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MS treatment a step closer after drug shown to repair nerve coating

theguardian.com

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Re: MS treatment a step closer after drug shown to repair nerve coating

#41

Post by neltnerb »

doctor_eval wrote: post #15
shakna wrote: post #9

Earlier quoted context omitted.

> They state very bluntly that MS is an autoimmune disease... when did this become clear to mainstream science? A while. The primary symptom of MS, the demylination, is caused by the immune system attacking the myelin. The _why_ of the immune system's attack is still unknown at this point in time, but that it _does_ has been known since at least 1965, with Schumacher's criteria.

I don’t think it’s that settled at all, certainly not in 1965. Prineas in 2001 showed that MS progression may occur in the absence of immune cells and inflammation, for example [0], and people have complained of progression even when taking extremely strong immunosuppressants. While involvement of the immune system seems likely, and certainly most treatments target the immune system, I don’t think causality has been…

MS is a catch all. Multiple causes can result in demyelination even if the mechanism is the immune system. You have MS if you have demyelination products detectable in your spinal fluid and have lesions on the spinal cord. Whether it's a genetic, environmental, or some other underlying condition clearly varies, for instance the version that I have is almost certainly genetic because of family history but plenty of other people get it with no family history.

But I think people are pretty sure that certain B cells are the easiest to interrupt culprit, my current medication literally just kills a specific B cell and that treatment last six months. Take from that what you will.

Re: MS treatment a step closer after drug shown to repair nerve coating

#42

Post by neltnerb »

darkerside wrote: post #24
doctor_eval wrote: post #15

Earlier quoted context omitted.

I don’t think it’s that settled at all, certainly not in 1965. Prineas in 2001 showed that MS progression may occur in the absence of immune cells and inflammation, for example [0], and people have complained of progression even when taking extremely strong immunosuppressants. While involvement of the immune system seems likely, and certainly most treatments target the immune system, I don’t think causality has been…

I wonder how often science gets derailed simply because people are in the habit of expecting a single answer to their questions. We know that car accidents cause lacerations, although there are plenty of cases that happen in the absence of car accidents. Isn't it possible that MS is a symptom with multiple possible causes, any of which could set off a vicious cycle of nerve degeneration?

The scientists don't get derailed, but I get too many forwarded articles with silver bullets. One of my friends suggested intentionally getting stung by bees. This is magical thinking for a complex illness.

On the other hand, tecfidera had as the active ingredient a chemical I can buy from alfa aesar for $22 a liter. There's a lot of things that no one has studied yet I guess, for better and worse.

Re: MS treatment a step closer after drug shown to repair nerve coating

#43

Post by loceng »

cpncrunch wrote: post #38
loceng wrote: post #34

Emcell in the Ukraine has been offering fetal stem cells to treat MS and other "incurable" diseases for 25 years now; if treatment early enough then can stop progression and regression (undoing the damage) if not too far progressed. Documentary on Emcell on YouTube: https://youtu.be/gYRcmDySFyE The producer is working on another documentary as part of research Emcell is doing on treating infertility - via injecting c…

Its a scam. There is no evidence for any of this. Why are you shilling it here?

Maybe you should provide evidence if it's a scam - countering their research, etc - e.g. Finding legitimate research from researchers who have used same process and fetal stem cells but couldn't reproduce the results; unfortunately you'll be hard pressed to find that research in part because very few places are doing research with fetal stem cells due to local laws due to religious-political stigma associated with fetal stem cells.

Obviously it's easy to label something a scam if you've not actually looked into the details and because "it sounds too good to be true."

Maybe watch some of the videos to see qualitative data from people treated to at least see that part of it if you're not going to dig deep into their research.

Re: MS treatment a step closer after drug shown to repair nerve coating

#44

Post by cpncrunch »

loceng wrote: post #43
cpncrunch wrote: post #38

Earlier quoted context omitted.

Its a scam. There is no evidence for any of this. Why are you shilling it here?

Maybe you should provide evidence if it's a scam - countering their research, etc - e.g. Finding legitimate research from researchers who have used same process and fetal stem cells but couldn't reproduce the results; unfortunately you'll be hard pressed to find that research in part because very few places are doing research with fetal stem cells due to local laws due to religious-political stigma associated with fe…

There is no research showing that stem cells are effective for these conditions. That's why it's a scam.

Re: MS treatment a step closer after drug shown to repair nerve coating

#45

Post by loceng »

cpncrunch wrote: post #44
loceng wrote: post #43

Earlier quoted context omitted.

Maybe you should provide evidence if it's a scam - countering their research, etc - e.g. Finding legitimate research from researchers who have used same process and fetal stem cells but couldn't reproduce the results; unfortunately you'll be hard pressed to find that research in part because very few places are doing research with fetal stem cells due to local laws due to religious-political stigma associated with fe…

There is no research showing that stem cells are effective for these conditions. That's why it's a scam.

