to slow down the people advocating treatment for CCSVI. The articles which have been picked up in Toronto papers too seem to be the work of a PR firm. I am so happy you have taken a skeptical view on them. The German and Swedish studies mentioned are highly questionable also.

The German and Swedish studies are not only flawed but are, combined, smaller than Zamboni’s pilot study.
The case that MS is an autoimmune disease grabbed a tight hold on MS research only after Polio was cured with a vaccine thus pushing the direction of research toward pharmaceuticals. A big breakthrough was thought to have occured when researchers were able to create a mouse with “fake MS”. They treated these mice with a miriade of drugs and years later discovered a slight improvement in a small percentage of MS patients taking immunosuppressant drugs. These drugs were hailed as miraculpous but the truth is they did very little to help and caused innumerable MS patients to suffer their horrible side effects.
Dr Zamboni reinvigorated the research of a venous connection to MS and with todays modern imaging techniques was able to detect a phenomenon which has truly shown miraculous promise.
There have been many more angioplasty procedures done than this WSJ alludes to. MS patients are showing their eagerness to educate themselves and seek treatment from knowlegeable and experienced doctors. Hundreds if not thousands of procedres have been performed. The results are amazing. The science will come but in the mean time, MS patients will seek their own help.

Scientists are no better at interpretation than anyone else. They are particularly poor at drawing cause-and-effect conclusions.

Even if one were to accept the two studies at face value, it would be a legitimate and testable conclusion that as with Type II Diabetes and obesity and inverted sexual orientation, some people for an unknown reason are simply more susceptible to risk factors than others. That is, blood flow needs to be seen in a relative rather than absolute manner.

Julie,

To me, the article seems a more than “a little biased against the theory” by virtue of what it omits: the two studies mentioned did NOT follow Zamboni’s protocol for the ultrasound screening. It would have been nice if they had compared apples to, well, apples.

I wonder: did the WSJ know that the Departments of Radiology and Neurology at SUNY Downstate Medical Center held a symposium on the proposed endovascular treatment (as opposed to the oft-misapplied moniker “surgery”) of CCSVI last Monday, July 26, 2010?

Speakers from the United States, Bulgaria, Italy and Kuwait presented a thorough review of CCSVI, including the proposed relationship between CCSVI and MS.

Has anyone read any news articles by any reporters who covered the event? Oh, well, maybe it really wasn’t all that newsworthy.

Hah.

On the surface, Zamboni’s hypothesis can align perfectly with extant immune system explanations:

Anecdotally: The brain bathes in its own waste due to “clogged drains” and the immune system kicks into overdrive to try and clean house.

It also could explain the baffling variability of symptoms as MS seems to randomly attack different portions of the brain in different patients…Different drainage malfunctions would tend to localize the damage.

Consider: Why is most of the damage to MS patients focused on the brain and spinal cord?? Why isn’t myelin being eaten away in fingertips or earlobes?? Myelin exists throughout the body (and brain for that matter)…Why have researchers failed to explain for more than 6 decades why MS LEAVES SOME MYELIN ALONE. Voila: I offer you…Zamboni.

hi from Canada
I have a very solid medical background, I also have MS.
In recent memory I haven’t been histrionic or unstable (maybe P.O’D) I am a deeply intelligent and intensely focused individual.
I am however, dismayed by the rhetoric being spewed by questionable sources (look at who has a “vested” interest in the studies).Always look at the funding sources of these reports!! (Swedish and German)!! Paolo Zamboni doesn’t have to defend weightless, brainless, garbage studies attempting pathetically to take him down. He holds his head up and continues to make a profound scientific difference.
Bravo, Dr.Z, Bravo!!

As anyone even vaguely familiar with how the pharmaceutical industry works will attest, as soon as Dr Zamboni’s work was publicised the pharmas began brainstorming over how they could discredit his work. As Ruth-Ann suggests, who is funding these studies?

As a first step to determining the objectivity of these studies, why doesn’t the WSJ or NY Times look into who is funding these studies?

Now that would be some real journalism.

Moreover, CCSVI is supposed to be a VASCULAR condition so why is the WSJ speaking to a NEUROLOGIST instead of a VASCULAR SURGEON?

Pharmas don’t want cures for non-lethal diseases, that would be killing their cash cow. It’s entirely in their interests to have people needing to remain on LONG TERM DRUGS FOR THE REMAINDER OF THEIR LIVES.

