This Is MS Multiple Sclerosis Community: Knowledge & Support

I guess that's a misused french word. I think he meant battle to get a research grant. But not sure.

Marc

I can be blamed for working to accelerate the research-- I will gladly accept that charge. But the truth is, I only ask patients to bring the research to their local vascular doctors and interventional radiologists--and that is how more doctors are coming on board. It was a Kuwaiti woman bringing the research to a vascular doctor that got him interested- and now a nation will be tested. Dr. Sclafani has noted today that it was thru bestadmom sending him the research he became involved. Same thing for Nicole at Georgetown. That's all I've been advocating for, ever since last year. Go local. Take the research to vascular doctors and interventional radiologists. I've also worked to educate MS patients as to the facts of their disease...what is theory, what is known, according to published research.

I'm not angered by the speed of this...I am angered by the denial.

"Time equals brain" as stated by Dr. Freedman, is a concept utilized in treating stroke victims. Vascular doctors around the globe are looking at slowed perfusion, hypoxic injury and venous reflux in CCSVI as a potential venous stroke, and taking it very seriously.

The only foot dragging we've seen is in main stream neurological circles- and they would be upset whether or not this was patient driven. They didn't exactly embrace Dr. Schelling's research 30 years ago, and he was quiet and very respectful. The fact is, vascular doctors are now being very cautious, getting their IRBs, setting up studies, and they are very interested. We would like to see their studies funded...That's what we're asking for.

I'm no longer offended by quips on the internet...kinda toughened up in my old age There are many old time TIMSers that know me-and many of them gave up on here, because they grew tired of the sniping and baiting. They kinda think I'm nuts for still posting. But I'm a tennis player, and love to keep the ball on the court. And I always finish the match.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

I believe that the term "competitions" is used in Gov. circles for the activity related to securing a job or contract. At any rate, it's all up for good science proposals.

Cheer Said:

I noticed that, too. The other organized medicine wo/men are happy to look into CCSVI and act if appropriate.

Lyon wrote:

"Regarding Freedman's outlook specifically you're probably right but my "whoa" point was that the medical field would agree with Freedmans "whoa" because patient CCSVI enthusiasm has grown exponentially yet the scientific knowledge of it hasn't improved to date. The medical field would love the CCSVI'ers to take a deep breath and chill because advancement and acceptance is only going to proceed at a rate in which knowledge advances anyway. NOT whoaing is just going to add to the frustration for everyone involved"

Oh, mi scusa, I was definitely referring to the those in the medical field, such as Freedman, on the 'whoa'; sorry for the confusion. As regards 'the medical field' wanting CCSVI'ers to take a deep breath and chill', this does not seem to be the case in Kuwait. I do not have to wonder why this is so for their doctors and government see a problem that has a good chance of being 'fixed'. I refer to CCSVI.
I do a lot of deep breathing, as it is part of my ongoing yoga practice and have yet to feel that 'not whoaing' is adding to my frustration, ('for everyone involved' feels a bit presumptuous) if frustration is what we're discussing. It seems to me we are talking about quality of life.
I am indignant, not frustrated. Insulted, not whining. For it seems to me that it is doctors like Freedman (interesting name for one who hardly seems like a 'Free Man') who are making Zamboni's efforts more difficult by posing suspicion and casting a glaring eye at his hard work. It's easy to sit on the outside and criticize. I have had the pleasure and the honor to have met both Zamboni and Dr Salvi, an incredibly intelligent, 'out of the box thinker' and Zamboni's right hand man. HE is a neurologist who is getting in the trenches, not taking reports from the local papers.

As far as 'advancement and acceptance only proceeding at a rate in which knowledge advances', I would ask exactly how does knowledge advance? Exactly at a rate in which advancement and acceptance proceeds is a possibility.

Peace,
Zina

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Lyon wrote:

I assume your view is that we are waiting for proof so cannot have 'more proof.' The crux about this is evidence, you think more evidence of the right kind is needed. I guess everyone will accept that. I take it you also think this must be science based. Again not much to disagree with. But two things I think you are very mistaken about.

What has been described recently as an 'initial, preliminary theory' by opponents of CCSVI was in fact published 'as a theory' in 2006. Hysteria did not ensue. Nor was there much interest especially from the MS Societies. The reason this has now come to prominence is partly because of TV but more importantly because of patients raising the issue themselves. Patient advocacy is what is driving this and thank god we have some strong advocates on our side. If this had not happened noone from the MS Societies would be saying anything about CCSVI now.

