This Is MS Multiple Sclerosis Knowledge & Support Community

Two thoughts about Scorpions initial post.

1.
a) You stated that the denialists just pick on one paper.
r) I think since Zambonis original paper we do have seen some serious progress. There have been trials around the world where Zambonis work has been repeated and brought forward. Even if the numbers are controversial, everey published outcome does propose that CCSVI does have a (more or less, between 50% and 90%) correlation with MS. And intervention of stenting or ballooning does have some effect on the disease course which is not easy to explain with a bare placebo effect.

2.
a) You stated that there are usually replys to the original paper that put some heavy doubts on it and the inferred theory.
r) There have been replies but:
- some of them simply put the facts wrong (and thats not a point of perspective)
- others say more research is needed to say what is right and what is wrong.
Things as chicken - egg problem. How to make a propper diagnosis of ccsvi.
What procedure is required to get rid of ccsvi. What will be the benefits of "liberation".
- imo. there was no reply that puts fundamental doubt that ccsvi might be related to MS.

Imo. the ccsvi research community is currently doing a fairly good job to come up with further evidence for the theory as well as defining the required procedures and evaluating the potential benefit.

At the current point of knowledge we gained it might be controversial what the role of ccsvi is in MS but ccsvi is a rout that definitely warrants further investigations. Especially when compared with the hopes that can be justified in terms of planed immune-modulating interventions (lets say Phase-II trials) I do think that ccsvi research does have a very good cost/potential benefit ratio.

Concluding I cant see why denialism should be applicable to ccsvi as the promoters do really try to advance the knowledge-base and are willing to do rigorous scientific and clinical research.

--Frank

You bring up some good points Frank. Let me try to sum up my arguments with 2 points. You have to remember when I refer to the "denialists" I am not referring to anyone who is interested in CCSVI research or I myself would be a denialist. I am referring to the people on this forum who

1. Since Zamboni's original "study" was released there have been Thisisms members, bloggers, etc. who claim that anyone who questions the validity of CCSVI is a part of some grand conspiracy. When I first questioned the scientific validity of Zamboni's original results certain members on the board claimed I was part of the "conspiracy" simply because my wife is involved with stem cell research. Friedman is a part of the conspiracy because of he is "invested" in his current research. Neuros who express doubts abot CCSVI are part of the conspiracy. The MS Society, because it has not thrown billions of dollars towards CCSVI research, are a part of the conspiracy. I believe at one point Lyon was part of the conspiracy as well(although that would not surprise me Check out the CCSVI forum because it still continues. ANY group, person, organization who does not support CCSVI with words, money, or action must be a part of the conspiracy. I am sure if CCSVI is proven, through rigorous scientific research, to be a result of the "MS process" it will be due to a conspiracy on the part of the researchers carrying out the investigations. This kind of denialism does nothing but hinder scientific progress.

I will get to my second point later Frank. Our community pool opens today and my daughter is waiting very patiently for me. It is hot in NC! MS symptoms here I come!

scorpion wrote: I believe at one point Lyon was part of the conspiracy as well(although that would not surprise me

Evidently I'm considered to be "Malden" now so it only seems fair that the name "Lyon" be forgiven of past transgressions!

When it comes to the open-mindedness of some members in the CCSVI forum I am with you Scorpion. However, with all due respect to our members, the opinion of some MS patients is not that terribly important to me - while it sill may be sad that a critical discussion is not easy there.

BUT
We all have seen promising interventions being pursuit on a sluggish pace - e.g. HDC!!!, statins, EGCG, Minocycline, helminth...
The MS DMDs industry has an annual business volume of (i think it was) 7 billion US$. The Pharma is omnipresent, be it in my neurologists office or in the MS societies. They sponsor congresses and meetings, influence university doctrine, give funds for research and buy out patents.
Its not necessary to cling to conspiracy theory but its obvious that there are heavy monetary and very well lobbied interests, that do not want the "cure" of MS to be a "simple" surgery.

In addition MS has been a discipline of neurology and immunity for decades. Its common that this professional guild has a natural averseness to "admit" they were heading in the "wrong" direction or at least overlook a potentially very important factor of MS. It thus cant be expected that the neurologists are objective and without bias in this regards.
I think I might have felt the same and taken a defensive stance, if my work and the whole direction of the approach I pursued for years was that fundamentally taken into question.

Therefor the dedicated and sometimes very emotional efforts of MS patients and groups are imo. ONE appropriate and necessary counterpart to make sure CCSVI does not run off into sand but is properly and quickly advanced.

--Frank

Here's part of a really great blog written by one of the smartest guys I ever met 'round these parts...

Although there have been some incredible advances made in our efforts to heal sick humans over the last 50 years, there are still vast swathes of patient populations whose illnesses remain poorly understood, insufficiently and ineffectively treated, and ultimately incurable. Problematically, many of these patient populations generate billions and billions of dollars for the modern medical hierarchy, a situation that sets up a paradox within our profit driven medical establishment. Cure these patients, and vast sums of money and an elaborate infrastructure would simply evaporate; keep them perpetually reliant on hyper expensive medicines and medical procedures, and reap the fruits of an unending money machine.