Hardly a conspiracy theory, just sound commercial reasoning.

Um, maybe I’m just incredibly jaded and of a negative mindset, but…

It’s the WSJ folks. The Pharma/Healthcare/Medical industries (yep, they are still for-profit, monopoly-exempt after the ridiculous “Obamacare” rhetoric kids) regularly PAY for reporters to run stories they plant/write (kind of like how laws are planted/written in Congress by their respective lobbyists.) This is true for every industry represented in the publicly-traded world of Wall Street. If the WSJ article tone was suspect, um…duh! Just sayin.

I believe that several people have it right. A medical article in the WSJ only points to one conclusion. Some greedy person is trying to keep us all on very expensive medicines they make. I also found this article repeated in the LA Times. Both articles were re pleat with unsubstantiated statements and a total lack of critical think by the reporter. And do neurologist have a vested interest in our continued business from not being cured! Another perfect example of how bad newspaper reporting has become.

alot of what has been mentioned does NOT nake sense.There is lots of living proof CCSVI does work on you tube with real life multiple sclerosis patients.Many will NOT entertain us to have CCSVI because its a money making disease for drugs ect.CCSVI is a way forward instead of standing still,it should be more listened to and realised what benefits happen.its changes life for better.Any new operation for any disease is always backed away from for ages untill its hits home it can help.Its sheer crazy to leave people with MS and NOT help them.Medical neglect without a shadow of a doubt.

It is sad that stories like this are given such prominence.

First, both are small studies and the attention they are getting is all out of proportion to the size of the population studied.

Second, neither follows the Zamboni protocol so they have no value in judging the merit of Dr. Zamboni’s conclusions.

It is sad that major newspapers such as the Wall Street Journal and LA Times do not have reporters with sufficient understanding of the scientific process to note these major flaws in these studies and appropriately characterize them as worthless in terms of evaluating the phenomena that Dr. Zamboni seems to have uncovered. Very sad.

The results of MRV and ultrasound studies have been all over the place, most likely due to variations in equipt/methods/experience.

The only accurate study must involve administering a catheter venography to explore the jugular and azygos veins, and, if indicated, performing angioplasty.

As experienced by Dr. Sclafani, while none of his patients indicated strenosis when checked by ultrasound, 100% of them did actually have it when he performed catheter venography.

The only study which will count is the one that tracks patients that have had the procedure. There would be no shortage of volunteers so why is it that this has not been done?

It’s a pathetic situation.

I have read the The German study and one of the doctor’s involved is a paid talking head for Big Pharma.

To quote the article… “K.S. has received speaking honoraria from Sanofi-Aventis, Novartis, and Merck-Serono.”

I question the bias of this study.

http://www3.interscience.wiley.com/journal/123513536/abstract

Why is the “Annals of Neurology” publishing a weak investigation of primarily vascular findings….because of a connection to nerve damage?

Reviewing Dawn’s link to the abstract above: The scientists involved were all very heavily weighted to neurology. Not a single expert in vascular disciplines among them.

I question the bias of the study as well. Doesn’t smell right at all.

There appears to be is no logical reason at all to stall with CCSVI with the angioplasty portion.

From all research this procedure – angioplasty – is frequently (expertly)used for all kinds of other conditions (diabetes, heart conditions, etc.) and is extremely safe.

Stents are another story – they haven’t been extensively tested for this area of anatomy.
– -However, there is no reason why one couldn’t hold trials without stents.

What is the reasoning behind not testing for compromized veins first and if present – angioplasty second all in one research? If present -then following up with the angioplasties for the blocked veins. Simultaneously do all gathering of statistical research – numbers with MS with this venous condition/those without and then gathering results of treatment on those that required it.

That would be both compassionate, and cost effective as angioplasty is a “safe” treatment compared to most other treatments that have been tested. At the same time – long suffering MS patients have an opportunity for a return of health, or at worse, no change.

This is a much less radical treatment – than the danger there was present when Tysabri was tested. To date there are some people who can never take Tysabri.

However there are very many people who cannot withstand the usual C.R.A.B. treatments (copaxone, rebif, avonex, betaseron, etc) nor Tysabri.

For those of us that cannot tolerate these “MS attack reducers – not eliminators”, we have absolutely no protection from this debilitating and degenerative disease.

