This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi,

I just visited a conference about English law (I'm a German judge). There is a Common Law principle about punitive damages in case of bad medical treatment or advice which results in a loss of a chance of a cure if the chance would have been 50 % or higher. This applies for the U.K., Canada, New Zealand or Australia and I guess there should be something similar in the USA, too.

Moreover we were told that Anglo-American judges consider their international responsibily to be wider than German judges do, i.e. that also Non-Americans might share in a class action procedure.

Of course I know that at the moment CCSVI is considered to be unproven but as times goes by and evidence gets clearer and clearer we might reach that level.

I'm really thinking about sueing any doctor who is trying to hinder me in getting healthy again or even to get a MRT. And of course the pharma companies are on my list, too...

Hi Ana. Can you actually sue when there so far is no proof, that the "cure" will work? Yes, we all hope, that Zamboni's theories will prove true, but so far there is no really evidence. When the results from trials firstcomming in the new year have been published, then we have something substancial in our hands, and can demand action. In my opinion, not before that.

The next 3-4-5 months will be very long, just waiting for evidence!

I have some experience in the law on this matter and can help to orientate on a class action suit in the preliminary stages. I lost my son to this illness which has had a known cure for 50 years but which has been suppressed for the ulterior motives of the global medical industry.

Moreoever this disease was handpicked to ravage people in Northern climates. These people are generally gullble, complacent and led to believe they have medical systems that care and research their illnesses.

Why else do Africans not have walkathons to raise money for AIDS research? They are not whipped up into thinking their governments provide help.

Anyhow please send me a message if you want to get something going (or prepared) in this regard. Thank you Ana for your idea. Please don't stop helping us!

I Agree. The fact that the CCSVI initiative has to be driven by people like us shows that the govt., agencies, policy makers have collectively failed.
Our life is torn between greedy people who want to make money on one side and by powerful but inefficient/indifferent people on the other.

Thanks for your replies. Of course at the moment it might be too soon to sue someone.

But we should let know them that denouncing Prof. Zamboni and his fellow doctors isn't just unfair and unethical but might be also dangerous in the end. So they might know that we'll keep in mind who really tried to denounce and hinder these researches or tries to keep the knowledge away from the patients.

I'm not a fanatical and there are a lot of doctors who do a fantastic job, e. g. my GP is one of them. But there are also some of them with - let's say - "social" defects and I feel a pain in the a** that they or some big enterprises might get away with their doings.

@reg613: Thanks for your kind offer. I'm sad what happened to your son. The thing with the Africans also has come to my thoughts before. In the long end we are only numbers in the account books of others.

@danegirl: As I wrote, today is probably too early for suing. But time will come if the established doctors stay so hostile towards CCSVI and hinder people from doing even the simple not dangerous tests for CCSVI.

And the class action suits are really a threat as they bundle the interests of lots of people in one procedure. The individual usually doesn't get so much money but it can hurt big companies a lot. Even in the E.C. they will establish this in the nearer future. At the moment it doesn't exist in most of the European countries.

But in case of a class action e.g. in the USA you could be probably join in even if you're Danish or German because you're also suffering from MS (or better, have CCSVI ). And usually these class actions are done by specialized lawyers and often they only get a (high) pay in case of winning.

Golly, let's not talk about lawsuits yet !! This CCSVI news has only become widely known within the last month. If scientists and neurologists and MS societies were not aware of CCSVI before now they have not suddenly become a cabal against us !! As for the pharmaceutical companies, they will have to adapt.

I think that right now should be a positive thrust to keep this CCSVI hypothesis front and center in everyone's attention. To threaten any lawsuits would be counterproductive at this point.

I think that we are just beginning the fight to get this treatment recognised and there surely must be better ways to get the medical community to take notice than to start sueing them. Putting people in the dock is not likely to get them on our side. Public pressure is what will get the ball rolling so we should do all we can to raise the subject in any way we can and as often as is necessary until something gets done.
Reg, I feel for you, not least because my daughter is not prepared to live life unable to look after herself. She has already told me that life would not be worth living when the time arrives when she has to rely on others to wipe her bum....

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Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.

Hi Ana, thanks for your comments and welcome! My insurance paid for this procedure, so no class action for me, but it sounds like a good idea if for nothing else, to wake em up that we refuse to hear anything but progress in this area. Not sure if I would sue any particular doctor per se. Last thing we need is doctors dumping MS patients for fear of reprisals. Is there any specific precendence related to this other than common law theories? Only reason I ask, is in sue-happy America, our lawyers are pretty keen on how to squeeze blood out of a turnip, if it's actionable, they'll do it. If there's dollar signs, they'll do it. So it must have been done already.