Before I am accused of being a conspiracy nut, let me state outright that I do not believe that there is a cabal of evil, mustache twisting, demonic connivers assembled around a huge flaming conference table, snacking on deep-fried baby’s arms while plotting to keep cures and remedies hidden and out of reach from the desperately ill. If this were the case, the solution would be fairly straightforward; simply "out" the conspirators, and the walls would come tumbling down. Rather, the problem has become incorporated into the system itself, insidious and inherent, the logical outcome of the evolution of a medical industrial establishment that has come to view sick people as consumers and horrendous illnesses as opportunities for tremendous financial gain. This system does not require people with malicious intent to keep it functioning; it only needs decent people doing their appointed jobs to the best of their abilities to keep the gears turning.

to read the rest, go to:
link to wheelchairkamikee's blog
PS...Marc has been tested by Dr. Sclafani, he has severe stenosis, and he now writes about this situation on his blog. And if you called him a denialist...he'd get a chuckle, I'm sure.
cheer

cheerleader wrote:PS...Marc has been tested by Dr. Sclafani, he has severe stenosis, and he now writes about this situation on his blog. And if you called him a denialist...he'd get a chuckle, I'm sure.

You're right cheer, that was really rude of scorpion to call Marc a denialist.

I seem to have missed that particular post so it would be appreciated if you could link to it.

If such a post doesn't exist, what is your point?

Why in the world would you bring Marc into this? Are you trying to create some kind of conflict between him and I?? If I would not know better I would think you were trying to make it seem that I am attacking one of the most well respected man on this site in order to get everyone to throw boos and hisses my way. Good thing I know better.

No, I said "if"...no one said you called him anything, Scorp. Sorry if that was taken in the wrong light. I just thought Marc explained the so-called conspiracy aspect better than I ever could...
apologies-
cheer

I don't consider Marc a denialist.

Still, I'd have to disagree with Marc that it's within the realm of definition that a decent person doing their job to the best of their ability could intentionally overlook or outright suppress that which could benefit MS'ers. It goes without saying that intentional overlooking or suppressing is what would be required by SOMEONE in the chain of command.

Considering medical research history, things which act on and maybe "sort of" control symptoms don't come often enough, but they do come.

Discovering causes of and mechanisms of diseases, and therefore significant advances, come RARELY so odds alone seem to preclude the possibility that someone is oppressing or has oppressed something beneficial to MS'ers and therefore doesn't support that pharmas would oppress something now or in the future....or that they would be able to pull it off without getting caught.

No need to apologize Cheer. We are all in this together. That is what sucks about written words you just don't know how to take them.

Scorpion,

I know you were not talking about Marc (wheelchair kamikaze)but I would suggest you listen to him on "Global CCSVI Radio" when you get a chance. http://www.blogtalkradio.com/omario/201 ... bout-ccsvi

I think that Marc’s comment have always been rational and intelligent but I think what you would appreciate the most is that he looks at both sides of the issue when he’s evaluating this new theory. Go on...listen if you have some free time...just put it on while you are doing some mundane house chores. I know you are not a fan of CCSVI but I don’t think you’ll find much to disagree with if you listen to what Marc is saying

Daisy3 wrote:-sigh- Try being married for less than 3 months and then finding out that your hubby has MS. We had only known each other for a very short time before we agreed to marry.
His MS is not terrible yet, and he really is doing the whole 'denial' thing. Right up until he trips, falls, or limps because he has been walking for longer than 20 minutes.
I can't be in denial. I tend to deal with problems head on. This MS thing though, it's killing me. I don't know how to deal with it, and I am aware that CCSVI might not work,but I am still going to part with cash in the hopes that it MIGHT work.
Sadly,I am a realist. Or,some might say, a cynic.
Take your pick

Sorry I hadn't noticed this post earlier Daisy. There is nothing easy about MS but my situation and decisions have been easier than yours. We were married for 24 years before we had any idea that she had MS so her MS diagnosis with all completeness is "our" diagnosis. In my situation it's almost a blessing not to have any considerable options to have to mull over.

While the diagnosis of MS alone seems to hang an ominious dark cloud over your life which had never been there before. Physically for my wife the MS diagnosis has only involved the week of slurred speech that got her diagnosed and the worry of what the future holds and when the other shoe is going to drop.

I guess my point is that it's been REAL easy for my wife to be in denial because, other than the diagnosis hanging over her head, she has no daily reminders that she has MS.

Problematically, many of these patient populations generate billions and billions of dollars for the modern medical hierarchy, a situation that sets up a paradox within our profit driven medical establishment. Cure these patients, and vast sums of money and an elaborate infrastructure would simply evaporate; keep them perpetually reliant on hyper expensive medicines and medical procedures, and reap the fruits of an unending money machine.

This is the type of statement that is readily accepted as fact when these arguments are made but I think it is constructed more out of cynicism then reality. Medicine does continue to advance in multiple fields and there is money to be made in improving treatments and procedures.

The real issue to me is that the amount of proof it takes to satisfy the industry that an idea is worth investigating is dramatically higher then the amount of proof it takes for a person involved with the disease to think its worth investigating. Like you could parallel park several planets in the space between those two perceptions. The decision is money-driven and within a horrible catch-22 but it isn't an anti-cure framework that is holding back CCSVI. My 2 cents. All due respect to marc who is very smart and eloquent.

I think there is a whole lot of denialism out there when it comes to ccsvi,
but somehow I don't think it is us liberated people that is in denial.

I know how I was before the procedure, and I know how I am now.

I had poor bloodflow in all major wessels draining my diseased central nervous system. I was feeling lousy.

I have now normal blood flow in all three major wessels from my cns. I am feeling better.

We must be able to say that any doctor not embracing the testemonies from hundreds of liberated patients with a bit of optimism and enthusiasm is in a state of denial.

The danger of this denialism isn't just that spreading the research funds on a more diverse spectrum when looking for helpful treatment, the danger of this denialism is actually delaying much needed treatment for very sick people.