'Scientific quackery': UBC study (regarding CCSVI)

[vesta]

Greetings:

Ample evidence points to MS (and other neurological disorders) being a disorder of the fluid (blood, cerebrospinal fluid) circulation through the CNS. This current study shows that they don't understand the phenomena. It's easy to debunk a theory when it has been misdefined.

"So consider the factors. Is blood flow from the brain impeded by a venous obstruction? Or does a dysregulated autonomic nervous system cause the smooth muscles of the vein to go into spasm, thus sending refluxed blood into the CNS? Will simple body tension cause the veins to seize up and impede blood flow, tension caused by emotional stress, the flu, toxins, poor food? Has stress re-activated a dormant EBV Herpes virus lodged in the autonomic nervous system causing the veins to seize up in spasm? Is there a bone pressing on the otherwise healthy vein? Does cerebro-spinal fluid flow obstruction damage the axons, the spinal cord? Where is the principle obstruction to the free flow of central nervous system fluids? How should it be treated?"

Quote taken from my site MS CureEnigmas.net

Best regards, Vesta

upright

I am re-posting the above comment to re-iterate my opinion that the study was badly done. Were those questions asked before thay launched their study? Apparently Dr. Traboulsee (who looks so pleased with himself in the article's photo) refused Dr. Sclafani's experienced advice in setting up the protocol which Dr. S would certainly not consider conforming to a "Gold Standard" procedure.

CCSVI is only ONE manifestation of MS pathology. It will be understood eventually that MS lesions are caused by disrupted central nervous system fluid flows (venous blood, cerebro-spinal fluid) which agress the brain and spinal cord leading to inflammation /lesions. However, the origins of this disruption vary (see above quote). In consequence the treatments should vary. Angioplasty is one.

Dr. Owiesy's idea that malfunction of the autonomic nervous system triggers muscle spasms in the smooth muscles of the veins to obstruct blood circulation conforms to my experience. A simple massage will release the spasm to get the blood to flow for me.

People like to sneer at the various remedies MSers find to help themselves that don't work for everyone. Why should they? Consider that a remedy that relaxes one MSer may suffice to prevent the autonomic nerve spasm in him/her. But it won't work for everyone. Dr Owiesy proposes administration of a medication in the area surrounding the IJV.

Scott1 on this site proposes a bio-chemical solution (diet, suppléments) to regulate the "autonomic immune system in nerve conduction" (sympathetic and parasympathetic system message to smooth muscles). He can explain it better than me. At the moment my computer won't copy anything so I can't refer directly to his writings. He is Andrew who has written an excellent 3 part series on MSTranslate.)

There will NEVER be a single cure for MS because the origins of the CNS fluid obstructions are varied - hence the "cures". (Already the fact that the 10-15% PPMS which don't conform to current "auto-immune" model should cast doubt on it.)

Dr. Zamboni opened the door to an avenue of MS research/treatment which has just begun to bear fruit. Unfortunately Neurology Luddites are impeding this research and worse, treatment. "Quakery" is a loaded word, comments like "definitive debunking", "final death blow" Dr Rasminsky "Anybody who knew anything about MS knew the idea was nonsense from get go."

They discredit themselves and their profession.

Regards, Vesta

[Cece]

CCSVI is only ONE manifestation of MS pathology. It will be understood eventually that MS lesions are caused by disrupted central nervous system fluid flows (venous blood, cerebro-spinal fluid) which agress the brain and spinal cord leading to inflammation /lesions. However, the origins of this disruption vary (see above quote). In consequence the treatments should vary. Angioplasty is one.

What you say here -- that there is inflammation and immune system involvement as a result of the disrupted flow -- seems to me to clearly answer why someone would stay on DMDs if for any reason their blockages are unable to be treated.

It seems reasonable to consider CCSVI blockages as a contributing factor, much as cigarette smoking is a contributing factor to lung cancer. If you stop smoking once you're diagnosed with cancer, you've still got cancer. You should still stop smoking and you should also treat the cancer.

