CRABs dont slow EDSS progression - 3 studies

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Postby cheerleader » Wed Jul 14, 2010 4:01 pm

Hi Perkele--
Yes you're right, glutamate is another bio-marker of gray matter damage. I should not have said "only documented physical correlation." I should have instead written that white matter lesions do not provide a decisive link to level of disability.

The larger point is that it's not about white matter lesions--which is what the CRABs address.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Meira » Wed Jul 14, 2010 4:06 pm

swynjones wrote:Yes I do work in the drug industry. But the company I work for is not active in MS research. I work in the cancer research area and I know how hard everyone arounds me works to find that drug target that is going to make a different to patients and improve cancer survival rates. I am 100% certain therefore that it is the same at those drug companies who do work in the MS area.


... the death rate for cancer, adjusted for the size and age of the population, dropped only 5 percent from 1950 to 2005 ...
http://www.nytimes.com/2009/04/24/healt ... .html?_r=1
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Postby concerned » Wed Jul 14, 2010 4:18 pm

It doesn't mean people aren't trying. Alot of this stuff is new. You can't expect scientists to know everything or be able to figure everything out, but I'd imagine at least some of them have their hearts in the right place and are really trying to help people.
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Re: CRABs dont slow EDSS progression - 3 studies

Postby NHE » Thu Jul 15, 2010 1:45 am

swynjones wrote:I will see if I can dig out some EDSS progression plots from some papers showing efefctiveness of different CRABS. there is stuff out there that has been peer-reviewed, albeit from smaller patient numbers.


The following data plots are from Avonex's Doctor's Prescribing Information. The studies were only done for 2 years. I would like to see data for 5 and 10 years. There is some effect on EDSS and disability progression but it's not terribly impressive.

Image

Image


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Postby swynjones » Thu Jul 15, 2010 3:09 am

Meira wrote:
swynjones wrote:Yes I do work in the drug industry. But the company I work for is not active in MS research. I work in the cancer research area and I know how hard everyone arounds me works to find that drug target that is going to make a different to patients and improve cancer survival rates. I am 100% certain therefore that it is the same at those drug companies who do work in the MS area.


... the death rate for cancer, adjusted for the size and age of the population, dropped only 5 percent from 1950 to 2005 ...
http://www.nytimes.com/2009/04/24/healt ... .html?_r=1


I did say that pharma industry had disapointed.

Although 2 points.

A fall in 5% probably equates to several million people. is that not a success?

Also this article is taking all types of cancers, whcih are like different diseases. Some cancers have become very treatable through combination of early detection, drug treatment and surgery. Other cancers have become more prevalent cos people are livign longer.
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Postby ScutFarkus » Sun Jul 18, 2010 10:28 am

swynjones wrote:Embry makes some valid points here regarding the need for an open and thorough look at CCSVI.

But ultimately this article is a little bit hypocritical because he criticises the CRABS due to 3 studies which have not demonstrated clear efficacy in reducing disease progression.

Yes I do work in the drug industry. But the company I work for is not active in MS research. I work in the cancer research area and I know how hard everyone arounds me works to find that drug target that is going to make a different to patients and improve cancer survival rates. I am 100% certain therefore that it is the same at those drug companies who do work in the MS area.

MY wife has MS, hence my interest in reading this forum and following MS research.


Hello swynjones, and welcome to the forum! You're a brave man to admit drug industry ties; you'd probably win more friends by saying that you hate kittens and think Wall Street bankers should get larger bonuses. :) But I hope you'll hang around and contribute more wisdom from someone on the "inside." I agree with your comments on the article, and about the existence of drug industry workers whose hearts are in the right place. Thanks for bringing some balance.

There is a similar thread in the CCSVI sub-forum about the Embry article, in which many of the flaws in his reasoning are enumerated. The big one, which I see repeated many times in other posts, is to totally ignore the primary claim of the CRABs, e.g. reduction in relapse rate, and instead focus entirely on disease progression. For Embry to claim "the CRABS are really no different than snake oil" is irresponsible and just plain false.

I'll also point out that Embry's criticism of the first study (Veugelers et al, 2009) isn't mathematically valid: overlapping confidence intervals do not mean there is no statistically significant difference. So again, Embry is calling out someone else for behavior he's actually guilty of doing himself (e.g. misunderstanding statistics in this case).

/Scut
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Postby jgkarob » Sun Jul 18, 2010 12:01 pm

And he's been writing and saying the same anti-drug views for as long as I can remember and I was diagnosed in 2000.
In my case, I feel the issue is simple.
Relapses=lesions=symptoms=trouble.
But that's just my body and my view.

I had an MRI last year, the first since 2001 and I had 4 more lesions and I'd had 4 relapses in those 8 years.
In my view, luck, drugs and quite a rigorous exercise program have kept me mobile. LDN has helped with MS symptoms (bladder function/spasticity) and beta-interferon has kept the relapse rate low.

A Primal diet (a similar diet to the Best Bet Diet) has also helped.

MS is not a simple disease. It's idiosyncratic, frustrating and finding a way to keep well with RRMS takes time.
I feel that I haven't progressed since diagnosis.
I've been really ill, hardly able to walk, had dreadful cognitive problems and crippiling fatigue - but I've been lucky enough to recover.

I do wish that Ashton Embry would just have the humility to admit that dealing with MS is damn complicated.
Maybe if he actually had MS, he'd appreciate this?
Who knows.
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Postby Ptwo » Sat Jul 24, 2010 4:55 am

Frank wrote:The flawed point is that the study population has significantly decreased.
So it seems obvious to me that only the people that did very well on Copaxone, (or what seems more likely to me) people who have a naturally benign course stayed in the trial, while people with less benefit dropped out of the trial to switch to maybe an other one of the CRABs.


Interestingly I've known a couple people who have stopped taking Copaxone who were doing very well on it. The train of thought goes that they would be doing well without it so they can quit and all will be well.

For me, I've done well on Copax over the last 9 years. After 5 years on disability I've been back working full time as a carpenter the last 4. This summer even working outside in the sun with temps in the 90's!

Is it the copax? Or can I quit and all will be well. With all the site reaction bumps and bruises it would be tempting to go off the sauce but, I don't dare.
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Postby L » Sat Jul 24, 2010 5:38 pm

concerned wrote:It doesn't mean people aren't trying. Alot of this stuff is new. You can't expect scientists to know everything or be able to figure everything out, but I'd imagine at least some of them have their hearts in the right place and are really trying to help people.


There aren't many independent researchers. http://bostonreview.net/BR35.3/angell.php

Drug companies aren't interested in funding drugs which cure and repair. A one of treatment is not worth the research costs.

They want a pill that's a little better than the current treatments. If you look at the drug pipeline thread here, almost every single drug being researched is an modulator of the immune system. They need something that has to be taken continually.

Research and development should not be in the hands of these massive companies. Academic establishments and the pharmaceutical industry should be kept at arms length. I think that would be much more healthy, literally.
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