article "MS drug trial a fiasco"

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

Postby Salvatore24 » Fri Jun 04, 2010 12:52 am

Shitheads......sorry, but what they have been doing over the years is wrong.
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Postby muse » Fri Jun 04, 2010 1:32 am

I just call them drug dealers & criminals.
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Arne http://www.facebook.com/pages/Venose-Mu ... 7471578700
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Postby LR1234 » Fri Jun 04, 2010 2:09 am

Idiots all of them.

I had a terrible consult with a neuro yesterday who lectured me on trials and why CCSVI is rubbish, why LDN is rubbish, Diets and omega 3's and Vit D are all rubbish and the people taking money for treatments like CCSVI should be put in Jail. (He compared all these treatments to Snake venom, HBOT, Bee sting therapy, by the way do these neuros have the same script?)

I hope that smug B*stard with all that high and mighty attitude falls off his peddlestool now he realises that what he has been peddling can possibly "hasten disease"

As he said to me "we don't know what we don't know" Well then stop being so bl**dy closed minded and realise that maybe you don't know everything about MS and give credit and respect to those patients trying to do everything they can to help themselves instead of telling them they are just wasting their time and money.

Grrrr he really wound me up!!
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Postby gibbledygook » Fri Jun 04, 2010 2:56 am

That wasn't Kapoor was it?
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Song to Pharma and Neurologists...

Postby jr5646 » Fri Jun 04, 2010 3:28 am

The WHO:

People try to put us d-down (Talkin' 'bout my LIBERATION)
Just because we get around (Talkin' 'bout my LIBERATION)
Things they do look awful c-c-cold (Talkin' 'bout my LIBERATION)
I hope I die before I get old (Talkin' 'bout my LIBERATION)

This is my LIBERATION
This is my LIBERATION, baby

Why don't you all f-fade away (Talkin' 'bout my LIBERATION)
And don't try to dig what we all s-s-say (Talkin' 'bout my LIBERATION)
I'm not trying to cause a big s-s-sensation (Talkin' 'bout my LIBERATION
I'm just talkin' 'bout my L-L-L-LIBERATION (Talkin' 'bout my LIBERATION)

This is my LIBERATION
This is my LIBERATION, baby

Why don't you all f-fade away (Talkin' 'bout my LIBERATION)
And don't try to d-dig what we all s-s-say (Talkin' 'bout my LIBERATION)
I'm not trying to cause a b-big s-s-sensation (Talkin' 'bout my LIBERATION)
I'm just talkin' 'bout my L-L-LIBERATION (Talkin' 'bout my LIBERATION)

This is my LIBERATION
This is my LIBERATION, baby

People try to put us d-down (Talkin' 'bout my LIBERATION)
Just because we g-g-get around (Talkin' 'bout my LIBERATION)
Things they do look awful c-c-cold (Talkin' 'bout my LIBERATION)
Yeah, I hope I die before I get old (Talkin' 'bout my LIBERATION)

This is my LIBERATION
This is my LIBERATION, baby
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Postby jackiejay » Fri Jun 04, 2010 3:33 am

so what do people do now?.....the concensus was to keep taking these drugs...advice from Dr. Zamboni etc.......cheerleader says her husband continues taking copaxone.....my son has been on Avonex since 2004....I've always been skeptical about it and worry that he is injecting a drug that never really had a great percentage of efficacy, but that's all there is to help yourself really....he has been doing well so then you worry if he discontinues what would happen.........that's why I am so intrigued with CCSVI...a way to get off these drugs, something that makes sense....but then everyone said you still need to take them anyways..........WTF?
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Postby BooBear » Fri Jun 04, 2010 4:09 am

Forgive my language, but son of a bitch.

I have been on Avonex since 2004 with no slowing of disease progression.
Amazing that everyone says these drugs are "proven" to slow disease progression. Not so much!

I do believe that there are drugs out there that can help us post-liberation, though they may not be any of the CRABS. There are iron-chelating drugs, like minocycline, that also help to curb inflammation. That may be the way to go.

Thanks for posting this article, Cheer. I don't even know what else to say.
Three veins angioplastied.  One renewed life.  
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Postby jackiejay » Fri Jun 04, 2010 4:16 am

will any of the neuros even hear about this info?.......how do they spin this?
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Postby Motiak » Fri Jun 04, 2010 4:24 am

I wonder if these findings are related to http://ms.about.com/b/2010/03/30/interf ... ith-ms.htm

It doesn't really speak for copaxone but it makes sense to me that some people actively doing worse with the current DMDs could lead to what this study is saying.
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Postby LR1234 » Fri Jun 04, 2010 4:27 am

No Alex, wasn't Kapoor. he is actually a really good guy compared to this neuro!! I would love to name and shame him but he will know its me!
He is very matey with Alistair Compston (so he boasted) and he has done research into MS for over 30 years so he knows it all and I know nothing.
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Postby jackiejay » Fri Jun 04, 2010 4:28 am

yeah and some people do fine without any drugs at all
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Postby Daisy3 » Fri Jun 04, 2010 4:49 am

LR1234 wrote:Idiots all of them.

