Goodbye to all that: a short history of CCSVI

[erinc14]

long article

what do you think of it ?

http://msj.sagepub.com/content/19/11/1425.full

one of the authors --Michel rasminsky-- was the first neurologist I saw but I switched after two years as I didn't like him .

[1eye]

I'd like to see Anne Kingston's take on this. I'd like to see some real investigative journalism into the relationship between the "MS" Consortium and Serono. Into the relationship between "MS" drug vendors and the principle investigators and authors of studies that purposely ignore scientific and medical techniques. Into the threats/promises of retribution consisting of removing doctors' licenses for performing procedures at the patients' request, which have been proven safe to a higher degree than almost any other catheter usage. Into the death and injury caused by patients who have had the CCSVI procedure being willfully ignored by practitioners in Canada, in a manner that would shock any snow-bird seeking medical attention in the US.

This is not about science in Canada. It is about medicine. It is about treatment being denied by drug pushers disguised as doctors, when is is sought and chosen by intelligent human beings. It is about universality being too good for "MS" patients, because of the keen desire to maintain the status quo and keep the revenues flowing. It is about a government which whips its caucus to be certain that no legislation takes place on CCSVI, in both the Parliament and the Senate. It is about keeping people from having treatments that have been proven safe and are known to be efficacious in many instances.

I'd like people, even the "MS" Society. to have access to the whole truth.

Isn't there another thread on this same piece not far from here?

[Cece]

Alice laughed: “There’s no use trying,” she said; “one can’t believe impossible things.” “I daresay you haven’t had much practice,” said the Queen. “When I was younger, I always did it for half an hour a day. Why, sometimes I’ve believed as many as six impossible things before breakfast.” Lewis Carroll. Alice in Wonderland

Since when do journal articles quote fantastical literature? As always, there's that hostility and sense of glee and premature absolute certainty.

Brocktoon has been posting about new research, yet to be published, that seems to show where McMasters went wrong and that, in fact, MS and CCSVI are associated when you look at five levels of analysis of the MRV data instead of just one level of analysis. Perhaps that will help Rasminsky realize which side of the looking glass he is on...

From the outset there was healthy skepticism in the neurologic community. Not only did the contention that a venous anomaly was present in 100% of individuals with MS send up red flags, but the theory that a venous anomaly, even if indeed present, could cause MS seemed biologically implausible for many reasons: the fact that the redundancy of the cerebral venous drainage system would be expected easily to accommodate obstruction in single veins; the lack of similarity of the pathology in MS to the brain pathology known to occur with severe cerebral venous obstruction; the failure of the hypothesis to account for the relapsing–remitting character of MS; and the implicit dismissal of the well-established consensus8 that MS is an inflammatory disorder reflecting some as yet incompletely understood derangement of the immunological system.

1) on the contention that venous anomaly is present in 100% of pwMS (Zamboni's data), we have Dr. Sclafani observing it in 99% of the patients he sees clinically, so I have to come to believe that, yes, it is in fact that high
2) on the contention that redundancy in the venous system should accommodate obstruction in single veins, we are often seeing multiple stenoses; at some point, redundancy fails, in engineering or in nature
3) acute venous congestion would not be expected to manifest in the same way as chronic venous congestion; and we are also now talking about this in terms of focal localized hypertension, so how does that manifest neurologically in other conditions?
4) as for how the hypothesis accounts for RRMS, the initial venous obstruction -> reflux -> focal hypertension -> blood brain barrier disruption then dovetails with what is already known about MS, with inflammation and immune system activation following the blood-brain barrier disruption
5) as stated, the immune system derangement in MS is incompletely understood, then it is out-of-hand to prematurely dismiss CCSVI as contributory to that immune system derangement

There is another thread. Obviously I don't mind talking about it again!

[1eye]

The level of madness shown by these people is maddening in itself. How can people with the kinds of health problems we have even survive this kind of ignorance.