I just pointed you to a clinic in the Ukraine who 30 years ago initially did 5 years research before clinically offering fetal stem cell treatments for 25 years - where their research, and I'd recommend you read through their site + you can email to ask them for whatever evidence or 3rd party research by others they could point you to to satisfy you.

Edit to add: or even better for actual experiential learning - find someone with MS who's searching for non-harmful solutions and have them do it, be close to them before to know their quality of life intimately, perhaps go with them for treatment, and then be with them after closely to see how/if they have improvements that you can see + that they report.

I'm guessing you didn't watch the documentary on YouTube yet either - otherwise that's some amazing acting by patients and their local doctors. They have other videos on their site as well.

Re: MS treatment a step closer after drug shown to repair nerve coating

#46

Post by davidkuhta »

nottorp wrote: post #8

Please edit the title to fully spell out Multiple Sclerosis. At first I thought what does Microsoft have to do with nerve coatings?

You didn't hear about the recent acquisition? This is to support their new biotech program: "Pool at Bethesda".

Re: MS treatment a step closer after drug shown to repair nerve coating

#47

Post by Ovah »

wrkronmiller wrote: post #31

I'm confused about why Bexarotene can be sold as Targretin to treat "skin problems"[1], but cannot be used as a potentially life-saving treatment for MS. Is it that the dosages must be higher to treat MS? [1] https://www.webmd.com/drugs/2/drug-17979/targretin-oral/deta...

Drugs may only be prescribed for an approved set of diseases. Using a drug for a new disease indication without a study to back it up falls"experimental treatment". In other words, using a drug for an unapproved indication is doing scientific experiments on humans without approval which of course is unethical (and illegal). That said it's easier to get permission to use a new drug for a new disease indication if the drug has had previous clinical history of treating other diseases. At least in my country such permission is handed out on a case by case basis after the responsible physician has applied to the proper regulatory authorities.

Re: MS treatment a step closer after drug shown to repair nerve coating

#48

Post by caymanjim »

Ovah wrote: post #47
wrkronmiller wrote: post #31

I'm confused about why Bexarotene can be sold as Targretin to treat "skin problems"[1], but cannot be used as a potentially life-saving treatment for MS. Is it that the dosages must be higher to treat MS? [1] https://www.webmd.com/drugs/2/drug-17979/targretin-oral/deta...

Drugs may only be prescribed for an approved set of diseases. Using a drug for a new disease indication without a study to back it up falls"experimental treatment". In other words, using a drug for an unapproved indication is doing scientific experiments on humans without approval which of course is unethical (and illegal). That said it's easier to get permission to use a new drug for a new disease indication if the…

Not so in the US. Doctors commonly prescribe drugs for off-label use. They are legally allowed to and don't need the government's permission. Insurance companies might not cover it, the doctor's employer might not allow it, and if something goes wrong, they might be sued, and their malpractice insurance coverage might be canceled, but the practice is widespread, legal, and ethical. There are just limits and risks to consider.

Re: MS treatment a step closer after drug shown to repair nerve coating

#49

Post by Broken_Hippo »

neltnerb wrote: post #39
hardlianotion wrote: post #6

Earlier quoted context omitted.

What you said about life expectancy is not that clear, so I will clarify: average life expectancy for MS sufferers is 5-10 years shorter than the norm, but this gap continues to narrow.

Oh. I was about to say, my doctor said median was wheelchair in ten years, not dead. The severity varies tremendously, I (as sometime with MS) can totally see people with recent major episodes trading. They might not get another MS attack for years. Must have been a pretty bad side effect though, my first treatment literally resulted in me needing surgery. If that was better than nothing... I'm just going to guess th…

That's not the average now, though - especially not for someone taking medication. If folks ever even need a wheelchair, that is often temporary. It is so much more common to use other walking aids, if you need them at all. And this is still factoring in folks that aren't taking medications and are older and couldn't start on treatments early. This is all changing: People are getting diagnosed earlier than they were previously and started on modern treatments early on, which not only tend to reduce flares (in folks with Relapsing-remitting forms, the most common type) but they make flares less severe. All of this means as treatments get better and younger folks make up more of the statistics, the disability chances should still go down.

OF course, there are some folks that do better or worse. I have very few day-to-day symptoms and those are mild: I'm 42. Some folks get in pretty bad shape in their 20s.

As far as side effects: Some have a much higher chance of death. When that gets to high, they deem it unsatisfactory. I wouldn't be surprised if this was instead of or including a chance of being even more disabled or damaging heart/lungs or something else that shortens life.

Re: MS treatment a step closer after drug shown to repair nerve coating

#50

Post by starpilot »

hprotagonist wrote: post #3

Burying the lede a bit: the drug can’t be used because its safety profile is unacceptable, but the possible mechanism might be targetable by other future drugs. Translation: come back in 2040.

It's "lead" not "lede."
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