If my experience with other MS patients has taught me anything, it's that people are exploring every possible avenue against this disease. Diet, DMDs, exercise, glucose, fasting, chemo, stem cells, CCSVI, etc, etc. They should all be explored, but CCSVI most of all, in my opinion.

[vesta]

Thank you Cece for the comment. I quite agree CCSVI should be given priority. I serious study would begin with data from an angioplasty CCSVI registry which the FDA forced the Hubbard Foundation to abandon. Statistical analysis of MS type, age of onset, age, gender, any and all physical conditions coupled with angioplasty outcomes etc (I don't begin to know what factors count, that's for the CCSVI experts to know.) With that in hand one can have an idea of what works for whom. To ignore the success stories such as Jeff Beal and Mark Miller and yourself? is so irresponsible. And to suppress a registry of angioplasty outcomes well nigh criminal. I Wonder if the Italian clinic is keeping such a registry. Dr. Sclafani? I translated my main site entry on a French MS site and a member wrote that 2 years ago her husband had had the good fortune to be treated by Dr Sclafani and afterwards his French neurologist found the results simply "miraculous". Dr. Sclafani warned her husband to avoid carrying something which would pull the weight down, and sure enough, 4 months later her husband's veins re-stenosed. It seems to me that if IRs were free to develop stents, these setbacks could be avoided. Anyway, the struggle here isn't really scientific, it's political, a question of power, vested interests. Do you know of anyone maintaining a detailed CCSVI angioplasty registry?
Best, Vesta

[NHE]

To ignore the success stories such as Jeff Beal and Mark Miller and yourself? is so irresponsible.

Don't forget Tiltawhirl.

http://www.thisisms.com/forum/chronic-c ... ml#p199800

[centenarian100]

Centenarian100 suggests that Dr. Zamboni has a vested interest in promoting his idea with the additional hope of financial gain. I will point out that Dr. Zamboni is a European University Doctor. Practitioners in European medicine aren’t awash in money like in the United States. Values differ. Doctors in his milieu find financial motives in medical science to be unprofessional and vulgar.

It's kind of silly to say the Dr. Zamboni has no vested interest.

His entire legacy is dependent on the success of CCSVI and liberation therapy. Do you really think that Zamboni is going to publish a negative study and stoically say, "Oh well; I guess I was mistaken." I'm sure that he desperately wants the study to be positive, and I can't blame him for this. The same is true for Pharma trials which is why the blinding, methodology, and ethics of the investigators must be rock solid.

[centenarian100]

I am re-posting the above comment to re-iterate my opinion that the study was badly done.

You make valid points about the individuality of MS and MS treatment, but the nature of a clinical trial is that is applies to a single broadly applied protocolized treatment. Even if liberation is only effective in a subset of people with MS, there should at least be some difference in outcomes between the placebo and treatment groups. A lot of MS drugs are modestly effective and only work in some people, but efficacy can still be demonstrated in clinical studies.

Already the fact that the 10-15% PPMS which don't conform to current "auto-immune" model should cast doubt on it

There is actually quite significant evidence that PPMS is an autoimmune disease as follows:

1) most people with PPMS have Oligoclonal bands unique to CSF on spinal tap
2) some people with PPMS appear to respond to b cell depleting therapy (rituximab, ocrelizumab)
3) pathological specimens in PPMS reveal autoreactive inflammatory cells and antibodies
4) PPMS and SPMS have a similar average age of onset, similar average rate of progression, and similar epidemiology

-cent

[centenarian100]

What you say here -- that there is inflammation and immune system involvement as a result of the disrupted flow -- seems to me to clearly answer why someone would stay on DMDs if for any reason their blockages are unable to be treated.

This does not actually make sense for the following reason:

most disease modifying drugs have a mechanism of action such that they would be completely useless if the CCSVI theory of MS is true.

For instance, tysabri works by blocking lymphocyte migration through an intact blood brain barrier. If venous hypertension were causing blood brain barrier disruption and lymphocytes could flow freely into the CNS, why would tysabri be effective?

