names

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

names

Postby 1eye » Sat Sep 11, 2010 9:07 pm

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Last edited by 1eye on Mon Sep 13, 2010 7:35 am, edited 1 time in total.
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Postby oreo » Sun Sep 12, 2010 8:27 am

I have a couple of problems with what you propose to do 1eye.

Firstly, can you (or anyone) prove beyond a reasonable doubt that the 'Liberation' treatment would have saved their lives.

Secondly, can you reasonably demonstrate that these people actually died of MS. Just because a person who dies has MS does not automatically mean they died from it. I have asked a couple of funeral directors I know rather well how often they see MS listed as the cause of death on the death certificate. The response varied bewteen rarely to never.

One of my biggest fears with this as yet unproven 'Liberation' treatment is that a couple of years down the road we may start seeing 'liberated' MS'ers dying and their death certificates will list cause of death : Intracranial venous hemorrhage (stroke). This as a direct result of applying arterial treatments (angiplasty & stents) to veins for which neither treatment was designed. I sincerely hope I am wrong but I still am concerned with the safety question.
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Postby 1eye » Sun Sep 12, 2010 12:18 pm

oreo wrote:I have a couple of problems with what you propose to do 1eye.

Firstly, can you (or anyone) prove beyond a reasonable doubt that the 'Liberation' treatment would have saved their lives.


I really don't care what problems you have, and I don't propose to do anything. Consider it done.

Please take this kind of quibbling elsewhere, and honour the dead and the survivors. This is not a court of law and the golden rule protecting the innocent from being thrown in jail does not apply to the guilty parties here. Only their own consciences can do that.

Secondly, can you reasonably demonstrate that these people actually died of MS. Just because a person who dies has MS does not automatically mean they died from it. I have asked a couple of funeral directors I know rather well how often they see MS listed as the cause of death on the death certificate. The response varied bewteen rarely to never.


I have no intention of demonstrating anything, reasonably or otherwise, to you especially on this matter. I don't much care what funeral directors do in these cases. If anyone who knows the name of someone who may not have died from CCSVI, or their doubt is more reasonable than their certainty, they are welcome, in fact encouraged, not to submit any names. I say that for your benefit only, so as not to insult anyone else's intelligence.

One of my biggest fears with this as yet unproven 'Liberation' treatment is that a couple of years down the road we may start seeing 'liberated' MS'ers dying and their death certificates will list cause of death : Intracranial venous hemorrhage (stroke). This as a direct result of applying arterial treatments (angiplasty & stents) to veins for which neither treatment was designed. I sincerely hope I am wrong but I still am concerned with the safety question.


I take great objection to this. It is the worst kind of attention-seeking, inconsiderate trolling. It makes me more angry than I believe I have a right to show publicly, in this context, and I suppose that is what was intended. Please take your "fears" elsewhere. This topic is not there for people to despoil as desired. People in this forum are not easily scared by fear-mongers, and if I were you, I would remove the whole thing. If you will, (PM me,even) I will remove my response, which I think is very conservative.

This is not intended to assuage any fears, or sway anybody's beliefs, merely to honour the fallen. Please start another topic if you feel you must discuss this somewhere.
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Postby PCakes » Sun Sep 12, 2010 1:19 pm

oreo wrote:Firstly, can you (or anyone) prove beyond a reasonable doubt that the 'Liberation' treatment would have saved their lives.


Yes, what 1eye has said and if I may add.. the point is not proof...the point is to exhaust all possibilites..!
The proof is not in the 'pudding' the proof is in the 'tasting'.. until such time, this crime of arrogance will prevail.
Give us a chance..give us a choice!!
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Postby blossom » Sun Sep 12, 2010 2:02 pm

oreo. i think in time we will hear of some that have died because they had had the procedure because it is not fool proof. but in the meantime i disagree with you saying people don't die from ms. a friend of mine died when his lungs quit working "they could not do their job" because of ms. so they list the reason for death that he died because he had bad lungs? no-he died because the ms caused this to happen. kidney failure is a common death amongst msers. the kidneys were fine until ms came along. i could go on and on with the "side effects" of ms that "does cause death". ms does cause death because of what it does to our organs. the dr.'s or whoever says ms is not the a killer is full of it. sure the name ms wont kill us but the trickle down effects sure will. i liken it to a slow stroke in a lot of ways. and, i knew a lady that the drugs she was takeing screwed her up so bad that she died. the word "ms" did not kill her but the trickle down effect sure did. there "maybe" people die from the ccsvi procedure but "for sure" if you have ms you are more likely to die from something that ms contributed to or the drugs caused someday. if someone "not with ms" needs a kidney transplant and he gets it-some live a long and productive life-and some die. some later have contracted a dissease from that transplant and they die. "but what do you tell that person" you can't get that transplant" that "could" give you life. so what happens down the line with ccsvi treatments will be no different than a lot of other things in the med. world. my opinion is that it will be a lot less complicated than a lot of stuff. so, if they have on my bedside oneday "do not resucciate"and there is a treatment that could help me as liberation has some and i am not given the chance to try it-then yes-i would feel and my family would feel very wronged to not be given the chance if that would be what i wanted. and, this is happening.

so 1-eye even though i don't have a name to send you "at this time" i don't see a problem with what you want to do. the one thing it should make us all even more aware of is that these people were not even given the chance. would it have helped? nobody has a crystal ball. but to do nothing is really sad and really wrong. this memorial i feel is not about heroes-it is in memory of the victims of a cruel disease called "ms" that caused their death that may have helped them but were not given the chance.

oreo, me, you, whoever should be allowed to an opinion-right or wrong.
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Postby Trish317 » Sun Sep 12, 2010 2:22 pm

I'm so thankful that my darling man will have a chance, on Tuesday, to find out if CCSVI is, at all, an answer to his diagnosis of PPMS. In the three years since his diagnosis, his condition has worsened.

