Why aren't they thought well of?

One reason is because he is the researcher who brought forth the excess glutamate as the key problem in ALS theory to ALS research and the one who brought us Rilutek. Unfortunately as the evidence has weakened that glutamate is the key problem in ALS (Just ask ALS-TDI researchers their opinion on the Glutamate theory) Dr. Rothstein and the Packard Center stubbornly have plowed ahead for years trying to prove this very shaky theory. It seems they are very slow to adapt and stubborn about changing the course of their research when it becomes necessary. Given Dr. Rothstein's track record I wish project ALS would have seen fit to spend this funding elsewhere (like with ALS-TDI for example). I hope this money will not be wasted.

My husband was diagnosed 2.5 years ago, has been on Rilutek from the beginning, and has had a fairly slow progression. I don't know if that would have happened anyway, but it's possible that Rilutek has been helpful.

If I had to bet,I would say your husband is progressing at HIS own rate.I would take that money and buy something I wanted..Many studies , I believe even ALSTDI ran a trial on it, and didn't show any noticeable efficacy..Even JHU trial only extended [they claim ] life by 3 months..If you THINK something helps, placebo affect has proven it does..For a while..7 yrs PALS..experience..
I would never advise anyone to take it or not, but I know very few PALS who do..Just my opinion...Ron

I wish all of them was in collaboration , Mike..Then they would all be on the same page working for a common goal..CUREING US..
Rothstein should not lead the group above , and I'll make you a bet he is.. Ron

I'd bet you what you are seeing in the FRS is nothing to do with Rilutek , but it's the PALS own progression keeping the FRS the same or slower decline..
How would you know?
You wouldn't..Cause there's no way to tell, and all trials run showed nothing but a three months life extension..All noise..My opinion..Ron

I thought the Estess sisters was tied in with the Packard Center, Rob

Its funny, when the whole lithium thing was happening. Rothstien put out a press release taking credit for lithium/rilutec helping Pals in Italy. A few months later that press release mysteriously disappeared, even though they always keep past releases.

You all need to learn how to use that Search button! The offending article was posted on this forum.

http://www.als.net/forum/default.aspx?g=posts&t=45783

FROM THE DIRECTOR
Exciting New Human ALS Trial: Lithium and Riluzole

Recently, a study was published in the Proceedings of the National Academy of Science, by an Italian group of scientists and clinicians examining the ability of lithium to increase the neuroprotective actions of riluzole in ALS mice and patients.

This study was highly significant in that it showed, for the first time, a marked potentiation of the actions of riluzole in ALS patients. It showed that riluzole and lithium - combined - were far more effective than riluzole alone at increasing survival and slowing disease in ALS patients.

Although riluzole has been shown in multiple, large, independent human trials to be effective in ALS, its actions to slow disease are quite small. Lithium, a salt, has many, many actions in the nervous system but is best known for its ability to treat a very different brain disease: manic depression.

The combination of both lithium and riluzole in ALS patients appeared to keep patient alive longer and slow loss of breathing capacity and other clinical measures of disease progression.

To those of us who work very hard to translate science into effective therapeutics and to those who diagnose and manage ALS patients, this new study is extremely exciting.

It shows that drug combinations, when studied carefully, might actually very significantly slow down ALS and extend the lives of patients.

The actual study by the Italians was quite small. And the history of most modern medical research has taught us that small studies with patients need to be replicated with larger studies. All too often results of small studies are not reproduced when better and larger studies are carried out.

For this reason Packard Center clinicians and scientists are in the process of working with major ALS non-profits, the government, and European colleagues to move as quickly as possible to replicate this very small study with a larger one.

Details of the study will be reported as soon as we know more.

Does that mean patients should wait until a larger study of lithium and riluzole is complete before they consider taking the drug? Lithium is a drug very widely used for psychiatric disorders like manic depression. Its use must be monitored by physicians with appropriate physical exams and blood tests.

All patients interested in taking lithium plus riluzole should discuss this with their local physicians and/or neurologists.

The community of scientists and patients have all too often been disappointed with outcomes of ALS clinical trials, especially after we all get excited by experimental mouse data. But human trials provide the only data that really count.

We deeply hope that this novel combination of riluzole and lithium will turn out to be the “real thing” and we are collectively working hard to make that happen.



Jeffrey D. Rothstein MD, PhD
Professor of Neurology and Neuroscience
Director, Robert Packard Center for ALS Research

Nice work Wayne.

I would also point people to the Internet Wayback Machine at http://www.archive.org.

The Internet never forgets.

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Le meilleur vin avec les meilleurs amis