The very redundancy this author is so fond of is the best explanation I know of for the relapse-remit cycle. Assume stenoses get worse on their own. A 50% stenosis has a factor of 1/16 its prior blood flow (2^4=16), assuming it has low viscosity, which is unlikely, and complicates things further. A 50% stenosis in an artery can mean life-threatening life-saving surgery. Venous redundancy is not a get-out-of-jail-free card. If you can grow enough new capacity to replace what you lost to stenosis: hey, presto! Remission...

These people know that. They know a lot, but choose to ignore it for the basest of reasons. If quotations are needed, here is one:

It's the information that makes the country strong.

-Lenny Bruce

[Cece]

How about this?
"Once you eliminate the impossible, whatever remains, no matter how improbable, must be the truth." -- Arthur Conan Doyle

[erinc14]

Alice laughed: “There’s no use trying,” she said; “one can’t believe impossible things.” “I daresay you haven’t had much practice,” said the Queen. “When I was younger, I always did it for half an hour a day. Why, sometimes I’ve believed as many as six impossible things before breakfast.” Lewis Carroll. Alice in Wonderland

Since when do journal articles quote fantastical literature? As always, there's that hostility and sense of glee and premature absolute certainty.derangement

I noticed that !

[1eye]

1
Understandable patient frustration with the lack of effective treatments, particularly for the progressive forms of MS

No, it's a fear on the part of the neurology community that a non-neurologist has found a treatment that is better than anything they have, and covers a wider range of sufferers, because of the artificial "relapsing"/"progressive" gateway they have erected to withhold treatment from half of the "MS" public. That is what is frustrating.

2
Patient resentment and suspicion of physicians who, at least on the CCSVI blogs, were widely perceived to be in the pocket of the drug companies because they prescribed expensive drugs.

Rightly so. The growing market for these ineffective treatments is huge: more than 10 billion dollars are being spent each year on conventional drug therapy for "MS", and it is not doing anything for the "progressive" half.

3
The sudden emergence of a procedure that offered a tantalizingly simple and attractive solution to a complex problem.

Sudden? Come on, 150 years is not sudden. Simple, no. Complex, yes.

4
The effectiveness of a highly proactive social network, highly penetrant within a limited community.

Effectiveness. Highly penatrent. Proactive. All good things. Next?

5
The initially deferential response of the MS Society to the enthusiasm for a proposal that, though superficially attractive, was transparently highly questionable on scientific grounds, together with the failure of knowledgeable scientists to vigorously engage in a respectful way in the public discussion.

Gotta love the language. Transparently highly questionable. But only to those whose minds are already made up. We have seen about five years of constant denial and questionable studies claiming to refute "finally". At the same time there has been a wealth of new research on vascular pathologies, even in other currently incurable brain diseases. There is a lot of interest and new knowledge about the circulation of brain and spinal fluids.

6
The perception in Canada that governments at both federal and provincial levels, responsible for health care, could be influenced by public pressure to intervene in scientific and clinical matters.

Correct. The pressure has to be applied in private. The other problem is that truth can't be learned by voting. No matter what parliament does. They can, though, cover it up at the executive level.

7
The difficulty on the part of the media, patient population and politicians in distinguishing what constitutes scientific as opposed to anecdotal evidence.

Remember these facts: Anecdotes are evidence. They can be true, and accepted as science, by all of the groups, and scientists as well.

8
The difficulty on the part of some elements of the press and some elements of government in distinguishing between the government’s obligation to make choices about the allocation of scientific resources to different fields (e.g. physics vs. medicine) and their obligation to leave funding decisions with in specialized fields to those scientifically qualified to make such judgments.

Gosh, that's a hard one to explain. Let'see, difference between two goverment obligations... "some elements..." I get it. Why didn't you just say a certain female ember of Parliament and a certain Senator, not a hockey player? ...the press... Could that be Diane Kingston?? I am having difficulty too, so I guess I'm in good company. All I have to say is that I think if you are looking for funding from this government that is just the kind of DoubleSpeak they need. You're a shoe-in.

9
Most importantly, the irresponsibility of certain elements of the mainstream media that repeatedly crossed the journalistic line between reporting the news and making the news.

So they made it all up just for the publicity? I don't know, they aren't as good at it as certain doctors... Making things up: I can think of a few real experts who are specialists...