MS statistics gathered seem to have some evidenced links to people experiencing viruses, like Epstein-Barr disease, early in life with a developing immune system, which altered the immune system. There are a percentage of some people that additionally had developed abnormal reactions to viruses – Henoch Schonlein Purpura, etc.

(Interestingly enough this is a vascular allergic reaction to a virus – again reinforcing the potential of vascular-issue-link to MS). Most doctors have agreed that the immune system reaction is dysfuctional for MS patients – in that it is abnormal to attack myelin.

Because of conditions like these – taking immune modifying treatments like Copaxone, Rebif, et al, for people who have experienced this purpura, and other similar such conditions – can cause serious immune damage where patients can develop idiopathic and potentially dangerous allergic reactions.

This is just another reason why stalling should stop and the gates for immediate CCSVI testing should open.

There already have been many trials for Stem Cell Transplants for MS and this is a far more risky procedure.

Tysabri has a more significant mortality rate than CCSVI and yet trials went through for it. To date there are people who cannot/should not take Tysabri.

I really do not understand the lack of logic present with the stalling of testing this comparable safe procedure.

Additionally I don’t know why a Wall Street Journal should have any medical opinion at all and even less experience with MS.

I do know however that billions of dollars of sales in C.R.A.B. medicines and Tysabri are made annually in Canada. Even higher billions in USA.

No wonder there are a lot of very angry people with MS that are launching lawsuits.

Even hallowed assocations for MS get 1-5% of the sales dollars of these drugs to spend towards research.

Is it any wonder we are going nowhere fast with the relatively safe treatment which at worse will do nothing and at best save and transform people’s lives.
After all, isn’t all just about the money.

There are many frustrated medical doctors that DO support trials for CCSVI and think that the current mind-think is bordering on a violation of the Hippocratic oath.

Wall Street simply should butt out and stick with what they are good with – stocks, bonds, marketing, investments, ventures.

Obviously they must think there can’t be much money made in this area. (Too inexpensive and can’t exploit for profit).

I read that one of the new fangled MS drugs has a side effect of basal cell carcinoma. What!?!?!?! I like my MS just the way it is, thank you very much. If I have to exchange it for skin cancer, I think not.

Of course, the pharmas are trying to discredit Zamboni…they want to give me skin cancer instead!

Why do we even waste our time critiquing a medical article in a non-medical journalist vehicle? The WSJ, as with any newspaper, (yes it’s just a newspaper) can print whatever they feel will sell their paper. Their articles are their opinions, which are slanted, to present their perspective as opposed to some other newspaper’s slanted opinion. If you want to make an educated opinion on any research, first of all check the funding for the research. I used to work sales for a large pharmaceutical company, and all printed research printed are the research projects that support theier products. If the research they fund does not support their product line, they don’t publish the research results. And second, get any medical information from medical sources, not newspapers!

I’ve been treated for CCSVI. Everyone of my symptoms disappeared. Not long after, I restenosed and every symptom came back with a vengeance. Why aren’t we seeing this in the media? I suggest you read this article.
http://www.naturalnews.com/011401_Dr_David_Graham_the_FDA.html
This is why we don’t see CCSVI in the forefront of the public eye.

I have read both the papers Julie. The Annals of Neurology article was shameful. They did not verify or compare anything.

http://www.facebook.com/notes.php?id=114648478563437#!/note.php?note_id=121466897900790

This is just my thinking, I dont speak for anyone but myself here. Near as I can tell the current medical establishment is embarrased. After decades and billions of dollars worth of research along comes this guy who finds something new after 5 years. his real motivation; his wife. and wanting to ease her MS suffering. all the while this guy has neuro issues of his own.
He not only finds a new direction but an affordable one. the last estimate i heard was that MS folks could expect to spend upwards of 2.5 million bucks for medical care over the remainder of their lives.Should this prove to be as effective and conclusive as some are touting it to be,that could be cut so drasticly that it wont even be funny.I know we’ve all heard the ‘big pharma’ conspiracy talk before, but there really is just way too much money at stake to not think there has to be at least a little something to it.The truely deranged people are the ones who dont understand the excitement of just the possiblity that this could be an answer. As such, i wouldnt expect the current medical establishment to welcome the CCSVI theories with open arms.

The pressrelease about the Swedish study is spreading wrong info about two deaths in the Italian studies.

Or have I missed something?

Look here

http://www.alphagalileo.org/ViewItem.aspx?ItemId=82487&CultureCode=en

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