This Is MS Multiple Sclerosis Community: Knowledge & Support

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
dual stents placed 5/09
CCSVI in MS

... 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

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.

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.






NHE

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.

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

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.

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.

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.