[NHE]

The difficulty on the part of some elements of the press and some elements of government in distinguishing between the government’s obligation to make choices about the allocation of scientific resources to different fields (e.g. physics vs. medicine) and their obligation to leave funding decisions with in specialized fields to those scientifically qualified to make such judgments.

OK, so why aren't there any CCSVI experienced interventional radiologists on the advisory panels? The neurologists have been aware of reduced cerebral perfusion in MS for years. However, they put the cart before the horse and attempt to explain it by saying that reduced brain activity is causing the low blood flow. That sounds a bit backwards. Why can't the pipes just be plugged up? Do we blame the brain damage from an ischemic stroke on the brain? Do we blame the heart for the heart attack or the plugged up arteries?

[1eye]

The difficulty on the part of some elements of the press and some elements of government in distinguishing between the government’s obligation to make choices about the allocation of scientific resources to different fields (e.g. physics vs. medicine) and their obligation to leave funding decisions with in specialized fields to those scientifically qualified to make such judgments.

OK, so why aren't there any CCSVI experienced interventional radiologists on the advisory panels? The neurologists have been aware of reduced cerebral perfusion in MS for years. However, they put the cart before the horse and attempt to explain it by saying that reduced brain activity is causing the low blood flow. That sounds a bit backwards. Why can't the pipes just be plugged up? Do we blame the brain damage from an ischemic stroke on the brain? Do we blame the heart for the heart attack or the plugged up arteries?

You know I was wondering the same thing myself. Then I realized that the panel consisted of consultants. Consulting, a favored activity in these environs, works like this: after scouring the countryside for available experts, you hire a bunch, give them an answer and they go to lunch. Over this lunch, and probably several more, they discuss the answer you have given them. After an acceptable time, they have a hard-won thought or two. In a formal report, they tell you their thoughts, and how the lunches were.

They conclude by presenting an executive summary of the answer you have given them, and their expert opinion on what the question was.

[vesta]

The article was recently featured on CCSVI Locator and here on CCSVI Research. Yesterday I posted the following on Daily Kos (Nov 11, 2013 8:17 pm CET, 11:17 am PST)

Recently I responded as follows to a series of entries on Thisisms.com by MS-UK intended to discredit the CCSVI theory for MS.

“We can now see that symptoms of paralysis require a thorough examination of the structure surrounding the central nervous system – veins, arteries, cerebrospinal fluid, bones, muscles ligaments. Only then can a diagnosis and appropriate treatment be proposed. For some reason Neurologists seem unwilling to do this. And the Big Pharma/Neurology lobby with the assistance of the FDA and national MS Societies (MS-UK for instance) are doing all in their power to impede development of CCSVI diagnosis and treatment for MS.
Unfortunately, MS CCSVI is too easily discredited by the insistence of Angiologues to monopolize CCSVI treatment through Angioplasty. A “Skeletal” MS implies that pressure or restriction ON the vein rather than stenosis IN the vein is the problem and for this Angioplasty will prove fruitless, if not deleterious. It is touching of MS-UK to report multiple “scientific” studies discounting CCSVI MS on the Thisisms.com website. “Touching” but unhelpful. What would be really helpful is a thorough survey of the approximately 30,000 Angioplasties performed thus far for MS. But of course this will never happen because CCSVI treatment for MS has been driven underground, the techniques and competences are varied and follow-up care sketchy (thanks to interest groups like MS-UK).”
Word is getting out. As an illustration, note the following post by Wendy Hess on CCSVI Locator October 25, 2013
All heavy metals can cause lesions on an MRI if they accumulate in a sensitive area as is the nervous system ( and lesions lead to an MS diagnosis). Heavy metals can come from toxic exposure OR from improperly digested nutrients, like Iron, that don't exit the body in normal excretion process. The reason they get to be a problem in the brain/spinal column is if the CSF (Cerbral Spinal Fluid) flow is disturbed , impaired, or in back flow where the body cannot flush them out normally ; they accumulate and block the -nutrients in/ waste products out -cycles . This is explains why spinal taps can confirm diagnosis- high T cell counts go to the aid of the nervous system, but cannot really help there because it is a physical problem that needs addressing!
How does this happen? Many skeletal disruptions from whiplash, accidents, the birth process, or skeletal genetics can impede CSF flow. Resulting lesions can sometimes, but not always, take years to do damage and be realized in MS type symptoms. Heavy metals can accumulate and become deposited to block blood flow. One day, the answer to the MS riddle will be uniformly recognized as the result of obstruction from a COMBINATION of CSF and Vascular flow. That's the piece of the puzzle Zamboni needs to recognize,too. If heavy metals (Iron included) cannot leave the central nervous system as the body has intended, and they accumulate to block nerve transmission, eventually lesions and subsequent possible disability are expressed. It begins in obstruction of the CSF flow. xxx