I had a terrible consult with a neuro yesterday who lectured me on trials and why CCSVI is rubbish, why LDN is rubbish, Diets and omega 3's and Vit D are all rubbish and the people taking money for treatments like CCSVI should be put in Jail. (He compared all these treatments to Snake venom, HBOT, Bee sting therapy, by the way do these neuros have the same script?)

I hope that smug B*stard with all that high and mighty attitude falls off his peddlestool now he realises that what he has been peddling can possibly "hasten disease"

As he said to me "we don't know what we don't know" Well then stop being so bl**dy closed minded and realise that maybe you don't know everything about MS and give credit and respect to those patients trying to do everything they can to help themselves instead of telling them they are just wasting their time and money.

Grrrr he really wound me up!!



Your in London like me...can you pm me his name?

We had the same convo with our Neuro the first time I brought it up!
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Postby Lyon » Fri Jun 04, 2010 5:16 am

Thanks for the link to the originating article cheer http://www.bmj.com/cgi/content/full/340/jun03_1/c1672 because after reading that it's almost unnecessary to read the articles taken from it.

I'm the last person who would stick up for the crabs. Even though we have health insurance to pay for them, my wife was only on Rebif for a month or so until it started buggering her liver. She hasn't been on anything for her MS (except the Tovaxin IIb) since.

Still, it's hard to take the subjectivity of a writer/article seriously when he uses the word "scheme" more often than "the" or "a".

His credentials aren't obvious so James Raftery may or may not know his "stuff" and in the end his opinions may or may not be correct, but his writing style make it seem as if walked away from a pissing match with the pharmas moments before writing the article.

Most sensible people follow the rule of "if in doubt, throw it out" when reading articles so unprofessionally done that the writer has found it thoroughly impossible to separate opinion from objectivity..........basically Raftery chases away anyone interested in the facts by his constant and unending use of the word "scheme" among other things.

Obviously anyone is free to consider the value of the article what they will but, considering the recent and complete villainisation of Freedman for the use (taken out of context??) of the word "scam" it seems kind of ludicrous that in this case it's completely overlooked and seemingly considered to be open minded and accurate of this guy to continuously use the word "scheme".
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Postby mose » Fri Jun 04, 2010 5:24 am

Lyon wrote:Still, it's hard to take the subjectivity of a writer/article seriously when he uses the word "scheme" more often than "the" or "a".


Lyon wrote:basically Raftery chases away anyone interested in the facts by his constant and unending use of the word "scheme" among other things.


Lyon wrote:it seems kind of ludicrous that in this case it's completely overlooked and seemingly considered to be open minded and accurate of this guy to continuously use the word "scheme".


The UK gov't program is officially titled "Pharmaceutical Price Regulation Scheme"(PPRS). The word 'scheme' isn't the author's, it's the actual, official government name of the program itself. His use of the word is merely referring to that program. I don't see how that can be viewed as inappropriate.

Your assumption of bias via word choice appears to be unsupported.

Here is a gov't website with information: http://webarchive.nationalarchives.gov. ... /index.htm
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Postby Lyon » Fri Jun 04, 2010 5:36 am

:oops: With that being the case, you're right mose.

I'd kind of like to blame this on the Brits for mis-using the word "scheme" that way, but then again the "English" language is theirs and we in America just borrow it :wink:

Even though being on record multiple times for stating that the CRAB makers haven't been able to convincingly distinguish their results from placebo, related studies over the years have gone back and forth and some have (modestly, although I can't testify how objectively) gone in favor of the crabs in recent years.

I'm personally not convinced that the crabs do ANYTHING to benefit someone with MS....short of making sufferers feel that they have some control over their own future and maybe to convince themselves that they have endured the necessary cost and pain needed to experience benefit (placebo?...medicine HAS to taste bad to work). But it might also be considered that, due to the cost of the crabs, the British healthcare system has some serious incentive to slant the "facts" away from the crabs.

Whereas, due to the costs, the healthcare system would like clear and obvious evidence of the efficacy of the crabs, to someone with MS and their loved ones, even a 5% benefit justifies a "damn the cost" attitude, which probably where the pressure came from causing the health service to pay for the Crabs in the first place.
Last edited by Lyon on Fri Jun 04, 2010 6:27 am, edited 1 time in total.
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