Another example is glatiramer. This drug does not even necessary enter the blood stream and is believed to work entirely through immunotolerance, like an allergy shot. If MS is not caused by an autoreactive immune system, why would it be effective.

It does not really make sense to take drugs like these if you think MS is primarily due to to venous insufficiency. I suppose you could justify taking some of the other drugs.

[vesta]

To ignore the success stories such as Jeff Beal and Mark Miller and yourself? is so irresponsible.

Don't forget Tiltawhirl.

http://www.thisisms.com/forum/chronic-c ... ml#p199800

I joined TIMS rather late in the CCSVI story and don't really know who is who and what happened to them. Why doesn't TIMS establish a CCSVI registry thread as a great public service?

Best regards,

[MrSuccess]

when I gave a brief history of Dr.Zamboni's 65pwMS >>>> CCSVI ....... I neglected to add that Dr.Zamboni clearly stated that anyone that had the procedure .... was to stay on their MS medications.

Dr.Zamboni clearly did not want pwMS to alter or stop their medicine given to them by their doctors.

This is important to remember.



MrSuccess

[vesta]

Centenarian100 suggests that Dr. Zamboni has a vested interest in promoting his idea with the additional hope of financial gain. I will point out that Dr. Zamboni is a European University Doctor. Practitioners in European medicine aren’t awash in money like in the United States. Values differ. Doctors in his milieu find financial motives in medical science to be unprofessional and vulgar.

It's kind of silly to say the Dr. Zamboni has no vested interest.

His entire legacy is dependent on the success of CCSVI and liberation therapy. Do you really think that Zamboni is going to publish a negative study and stoically say, "Oh well; I guess I was mistaken." I'm sure that he desperately wants the study to be positive, and I can't blame him for this. The same is true for Pharma trials which is why the blinding, methodology, and ethics of the investigators must be rock solid.

Greetings :

Dr. Zamboni’s legacy does NOT depend on the success of « liberation therapy » as originally conceived. He will be recognized as the CCSVI pioneer who opened the door to understanding that obstructed circulation of CNS fluids (venous blood, cerebro-spinal fluid) in MS pathology injures CNS tissue leading to inflammation and lesions. By proposing a solution (angioplasty), he has triggered research which today bears many fruits. That the issue is more complicated than originally conceived hardly condemns his seminal idea. He was hardly the first to notice the connection between MS lesions and draining veins. HE WAS THE FIRST TO SUGGEST A SOLUTION.
Research has shown that blood circulates in MSers from the heart through the brain and back at half the speed of normals. Poor blood perfusion through the brain is a marker for MS. Dr. Zamboni’s legacy will be the creation of the “International Society of Neurovascular Disease” (ISNVD) whose yearly conferences since 2011 feature extensive research into Neuro-vascular disease, MS and CCSVI. CCSVI Alliance research continues to demonstrate the validity of the CCSVI theory while recognizing where angioplasty would be inappropriate (skeletal obstructions.) The early Stanford success stories (with stents – Jeff Beal and Mark Miller) led to Dr. Owiesy’s idea that a disregulated autonomic nervous system can trigger a spasm in the smooth muscle of the brain’s draining veins to cause blood back jets and inflammation. This is a variation on the original idea which may lead to an effective treatment subject to fewer complications than angioplasty.

Centenarian100 apparently denies the validity of CCSVI in MS outright. Apparently she has some expertise in the current drug research, perhaps is a researcher herself I suggest she inform herself about CCSVI and read the research. In the meantime, perhaps she can come up with a drug solution to donnchadh’s problem. His MS was triggered when an accident caused a bone spur to obstruct his IJV. His angioplasties were unsuccessful precisely because the bone was obstructiong the free flow through the brain’s draining vein. He found a neuro-surgeon who succeeded in shaving down the bone spur to free the vein. However, tissue had built up inside the vein so that the obstruction could not be overcome. He has a 10 cm blocked vein which is leading to neurological problems, collateral veins being insufficient to overcome the problem.

