article "MS drug trial a fiasco"

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

Postby bretzke » Fri Jun 04, 2010 7:24 am

You know what upsets me the most?:

The MS Society was aware of these results two years into the study. They did NOTHING to alert members. They sat on the results for five more years.

An utter disgrace..

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Postby cheerleader » Fri Jun 04, 2010 7:39 am

Bob---I thought the same thing with the word scheme...no worries. It is an odd work choice (but it's British...so, you know...)

edited for the correct acronym...NHS is UK health program (I had NIH)

This paper is a summary of the seven years of research the NHS did on CRABS efficacy. They did it because they are paying top dollar for the drugs, and they wanted to make sure they worked, and to then pay accordingly. It was independent research for a long time period (not just a year at a time) and showed the progressive nature in MS (something we always talk about on here is the difficulty in knowing anything concrete because of the waxing/waning of MS symptoms.) The downward trend was worse in people on DMDs...not the same, not slightly better, but worse. That makes me stomach sick.

Jeff has stayed on copaxone (now once every 3 days) because he loves his neuro and trusts her opinion. She's a good doctor. His neuro loves him back (me not so much) because he's a great guy, a good communicator and an excellent patient. He has never read one page of research on his medication, nor has he listened to me. I don't get in his face about it, because I have NO idea what to believe. Honestly. Someone on the FB page thought this was an evil plan by the NHS to stop paying for MS drugs. I can't say she's wrong. The only thing I can take away from all of this is caveat emptor...in these recessionary times, the NHS is making sure they get their monies' worth. MS patients should do the same.

cheer
Last edited by cheerleader on Fri Jun 04, 2010 9:42 am, edited 1 time in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Lyon » Fri Jun 04, 2010 8:25 am

cheerleader wrote:Jeff has stayed on copaxone (now once every 3 days) because he loves his neuro and trusts her opinion.
It's funny that THAT very thing has been going through mind in the last couple of hours in regards to this topic.

My wife's neuro in the Tovaxin trial (female, about 50ish, trained at Georgetown by John Kurtzke) bragged that during her career she had never had anyone on Copaxone progress to the wheelchair, which four years later still rattles through my head because I've always been at a loss regarding what to make of it.

While I have great respect for her education and experience, Copaxone might actually be wondrous stuff OR a thousand other variables might come into play allowing her statement to be true, yet possibly misleading.

I don't have MS but MS still makes my brain hurt.
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Postby mshusband » Fri Jun 04, 2010 8:30 am

Copaxone is the ONE out of the CRABS that is different than the others. It's natural amino acid or something? Or it's synthetic ... I forget right now and am not going to look it up ... because the only point is it is DIFFERENT than the others.

Maybe there is something in Copaxone (they say in their ad they're not sure how it works, but it works differently than the others).

Maybe that different is exactly what's needed ... maybe it actually works in some regards. I'm not sure to tell you the truth ... but I find that to be very interesting what Lyon said too ...

I would be interested to hear about more people who stayed on Copaxone after liberation and what their thoughts are ...
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Postby Trish317 » Fri Jun 04, 2010 8:47 am

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Postby LR1234 » Fri Jun 04, 2010 9:02 am

Maybe or their own DMD's don't do much but once they are coupled with fixing the CCSVI issues (they were tested on purely immune system issues as in the EAE model) maybe they will be more efficient????
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Do you think we have enought to make a lawsuit?

Postby babiezuique » Fri Jun 04, 2010 11:20 am

I took Rebif for 7 years. And you know what? It has been like ''Vietnam war '' for me! It made me felt like a ghost, the only thing i did was: 1- sleep 2- thinking the rest of the day how i could suicide myself 3- drive me so violent 4- isolate me 5- did not have children 6- unable to have any sort of relationship 7- start ''psycho'' drugs like: paxil, then lithium, then seroquel....and so on! I lost 10 years of my life...... Who is giong to pay for this? We have to make a universal suit!


I don't fell sick, i'm very sad and i fell very vulnerable. They have power they say that we dont understand medical litterature ( that is what a neuro sais on tv here in Québec) Well.... now we understand that they were in busines...this is it!

Law suit law suit law suit law suit law suit law suit law suit law suit
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Re: Do you think we have enought to make a lawsuit?

Postby AlmostClever » Fri Jun 04, 2010 11:46 am

babiezuique wrote:
Law suit law suit law suit law suit law suit law suit law suit law suit


How about $1,000 usd for every freaking injection for starters...

Put me down for $1 million please!
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby BooBear » Fri Jun 04, 2010 11:54 am

So if we have a study in the UK that shows the drugs are not as effective as initially thought, do we believe that the FDA in the US will look at it?

What about Canada?
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Postby mangio » Fri Jun 04, 2010 11:58 am

put me down for that too,
hugh damage to my liver, kidneys and immune system,
the autoantibodies my body manufactured against the
proteins used to make the DMD's.

30pc of mser's bodies do this.

I now take LDN.
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Postby babiezuique » Fri Jun 04, 2010 12:22 pm

For becoming ritcher and ritcher they played with our health... they spoiled our live, i lost ten years... i became so big...i took 75 ponds with all this medication.

I'm serious about a universal lawsuit aginst those ''drug dealer'' .
They do this under the cover of science, the doctors lost their objectivity in all of this... We have been used! How will we get over this, can we?

1000$ for each injection! that is a goal....

Hey i am serious!
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Postby Trish317 » Fri Jun 04, 2010 12:32 pm

THIS might definitely be a class action suit. There have been many class action suits brought against drug companies. Although, the plaintiffs, individually, do not usually receive a huge award.
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Postby IHateMS » Fri Jun 04, 2010 12:44 pm

i have taken this crap for eleven years.......

stop calling them crabs, CALL THEM WHAT they are.... CRAP

:evil:
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Postby BooBear » Fri Jun 04, 2010 12:46 pm

Trish, I agree. What would make it really sweet would be proof that the pharmas overstated the efficacy of the drugs. That would be perfect for a class action- every lawyer would want in on it.

IHateMS, I couldn't agree with you more.
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Postby bretzke » Fri Jun 04, 2010 1:33 pm

Someone from England should contact the Social, Health and Family Affairs Committee of the Parliamentary Assembly of the Council of Europe and send them the link to MS drug study. They may be interested in investigating.

They recently released a report accusing drug company collusion and undue influence with members of the World Health Organization concerning the H1N1 virus scare.

http://www.washingtonpost.com/wp-dyn/content/article/2010/06/04/AR2010060403034.html

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