On Thisisms.com a Mother of a 10 year old boy who developed “MS” symptoms after an accident reported that Ayurvedic treatment helped him. (She refused MS drug treatment for him.) The following was my response.
““About 15 years ago a badly handicapped French woman told me that while in India she had enjoyed an Ayurvedic massage in which several women worked on her and afterwards she could walk normally again. This made no sense to me at the time, but now I realize she must have CCSVI venous stenosis. Her testimony resembles that of successful balloon angioplasty which opens the venous blood flow in MS patients implying that the massage opened up blood flow to the Central Nervous System. Upon returning to France she lost the benefits of the treatment. Acupuncture helped her, probably by enhancing blood circulation, but nothing like the dramatic improvement in India. She probably has a serious vein stenosis and is in need of angioplasty (or needs daily massages- an unlikely possibility) OR needs treatment for some kind of skeletal obstruction of Central Nervous System blood/cerebrospinal fluid flow.””
Now tell me, MS-UK, if a 10 year old (or 7 year old) child who has suffered a head/neck/spine injury comes in with “MS” like symptoms, are you really going to put him on Chemotherapy or DMDs (Disease Modifying Drugs)? Wouldn’t it be better to see how the body structure impacts Central Nervous System fluid dynamics, (Blood/Cerebrospinal Fluid flow) and correct the physical injury?

I wish the Big Pharma/Neurology lobby, their MS Societies, and the FDA would butt out of my business.

Previously published on MS Cure Enigmas.net, Thisisms.com and CCSVI locator

[NHE]

Now tell me, MS-UK, if a 10 year old (or 7 year old) child who has suffered a head/neck/spine injury comes in with “MS” like symptoms, are you really going to put him on Chemotherapy or DMDs (Disease Modifying Drugs)? Wouldn’t it be better to see how the body structure impacts Central Nervous System fluid dynamics, (Blood/Cerebrospinal Fluid flow) and correct the physical injury?

Before you go attacking MSUK, know that he is doing ThisIsMS a great service by sharing MS related news with our site.

Hi Harry, we at MSRC report all the MS news, without prejudice, as is written.

[vesta]

Now tell me, MS-UK, if a 10 year old (or 7 year old) child who has suffered a head/neck/spine injury comes in with “MS” like symptoms, are you really going to put him on Chemotherapy or DMDs (Disease Modifying Drugs)? Wouldn’t it be better to see how the body structure impacts Central Nervous System fluid dynamics, (Blood/Cerebrospinal Fluid flow) and correct the physical injury?

Before you go attacking MSUK, know that he is doing ThisIsMS a great service by sharing MS related news with our site.

Hi Harry, we at MSRC report all the MS news, without prejudice, as is written.

I wish to apologize to MSUK and NHE for having written such a rude, disrespectful post. I trust MSUK won't punish ThisisMs for having an obnoxious loudmouth like me as a contributor. I have been receiving the MSUK e-letter now for 3 years and can see they are doing their utmost to inform MS patients. I confess at disappointment to seeing so many negative entries under CCSVI. Allow me to suggest to MSUK editors to print Joan Beal's (cheerleader)comments "What has changed" posted by NZer1 on July 19, 2013 under the CCSVI thread.

Again, please accept my sincere apology, Vesta