But is that enough? Is it time to stop ? Have we really set the ball rolling and will more advocacy merely slow things down? It is clear that there is a back-lash. But we must really look at where that back-lash is coming from. You cannot expect much else from neurologists except incomprehension or opposition. They do not know about veins. They are experts in nerves. It is like asking and electrician to fix your plumbing. If they are an ordinary doctor they have to follow the guidelines they are given. In the UK if the PCT's don't approve you cannot do anything. I expect there will be a similar body in the US and Canada. If the PCT's advice changes they will change. Until then nothing much will happen. This is not real opposition.

Is it the academics whose backs are being put up? Well obviously some of them, but which ones. How much criticism comes from phlebologists or vascular specialists? More importantly what importance will other academics attach to the opinions of a researcher who has no background in vascular research commenting about CCSVI? The answer is not much. Freedman's ex cathedra pronouncements only have weight now because of his position. Unless he now gets involved in CCSVI research and develops a reputation in that area his present and future opinions will not count for much with other academics. And other academics (and excellent practitioners) will get involved. I am certain there are many younger and very able researchers who are keen to make their reputation in this field. They don't want the interest in this area to die down, quite the opposite.

But the third group is the important one. This is where the real battle is. I am talking about the various bodies who decide or influence who gets funded to do research. And who advises these bodies. This is where people like Freedman have real power. They will use their position to deny or choke off funds for areas which threaten them. This is definitely a battle which has not been won.

I think an awful lot has been achieved by patient advocacy and I don't think that 'organized medicine' is doing anything in response except what can reasonably be expected of them. But that is not opposition. There are able practitioners and keen researchers wanting to take CCSVI forward and they will welcome our support and encouragement. But make no mistake there other people who wish to use the money to fund research which will discredit CCSVI or more likely simply fail to prove anything. The amount of funds the MS Society is currently talking about is very small which says something in itself. If this round of funding generates a set of poor inconclusive results. Or results based on very small samples or aimed at proving trivial aspects of the problem then the stage is set to refuse to pursue what is 'obviously a dead-end' in the next round of funding. The really important test will come when the current proposals are published. We must do our best to make sure the right kind of research is funded. Research which will quickly lead to widespread treatment. If none of the approved research is aimed at that then there must be an outcry.

As usual Joan is right. Advocacy for CCSVI needs to be kept up. Those forces who are likely to help us will be encouraged not pissed off. Whether you think the opposition has principles or not we must keep them honest.

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"They feel it is being pushed too hard"?

Here comes the mysterious all-encompassing nebulous They again lol.

And they are motivated in equal/opposite directions by feelings.

I beg to differ, what is "being pushed way too hard with little supporting evidence?". Testing? Operations in foreign countries? A few hundred out of over half a million who've been treated for an identifiable condition? Cry me a river if I care not a whit for their feelings, whoever "They" are.

It's nice to have the same revolving conversations for the past 8 months I've been here, nothing really has changed in the discussion, but awareness, that whole "rolls off the tongue" feel, oh boy has that gone off in leaps and bounds. I agree with the previous poster, if not for this whole awareness thing, CCSVI would have been re-buried again for another 30 years, no doubt about that at all. Some dribs and drabs around the edges, but few of us would have seen/heard any of it anyways....

Where was high-science since the mid-1800's anyways in regards to this? They've hardly an unassailable position in this. Oh NOW they want more evidence? NOW they "feel" it's being pushed too hard after being summarily dismissed and ignored for so long so they could get rich off mice futures?

All I can say is thank GOD someone had the tenacity to take on the high-minded entrenched leviathan which prefers being stuck in the mud on shore rather than venture out into the open sea for a spell...

I wonder how many of "They" would skip up to a sick person and say, "hey we'll get right to you in about 30 years when every scientific "i" is dotted, in the meantime, have some drugs!".

Mark.

_________________
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

Cheerleader.. Joan..
I am only one ..but suspect I represent many.. thank you for continuing to support TIM's.. as I am unable to participate on facebook ...I look for and respect your words..I only hope that you stay till the end.. or I should say.. the beginning.
Thank you,
pCakes

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You know, Lyon, how do you know what organized medicine thinks and feels? Are you in bed with them? Who are you referring to when you say "they"? The ones who have been on TV or in the papers, or other ones you know? What about the neurologists who DO find this CCSVI intriguing?? Are they now, not part of the "they"?
I think if we are always called on to be specific in our statements, you should try to be, too.

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Could you please supply me with references to what you claim? There is no doubting that I disagree quite a lot with you, who doesn't? If we are going to be picky-picky, then I think we should abide by the rules we hand out.

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