Since centenarian100 is so keen on drugs, what medication would she suggest to help Donnchadh with his CCSVI problem?

Best regards, Vesta

[ElliotB]

"Centenarian100 apparently denies the validity of CCSVI in MS outright"


This is also the conclusion of many well educated individuals and numerous studies.


The fact is that at this time, no one knows for sure what the cause is or what the cure might be (but there are many different theories and 'cures' floating around - all at this point pretty much 'scientific quackery'.

[vesta]

"Centenarian100 apparently denies the validity of CCSVI in MS outright"


This is also the conclusion of many well educated individuals and numerous studies.


The fact is that at this time, no one knows for sure what the cause is or what the cure might be (but there are many different theories and 'cures' floating around - all at this point pretty much 'scientific quackery'.

Please direct me to the "numerous studies".

Regards

[centenarian100]

Dr. Zamboni’s legacy does NOT depend on the success of « liberation therapy » as originally conceived. He will be recognized as the CCSVI pioneer

If CCSVI is unrelated to multiple sclerosis (as in the case in several studies) and procedures to intervene on veins are ineffective in treating multiple sclerosis (as is the case in two randomized studies), Dr. Zamboni will not be particularly notable in medical history. He would just be someone who came up with an innovative idea that did not pan out. I still have tremendous respect for his creativity, hard work, and desire to help others.

By proposing a solution (angioplasty), he has triggered research which today bears many fruits.

What fruits? There is no evidence that any of this research is beneficial to anyone.

In the meantime, perhaps she can come up with a drug solution to donnchadh’s problem.

You want me to do this personally?

His MS was triggered when an accident caused a bone spur to obstruct his IJV. His angioplasties were unsuccessful precisely because the bone was obstructing the free flow through the brain’s draining vein. He found a neuro-surgeon who succeeded in shaving down the bone spur to free the vein. However, tissue had built up inside the vein so that the obstruction could not be overcome. He has a 10 cm blocked vein which is leading to neurological problems, collateral veins being insufficient to overcome the problem.

I think this is all bogus and has nothing to do with his MS. People with venous obstructions (i.e. dural venous thrombosis, jugular stenosis as a complication of central line placement, superior vena cava syndrome) are not at increased risk of multiple sclerosis.

-C

[ElliotB]

"Please direct me to the "numerous studies"

There are many that I have read over the past couple of years - you just have to do a search on the web. Here is one for you from 2013:

The End for CCSVI

https://sciencebasedmedicine.org/the-end-for-ccsvi/

"A new study published in The Lancet provides the most definitive evidence to date that chronic cerebrospinal venous insufficiency (CCSVI), a hypothetical syndrome of narrowed veins draining the brain that some believe is the true cause of multiple sclerosis (MS), is not associated with MS."

[MrSuccess]

this sounds like things are getting a little too hot. So what say we dial it back a bit

in the off chance that anyone thinks MrSuccess dons his Zamboni cheerleaders outfit and pom poms
as he posts ......... you would be wrong.

MrSuccess thinks highly of ANY and ALL scientific medical experts.

I firmly believe that Dr.Zamboni and his team ....... are investigating a new and encouraging aspect
of the POSSIBLE causes of MS and other neuro issues. Fascinating stuff,in deed.

for the life of me ..... I cannot understand how anyone ........ can dispute the theory of CCSVI .

We know what happens when blood going INTO the brain is slowed or at worse STOPPED.

So why is it not as important that blood flow OUT of the brain ..... matters as much ?

To argue that one is vital and the other is not ......... seems asinine to MrSuccess.

It seems like yesterday that this amazing research began. Lot's of hair on fire regarding the use
interventional radiologists traveling up the veins , for a look-see. Don't go too far ! Don't go near
the brain !

Well guess what. Now in 2017 .... these same skilled experts are now going up into the brains of
stroke victims ..... and going after blood clots. Imagine.

All of this would have been impossible ...... if those lacking courage and daring had anything to say
about it. I know.I know. Here ...take this drug .

MrSuccess