This Is MS Multiple Sclerosis Community: Knowledge & Support

It's difficult to obtain rigourous and effective scientific research about CCSVI . Much information has been published about multiple conflicts of interest and actions contrary to the interests of patients.

Does anyone think to legal action to enforce our rights? In the US or elsewhere...

Hi Jean,
Here in Canada we have a group that set a legal challenge in the top courts.
I don't know where it's at at thos point with the slow legal grinding wheels.
Check their site.
http://www.angioplastyforall.com/

Take Care

Norm

_________________
In a perfect world, my Neuro would like to be a vascular specialist.
'92 diag RR - '05 SP

@ britanyspores : I couldn't understand clearly what you wrote for my english is not so fluent !! Who are you and what do you want to do ?

@ Norm : thank you for the link, i'll check it soon !

Jean
My English is pretty good and I didn't follow that one either.

Back to your original question; Who do you want to sue? What would be the basis of your suit?

Hi David !

The pharma industry doesn't serve patients interests, and corrupt scientific research. Many treatment are dangerous, don't help patients, and are expensive. Doctors themselves prefer "working" for the parma industry rather than patients care. False information is given to patients. In France, there have recently been a huge scandal about Médiator, a treatment that causes several death, was ineffective but registered by regulation authorities, and patients were advised to take these pills. We all know such stories. I think our fight for good research about MS, involves legal actions. Here in france, we are several patients looking for ways to improve our health condition, with a few success. I believe we should ask help from layers to protect our rights and take an active part in our health issues.

Data supporting what I write are available on the internet...many people know there's something wrong with big parma, governments,scientific research, and patients. In the US, you can use "class actions" for legal actions, I wonder why I've never heared about legal actions in the US to protect patients rights....

I'm in. My human rights are being violated. ( Stuck in Canada, much to my misfortune)

It always amazes me what humans can do for others, but it is also a lot of money to be fighting against, and I think deep pockets buy a lot of lawyers services. A couple of years ago I was in contact with human rights lawyers and class action lawyers, one who was international. None were interested.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Hi Gardenia and 1eye !

It is now 20 years since I was diagnosed. I have always looked for informations about MS research on the net, I tryed many things to escape this disease.
What is the more difficult is not MS, it is to understand that nothing is done to help patients (eventhough good doctors exist).

Almost 3 years have passed since I first heard about CCSVI. What has been done so far ? Here in France, we don't know neither the best way to be diagnosed for CCSVI, nor the way to be treated.
In Canada, shamefull behavour from MS Societies, CIHR, Politics...amazed us worldwide. Let alone FDA decision to stem CCSVI research, while allowing fatal treatment like Tysabri or Fingolimod for "routine" therapy.

I appreciated Joan, Cece, Dr Sclafani, Dr Hubbard, Kirsty Duncan and many other people make CCSVI story still alive.

But what are we waiting for to make our rights beeing respected ???
Shall we go on taking ineffective and potentialy fatal medicines ? Shall we go on close our mouth and dying ??
Patients need legal actions to be respected.

i believe 1eye is right

I think another important question for those of us who have been damaged by CCSVI treatment (and there are more than a few) is whether legal action is appropriate to help compensate for damage that has occurred as a result of treatment.

Yet another perspective ...YAWN... (oh, excuse me).

--Tracy

_________________
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user

This would be a good issue to get out of the way. If there is any remotely imaginable profit to be gained off of suing interventional radiologists, working for fully informed patients, there will likely be lawyers coming out of the woodwork. Why should it not be the people who have helped "MS" patients most in the last 150 years who should pay? No neurologist or drug vendor is their brother's keeper. It' not in *their* job description to know good ways to fix veins.

I will, if possible, be donating my brains, and my veins, to research, and I hope better ways to treat CCSVI can be found. No matter what happens to me, you will not see me suing any IRs.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Hi Questor ! I have been diagnosed for CCSVI, but don't want to be treated until diagnose and treatment of CCSVI are well established. The way things are going, i may wait for some time ....

Some hospital or doctors have offered and offers the "liberation treatment". Anyone has to be carefull with such proposals.
Thank you for sharing your story, it's sad you and other patients were not carefully treated.

Thus, this was your decision to get treated , this was a personnal choice, eventhough this is still early times for CCSVI...
I agree with 1eye, how can you blame an IR when you were the one who took the decision to have the "liberation treatment"?

What I am about to say has nothing to do with my genuine sympathy for those who have experienced negative outcomes from the procedure.

Of course it's easy for someone like me to stand up and be for the physicians side, given my positive outcome. However, any bullshit like this is likely to scare some of the pioneers doing work on this back into pure research rather than performing the treatment. I signed a number of forms of consent, and I am almost certain every patient receiving the treatment did/does also. It's a new and unproven procedure. Full stop. Caveat emptor, baby. Unless it's gross negligence on the part of the treating physician, then this kind of american style litigation talk is just disgusting to me in this case. Your mileage may vary.

tilt

_________________
...and I for one, welcome our new Neurologist overlords!

My before and after CCSVI treatment video http://www.youtube.com/watch?v=RhosV4_DvWw
Visit my Lego Amusement Rides website http://www.brickshelf.com/cgi-bin/gallery.cgi?m=Bolliger

i was a quadriplegic when i went and still am. i thought i could die before i got it done . in fact i told a friend i wondered if i would make it.

and i followed dr. phil's recommendation to "pray to god but row for the shore"

How could I disagree with someone who is agreeing with me? Though I agree with the sentiment that yes, we all should have treatment available, and yes, in Canada, it should be "free", and yes, indeed, we might have a case against the makers of Rebif, maybe against Pfizer, perhaps others, there could be reason for dissatisfaction.

Just consider this: if, say, you, yes, I mean you, were in the position that you had no way to fund any further treatments. The kicker is that whatever was done to you in the procedure, it has stopped working. It is again progressing, and your symptoms are getting worse. What's more, you are older, you are likely not to survive long enough to do anything about it. Do you regret anything you have done? Do you wish you had never taken the chance? Was it at all worth it?

Consider that while you are unable to afford the procedure again, neither are you able to afford the legal bill to get any compensation for all this. Or maybe you have had several procedures, none of which got you back to where you were after the first one. You are too scared to risk any further treatments. All you have is the knowledge you were part of the solution. not part of the problem.

See, one thing I have learned on these trips around the sun, is, as long as you are on this bus, things can get better. But they can also always get worse. Caveat emptor indeed. That's what Leonard Cohen said, in soap on the wall, as he sat in his bathtub. But don't let idle talk about lawsuits against those IRs who were helping more and more people every day, make you think the is any legal merit to the argument that us poor unfortunate "MS" patients were waylaid and taken advantage of by those healers.

The truth, as usual, is probably somewhere in between.

But the "MSS"? Who are they? Where does the money flow in that organization? Where does it come from?

I think I'll ride in a Team, on my recumbent tricycle, in this years' bike-athon. My sponsors will contribute to a fund to get my next procedure. The name of my team? The Deli-gators. We will all be card-carrying members whose votes will count. We will all delegate those votes.

Imagine. The Italian MS Society suing the Italian CSVVI folks. I wonder why?

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience