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Research and Longevity
I get to wondering sometimes why all the clinical trials and studies concentrate on PALS with less than 2 years of symptoms. Yes, I do realize that the majority of people will be gone in 3-5 years, and for at least a decade (or more) research has been dedicated toward finding a cure in the early stages.
What I don’t get is why nobody is studying the large population of PALS who live over 10 years. They claim 10% (+/-) of us will live past that 10 year mark. Figure if they find 5,000 new cases per year in the US, 500 of them will survive more than 10 years. In 10 years, 5000 PALS are still alive. In 15, and 20 years, those number will whittle down, but new PALS will replace them year after year. Why aren’t they studying why so many live so long instead of rapidly leaving us? Comparing the differences in those who live much longer is a gold mine that may very well lead to the actual cure of ALS. What is the difference in progression, why do some people progress so quickly while other barely progress for years?
The lack of studies on this topic has me baffled because its not like they have no one to poke and prod and analyze. Any answers?
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2 Replies
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Hi John,
I think that’s a smart idea, but clinical studies are not studying patients, they are studying drugs. For you it might seems the same thing but it is not.
For one thing, scientists can download the PRO-ACT database and study the difference between pALS that survived and those who didn’t. Nothing very smart emerged from that, basically ALS progression can be accurately predicted from weight, age and a few other seemingly unimportant parameters.
Let’s talk of something paradoxical in the way we do science.
From a philosophical point of view, the concept of “hard sciences” is questionable because they do not study our empiric world, but instead study concepts that are entirely born in our mind. A good example is physics, it tells of things that happen on infinitely small or large scales, or in the beginning of time, but it can’t explain why planes fly or the turbulence around a bridge stack. The HLC does not measure new particles, it tries to detect improbable events and infer the existence of new concepts. etc, etc … This is because “hard science” is mainly about thinking about our concepts born out of our mind. An alien species would not understand much of our physics or mathematics.
Medicine have a different approach, it knows that reality is complex and not approachable by theoretical thinking. Medicine is pragmatic, it is interested in results, not in concepts.
Biogen’s strategy might be interesting to study. Some years ago they were looking at drugs that hopefully could heal all pALS. Those drugs were chosen because they have some properties like acting against ROS, or enhancing misfolded proteins degradation. An old example of those kind of drugs is Riluzole, a new example is Arimoclomol.
But at some time they felt they would never succeed with this approach.
Then they apparently decided to change their strategy to explore tiny niches of the ALS disease where there is a clearer mechanism of action. Hence the drugs or therapies aiming at SOD1, C9orf72, ATXN2, etc..
Indeed this leaves out 90% of pALS untreated, but in the mean time if Biogen’s scientists have some success they will learn more about the disease and will be able to design more, efficacious drugs for most pALS.(I am not affiliated in anyway with any pharmaceutical company)
JP
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Hello Jean-Pierre,
I get it. Its like saying they cannot see the forest through the tree’s. Common shortsightedness problem I think. I also think that they could put as much study into the difference between short and long survival PALS and figure out what causes longevity. If they figure that out, they can probably double or triple the life expectancy of all of us.
Bookworms get hooked on the empirical basis of science, and sometimes miss the common sense in it all.
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