Now we're cautiously optimistic.

My prayers and positive thoughts are with everyone fighting this insididous disease.
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Postby sbr487 » Mon Sep 13, 2010 1:33 am

1eye and other here,

Every time there is an attempt to have a decent discussion, there is always a post to derail it. The line of argument is generally the same ...

Is it really worth replying?
Does it achieve anything (given the history) except to help their cause?


They thrive on our response ... i will leave the rest for you all to decide ...
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
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Postby jimmylegs » Mon Sep 13, 2010 4:39 am

exactly, sbr.
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Postby CureOrBust » Mon Sep 13, 2010 4:43 am

1eye, I don't think its exactly what you want, but Dr Kevorkian had a HIGH percentage of MS patients (much more than half I think :? And Digitas in Europe also "help" MS patients).

I am guessing from what I have previously seen on TV, that Digitas do not take "patients" that have a treatment option, so MS patients may no longer be afforded that option if CCSVI becomes a treatment option, and hence, lives saved.

Also, see this study. Suicide and multiple sclerosis: an epidemiological investigation.http://www.ncbi.nlm.nih.gov/pmc/articles/PMC489162/
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Postby scorpion » Mon Sep 13, 2010 4:52 am

jimmylegs wrote:exactly, sbr.


I can only speak for myself but I could care less about getting a response related to my posts. The only thing I can hope for is that the one of the many lurkers who read this board will read my opinion and get something out of it. As far as Oreo's comment what did he say that is so upsetting? I do not know of ANY researcher involved with CCSVI that has EVER said the liberation procedure will save anyone's life. In fact most people have said it seems to work best for people newly diagnosed with MS and maybe not at all for people who have serious axonal damage. I hope when people read these names they do not let emotion cloud logical thinking.
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Postby 1eye » Mon Sep 13, 2010 6:57 am

CureOrBust wrote:1eye, I don't think its exactly what you want, but Dr Kevorkian had a HIGH percentage of MS patients (much more than half I think :? And Digitas in Europe also "help" MS patients).

I am guessing from what I have previously seen on TV, that Digitas do not take "patients" that have a treatment option, so MS patients may no longer be afforded that option if CCSVI becomes a treatment option, and hence, lives saved.

Also, see this study. Suicide and multiple sclerosis: an epidemiological investigation.http://www.ncbi.nlm.nih.gov/pmc/articles/PMC489162/


No it's not what I want. If you know anybody who knows of this topic and want's their name on my list, please dissuade them. Tell them to start their own list. I am beginning to think this list was a bad idea. It just brings the squirrels out of the woodwork. I take it all back. There is probably no way to do this, on this forum, anyway,
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Postby 1eye » Mon Sep 13, 2010 7:03 am

scorpion wrote:
jimmylegs wrote:exactly, sbr.


I can only speak for myself but I could care less about getting a response related to my posts. The only thing I can hope for is that the one of the many lurkers who read this board will read my opinion and get something out of it. As far as Oreo's comment what did he say that is so upsetting? I do not know of ANY researcher involved with CCSVI that has EVER said the liberation procedure will save anyone's life. In fact most people have said it seems to work best for people newly diagnosed with MS and maybe not at all for people who have serious axonal damage. I hope when people read these names they do not let emotion cloud logical thinking.


Have you no sense of decency?

At long last, have you no sense of decency?
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Postby 1eye » Mon Sep 13, 2010 7:32 am

Because I feel more ill every time I read this topic, I am afraid I will have no more to do with it. There were no names forthcoming anyway. Would you want your name associated with all this indecent twaddle after you were dead?

Please do not post any names. Sorry; see you on the hill.
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Postby scorpion » Mon Sep 13, 2010 7:42 am

1eye wrote:
scorpion wrote:
jimmylegs wrote:exactly, sbr.


I can only speak for myself but I could care less about getting a response related to my posts. The only thing I can hope for is that the one of the many lurkers who read this board will read my opinion and get something out of it. As far as Oreo's comment what did he say that is so upsetting? I do not know of ANY researcher involved with CCSVI that has EVER said the liberation procedure will save anyone's life. In fact most people have said it seems to work best for people newly diagnosed with MS and maybe not at all for people who have serious axonal damage. I hope when people read these names they do not let emotion cloud logical thinking.


Have you no sense of decency?

At long last, have you no sense of decency?


Of course do what you want 1eye but I do not think you are helping the CCSVI cause. People have argued, quite persuasively, that the liberation procedure may relieve some symptoms of MS and possibly stop it in its tracks. With all the anecdotol evidence out there I understand people making this claim although I may not buy it. Nevertheless there is a part of me that hopes these anecdotol claims are true and that there may be something to CCSVI and the venuous system theory. However to go from claims of an operation that relieves some MS symptoms to claiming the liberation procedure will save lives when people are in the final stages of MS is misleading. Time will only tell if you or I are correct in our beliefs about CCSVI(I hope you are) but I just do not feel appealing to people's emotions(which is what a list such as you propose will do) will help the CCSVI agenda.
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Postby BooBear » Mon Sep 13, 2010 11:00 am

1eye, I know what you were trying to do. It is honorable and appreciated.

As to the other comments, if someone is literally at the end of their rope, what possible harm could this safe and simple procedure really do? Out of decency and compassion, people should be offered this chance.
Three veins angioplastied.  One renewed life.  
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