[ramraj07]

I sincerely hope you don’t try it without consulting your doctor. EAE mouse models are “like” MS but barely. Something working or not working in EAE models is only a vague suggestion that the same will work or not work on people. This thing can be a supplement but we don’t know how it’ll react with your other medication.

The linked article is a fluff piece written by the university PR. According to them every lab in their university is curing cancer and MS and AIDS every day.

[eyelidlessness]

I don’t have MS, but I have friends who do and I fully trust them to be appropriately cautious when they react to relevant medical news. They’re among the most medically informed and adept people I know, and not prone to flights of fancy in MS treatment. Maybe some caution is due in lecturing people about how they address dealing with their own illness.

[jdwithit]

That is wonderful for your friends, but I don't know what they have to do with this individual you have never met. My uncle has lived with MS for almost 50 years and is in the final stages of life unfortunately, which I guess gives me the same level of credibility. I would not advise a stranger on the internet to inject themselves with something based on one study done on mice.

I'm also not going to tell them what to do with their own body. But "run it by your doctor first" seems like a reasonable thing to suggest, even if they ultimately decide to do it anyway.

[neltnerb]

I'm not going to judge anyone (I have MS) but it's extraordinarily difficult to analyze evidence when the disease progression is random flares. If I have a flare, is it because a medication isn't working? Or is it working just fine and I would have had five otherwise? Not really any way to know.

I would not take anything my doctor didn't say would at least not cause harm. But the calculus is different for other people.

Among groups of people with MS I've chatted with there is kind of an unspoken rule to not advise treatment because we all know that we are all different in treatment, symptoms, probably cause... you can get off into the weeds pretty easily.

Lipolic acid, vinpocetine, curcumin, lots of things are anti-inflammatory or good for neuropathy. I've had people recommend getting controlled bee stings, hensbane, obviously meditation for reducing stress and cortisol, and if we go in the direction of alternative methods (which I know people with MS who have used) you get acupuncture and yoga and herbal medicines. CBD in Europe is a treatment, I'm sure other cannabinoids would help different people in different ways too. I just have to tune it out, I want to spend my attention on what I'm good at and enjoy, and trust my [MS specialist] doctor to let me know about new treatments.

Study says "inflammation decreased" which is great. But lots of things do that, so the question is how much... I wouldn't trust it without a fair bit of statistical evidence without my doctor telling me that whatever random supplement is safe enough to risk.

[zamnos]

Do what's right for you, but never mind Europe, CBD is an accepted treatment in all US states. More specifically: there are no longer any states outright banning the use of CBD. This is not any sort of comment on MS and CBD, mind you.

https://cfah.org/cbd-legal-states/

I'm glad you have a specialist doctor whom you trust. MS is a relatively known quantity, having being first described by a neurologist in 1868. Not all diseases and not sufferers have such a privilege. For something newer at the edge of medical sience, like AIDs was in the 1980s or like Long Covid is now, patients are finding doctors of only limited use, and the FDA an impediment rather than helpful. If there was a cure for MS available in Mexico, would you not start a Dallas Buyers Club for others afflicted?

[neltnerb]

Honestly, I trust the FDA to mostly do a good job and would wait -- unless the time involved would mean that waiting would render the treatment moot.

In that case it seems like there's more reason to try, at first, but there is a real cost. The cost of time spent focusing on enjoying what you have in the search for a better that may or may not come. And the cost of spending your days dissatisfied that it's not better than it is.

I don't think chasing medical miracles is a good way to spend my days. If the treatment is safe and works I'm confused why you believe the FDA would prevent it's use, is that a common scenario?

[zamnos]

Dissatisfied is one thing. Wouldn't you rather not spend your days having flares at all though? A trip down to Mexico and, like, $50k for a stem cell treatment (HSCT) could be the cure for your ills. It's definitely not got FDA approval, and your mainstream doctor definitely going to advise you against it. And I'm some random Internet commenter so definitely don't remotely read this as treatment advice. But next time you have a flare up, tell me what you wouldn't do to never have them again.

[mwbajor]

There is too much contradictory evidence from the medical community on the efficacy of vitamin supplements. However, enough circumstantial evidence exists to prove two things: 1) Diet studies are hard 2) Pharmaceuticals are not going to fund a study for a cheap supplement 3) If this is true then the FDA should fund a "good, big diet/supplement study" but they dont. For this, I would say the FDA can't be trusted with "doing a good job" when a possible cheap solution exists.

[eyelidlessness]

> I would not advise a stranger on the internet to inject themselves with something based on one study done on mice.

I wouldn’t either.

> But "run it by your doctor first" seems like a reasonable thing to suggest, even if they ultimately decide to do it anyway.

Sounds like we’re mostly on the same page. I just trust the people I know with serious illness to know this stuff already, even if they get zealous about something that might improve their lives. Because even my friend with MS who has a long history of impulsive mistakes isn’t just injecting random things just based on news stories.

[mwbajor]

Not trying to denigrate your response, people do need to make informed decisions. However, "trust your doctor" / "ask your doctor"? People always say this phrase as a knee-jerk reaction. I think that a scientifically minded board like HN can corroborate my experiences in that: MDs are not scientists, in most cases not up to speed on current research (or any form of "science" or what one might believe as science) and many times the most inept at anything other than following their training. Its a reason medicine is moving at a snails pace and we need more open source or civilian science initiative.

Among our community I say, make your calculations and take your dose. Don't talk to your doctor, you'll receive no usable feedback, instead, report your results.

[Maursault]

> MDs are not scientists

?

Medicine is science.

The definition of “scientist” includes someone learned in science, and so a physician absolutely is a scientist. Traditionally trained physicians learn physics and chemistry, biology, biochemistry and molecular biology, and later, anatomy and physiology basics.

But I suppose if MDs had any brains they would have forgone medical school and just got an HN account. Then they could have known everything instead of merely diseases and drugs.

[mwbajor]

Its hardly a science, you can look up the arguments but I'm not the only one that says this. Covid is over, we can stop worshiping the medical field..

And if trying to take physics and organic chem at a community college during the summer so that the "hard classes" dont pull down their GPA is hardly a training in what you think science is.

I'm not trying to demean them, but its not their job to understand the complexities of these drugs. I know alot of MDs and I can guarantee you they would agree. I've had these conversations with them before. Bottom line, they wouldn't be the first ones to ask if I wanted to experiment on myself with some new chemical.

[ramraj07]

If you trust your doctor so little, go find one you trust? A good doctor should be able to have a level headed conversation about things like this. If you have MS and are not in touch with an MS specialist what are you doing? If you are, do you really think that specialist wouldn’t know this supplement? Even if a supposedly good MS specialist doesn’t know about this compound, at the least they will look it up and tell you if it’s okay to try.

I myself don’t trust most doctors and do my own research. But I make it a point to find ones I can trust. I did a PhD in biomedical engineering and know a metric ton of biology and still wouldn’t trust myself to decide stuff like this myself. A good doctor will bring a ton of experience, a keen understanding of human physiology, and a network he can tap into for more tips. Underestimate them at your own bodily peril.

For this compound in particular, here’s my amateurish warnings already: it’s clearly hepatotoxic, it’ll likely not even have an effect (EAE models have no real relevance to human MS) and will likely interact with other drugs you take as well.

[mwbajor]

Its not that I don't trust MDs, its that I don't trust them to be at the forefront of their field.