I'm not suggesting to pursue this avenue at all, just wondering what cases would be used in support.

Mark.

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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

Ana,
I am not familiar with the law but I think you are spot on. It is true that the link between CCSVI and MS has not been established in terms of cause and effect, but it is equally true that Zamboni has demonstrated, beyond doubt, that MS patients have problems with the venous drainage of blood from the brain. It seems consequential to me that MS patients have acquired the right to be tested for CCSVI. This fundamental human right to health should be enforceable by the law.
GiCi

This is so interesting! I just complete 1st year law, so totally see where you're coming from.

Not that I necessarily think this is a good idea (I don't think it's a good idea to stronghold those medical professionals who have genuine concern for the safety of their patients), but I suppose that you would just have to prove that opening veins has been shown to help MS symptoms on the balance of probabilities. You wouldn't have to prove it beyond a reasonable doubt.

Nor would you have to prove that CCSVI causes MS - that proof is sort of irrelevant once you show that treating the former helps the other (it really gets to me when researchers assert that they have to prove cause before advocating the treatment, when all that is required are confirmatory studies of Dr. Zamboni's work).

Dr.'s have a duty to be informed before recommending treatment, so I suppose that they also have a duty to be informed when they don't recommend it. That is, they should not avoid recommending or supporting a patient in pursuing a treatment when it could be beneficial without being totally informed (that is - they have to have read the papers!).

I don't have the legal experience you have Ana, but neat idea!

Theresa

Now Ana, your approach is one I like!! I have been curious about medical ethics and class actions, myself. Getting the lawyers involved would really add muscle. Aussie lawyers would be falling over each other to act for clients.

Phil

My ongoing rant and contention is how can MS patients be denied the right to have testing for CCSVI? Dr. Haacke has developed the sortware, Dr. Zamboni & team have described the method, and patients without MS can get MRV and Doplar whenever the doc orders it>

We are not discussing treatment here. I AM TALKING ABOUT TESTING! why has it been stopped? who needs trials for machinery that is already in use? Give us the test, and then let's worry about the next step.

Denial of testing seems good reason for a lawsuit!

Moom,

Getting the testing seems so easy. But do you want testing from someone who doesn't really know how to do it properly ? Dr Simka and Dr Zamboni and the people at BNAC know how to do the testing. But aside from Dr Dake, I don't know anyone else who I would trust to test me properly. What we need is more people trained with the doppler protocol and more sites using Dr Haacke's MS-MRI protocol. Dr Haacke is asking for sites to collaborate with him. Maybe you could ask your PCP or neuro how you could expedite getting the training and the protocol for the tests near you.

ozarkcanoer

Yes, we keep going around in circles back to the same thing as 6 months ago, we need more sites and trained people. Here we are back to the double-edged sword, lots of clamoring, little qualification to do anything about it. The noise right now pales in comparison to when the CBS piece comes out, and even MORE people will join the clamor armed with a thimbleful of information.

With little direction left on this site, the de facto source of all things CCSVI, and no "CCSVI for Dummies", the coming days are simply going to be more of the same. Then the NMSS will come out with another "more research is needed we are looking into it" statement, PWMS will flood the internet and desperately look to see "what everyone else is doing", and find out there are 3 or 4 lists they can try to get on, (if they make it that far) with hundreds if not thousands on those lists already, and not much else. They won't KNOW what an interventional radiologist is, or what the heck an MRV is, or why they need it in the first place, or even understand much more than "veins are screwed up or something like that".

Considering the hundreds and hundreds of people posting responses on Facebook, one shudders to think what adding to the frenzy is going to do. Well there's not much shuddering, but if the last couple months are any indication. How can we expect people to "approach universities and hospitals" and argue complex concepts and protocols, at the drop of a hat? Let alone MSer's with cognitive issues, short term memory loss, and fatigue? Just saying, "well I did it why can't you" is displaying an inherent lack of understanding towards our fellow MSers, and downright insulting. Maybe they CAN'T do that.
I sure do appreciate the caregivers that are in here though, advocating, fighting, pursuing, but they are the exception, not the norm. It might not seem that way, seeing that everyone HERE gets it, at a minimum, but multiplying our efforts is the ONLY way this is going to work, and having a select few with the "goods" is not good enough. It takes TIME to educate people, and patience, and persistence, not "link dumping".

"Well what we should do is..." How many times are we going to hear that?
Mark

That's meant more in a "reality check" sense than a negativity dump, just to be clear. Clear a path cause the freight train's coming through.

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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

Ana,

You really have my juices flowing now!!

As you say, the threat of a legal action might be enough to open doors for CCSVI sufferers. As a lawyer friend used to say - the best way to achieve a negotiated outcome, is to have a bloody big club behind your back!!

Phil