81–90 of 141 posts
Also: https://en.wikipedia.org/wiki/Flowers_for_Algernon#Synopsis
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The thing about clinical trials, is there is a minimum time it takes to run one. You can up concurrency but it only gets you so far - you really need to know the long term impact before you can iterate much.
So, that wouldn’t be a good way to address basic medical research for some sort of Manhattan project. To make great progress over a decade, we’d need to do something else to advance medical science.
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My partner suffers from relapsing-remitting MS and it's horrible. Out of nowhere, body and brain half-quit working. Needs wheelchair, constantly confused. And then suddenly one day it stops. I like to hope we'll figure this out during our lifetime.
Check out Wahls Protocol.
> Metformin seems to work by rejuvenating stem cells in the central nervous system, which then go on to become myelin-producing cells called oligodendrocytes. These churn out fresh myelin to replace that destroyed by MS I have small fibre neuropathy, which has left me with constant pain. There are basically no treatments available beyond pain control, except for maybe IVIG treatments (there have been some papers show…
I know this may sound hard to believe, but in some cases it's possible to get insurance to cover IVIG for aaSFPN in the United States, even though it's not yet FDA approved for that condition: https://www.karger.com/Article/Fulltext/498858#scrollNav-3-6
Otherwise, IVIG for SFPN is quite expensive just about anywhere.
> Metformin seems to work by rejuvenating stem cells in the central nervous system, which then go on to become myelin-producing cells called oligodendrocytes. These churn out fresh myelin to replace that destroyed by MS I have small fibre neuropathy, which has left me with constant pain. There are basically no treatments available beyond pain control, except for maybe IVIG treatments (there have been some papers show…
My mom has SFSN and my brother has CIDP. From what I've seen IV IG is the only treatment for this kind of condition currently available and, even then, it's not a permanent fix. My brother has had it several times and it saved his life but the side effects are horrible. There are some interesting advancements happening in the States using stem cell but it's still very early days and even more expensive than IV IG. Ju…
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One thing I’ve always wondered is: how many drugs have we rejected like this, which were actually bimodal in their safety profile, the way many drugs are bimodal (or polymodal) in their effect profile. I.e., that there’s some inherent difference between the people the drug harms, and the people it doesn’t; and if you can identify that difference, and test for it, then you can safely give the drug to only the people i…
> We only seem to do it when a drug is initially declared as safe; introduced into the market; and then we find that it has side-effects that clearly correspond to some subpopulation. This exact thing happened with another MS drug: natalizumab[0]. It was originally approved in 2004, but later withdrawn in 2005 due to some cases of Progressive multifocal leukoencephalopathy (PML), an opportunistic brain infection that…
She moved to Gylenia and so far so good (or at least as good as someone can be with MS).
When she was diagnosed 12 years ago it was the beginning of "modern" MS treatments. 10 years back and it would have been disastrous. In 10 years there may be wonderful advancements.
I feel that 100-12 years ago was a true milestone.
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I see your point as I thought it for a second as well. At the same time, MS is quite a well-known acronym for Multiple Sclerosis even among lay people (anecdata: I am a layperson and know no one who has MS). I know this is a tech/curiosity forum, and that it might be confusing for a second, but I feel a bit "Black Mirrorred" if the acronym MS fully belongs to Microsoft on Hacker News. I'm against giving them that pow…
Just to nitpick, if you're not a native english speaker MS may not even mean multiple sclerosis to you. In my language the acronym would be "SM". Later edit: and I've never seen the name of the disease acronymed, it's always been in full.
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The thing about clinical trials, is there is a minimum time it takes to run one. You can up concurrency but it only gets you so far - you really need to know the long term impact before you can iterate much.
So, that wouldn’t be a good way to address basic medical research for some sort of Manhattan project. To make great progress over a decade, we’d need to do something else to advance medical science.
Just a decade ago, Hepatitis C wasn't curable in nearly 100% of patients (in 12 weeks with limited side effects!). It isn't great news cycle content to focus on rehashing the great achievements we have recently made.
It's heartbreaking to have such a methodical approach for sufferers now of course.
It's interesting that this drug is a Vitamin A derivative. The structure is very close to another popular drug, Isotretinoin (Accutane), with similar side effects. I imagine Accutane probably doesn't have this effect or we'd have caught it, but how wild would it have been if acne medication also ended up being the cure to MS.