Live data from Hacker News

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

theguardian.com

131–140 of 141 posts

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

#131

Earlier quoted context omitted.

I’m not convinced these diets work as advertised.. I’ve read tons of scientific papers and there are too many contradictions. For example these diets tend to forbid gluten intake, but some research imply better outcomes for patients with high whole grain intake. I’ve also read that inflamation is useful for preventing cancer, so what good is not having relapses when you get cancer from all the anti imflammatory stuff…

This made me laugh. You read tons of scientific papers? Good for you. As anyone with an auto-immune disease and seriously interested in healing can tell you: AIP, if followed to the letter, works absolute wonders within even just a single god-damn day. But sure, read your papers... I am sure they are funded by people who have a huge interest in the result that you can cure 30% of the general population by merely chan…

You are making too many assumptions here.

I’m not comparing AIP with chemotherapy.

I’m comparing specific AIP recommendations with research which might have other recommendations.

In this case eating the (sometimes 10xmore) expensive gluten free, “everything free” foods vs eating “normal” foods.

After reading results which show that eating whole grains gives better outcomes measured on the EDSS scale in the same period of time compared to eating white bread or not eating bread at all, what am I supposed to think?

The “normal” bread industry is funding science to opress the gluten free crowd?

And gluten is just one tiny piece of this puzzle.

My point is that I’m leaning towards reading about as much factors which play a role in my wellbeing, and then weighing my options with some kind of understanding about how they work, instead of accepting one size fits all solutions.

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

#132

Earlier quoted context omitted.

Looks similar to AIP diet. All anti inflammatory foods

I’m not convinced these diets work as advertised.. I’ve read tons of scientific papers and there are too many contradictions. For example these diets tend to forbid gluten intake, but some research imply better outcomes for patients with high whole grain intake. I’ve also read that inflamation is useful for preventing cancer, so what good is not having relapses when you get cancer from all the anti imflammatory stuff…

> I’ve also read that inflamation is useful for preventing cancer, so what good is not having relapses when you get cancer from all the anti imflammatory stuff..

Chronic inflammation is a cause of cancer, not a preventative.

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

#133

Earlier quoted context omitted.

I am male, which accelerates the progression. But that was what my doctor told me in 2012 for men, even if taking interferon (which I did). And the two big new ones since. I stayed basically great until 2017. But now both hands are mostly numb and my leg is numb. I've taken the best medication available at every opportunity. Now it's progressive. I'm 37 and was diagnosed and treated very early after just one mild att…

Did you happen to be under a lot of stress for long period of times? Did you find any (even anecdotal) correlation between some cause and the result of your disease transforming into progressive?

I am not even sure if major things are improved by my medication because I have no idea whether it would be even worse without. I can't do statistics on that... I definitely can't guess whether it becoming progressive is because I've had a lot of stress and wouldn't want to mislead anyone by suggesting it. As far as I know it just tends to happen eventually.

Stress seems to trigger attacks and symptoms though, I don't think that part is controversial.

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

#134

Earlier quoted context omitted.

Did you happen to be under a lot of stress for long period of times? Did you find any (even anecdotal) correlation between some cause and the result of your disease transforming into progressive?

Stress has never been proven to be a link, though it is often repeated. Being male does sometimes make things worse and males are more likely to have a more progressive form of the disease than females. (The vast majority of patients are females: I know they suspect an interplay of hormones creating different outcomes, but I don't know if they've proven it). As far as progression, that is something that happens to so…

Oh, I thought the statistics were that half as many men as women have it. I don't know if I'd call that vast, though admittedly most people who have mentioned that they have it have been women. I probably just saw bad stats.

Like, yes, my life has been very stressful for years at a time. Those times weren't when it became progressive though, and good luck finding a control that has never had periods of stress and then doing statistics on them somehow...

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

#135

Earlier quoted context omitted.

I’m not convinced these diets work as advertised.. I’ve read tons of scientific papers and there are too many contradictions. For example these diets tend to forbid gluten intake, but some research imply better outcomes for patients with high whole grain intake. I’ve also read that inflamation is useful for preventing cancer, so what good is not having relapses when you get cancer from all the anti imflammatory stuff…

This made me laugh. You read tons of scientific papers? Good for you. As anyone with an auto-immune disease and seriously interested in healing can tell you: AIP, if followed to the letter, works absolute wonders within even just a single god-damn day. But sure, read your papers... I am sure they are funded by people who have a huge interest in the result that you can cure 30% of the general population by merely chan…

> Gluten is one of the primary factors of developing auto-immune diseases and ergo also treating them.

Really going to post this with no sources?

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

#136

Earlier quoted context omitted.

Are you deep in biology like with a minimum BS or higher degree? If not, might just be too difficult to understand the value of the ideas. The lady prescribing the Wahls protocol is an MD so has a lot more invested into the field than the layperson. That said, she could still be wrong. One thing is for sure, there is no one-size-fits-all and there is no magic bullet. If there's something helpful for one condition, it…

Dr.Wahls has been disingenuous about her recovery because she downplayed her chemotherapy and the expensive e-stim therapy she received, which is not covered by insurance, and chose instead to focus her promotion and communication on something she could commercialize - her diet. M.S. patients like myself who do not have six figures to spend on e-stim are generally better off focusing on creating an optimal diet that…

Eat more organ meat, more dietary fiber, more veggies.

What part of the Wahls protocol diet is suboptimal?

Aside from the extra effort and expense. I mean health wise.

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

#137
post #80

Earlier quoted context omitted.

Check out Wahls Protocol.

The author of the diet herself seems to acknowledge that it’s very much unproven. I very much doubt there’s more to it than “unhealthy overweight people do better if they lose weight and eat more healthily”. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6412750/ Personally I’ll stick with treatments that have have had their efficacy well proven through rigorous medical studies rather than ones designed to sell hope on…

You're against better nutrition?

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

#138
post #80

Earlier quoted context omitted.

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.

FWIW, the Wahls Protocol benefits me. It's certainly not a cure all. And eating proper meals is a lot work. But it helps.

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

#139

Earlier quoted context omitted.

Stress has never been proven to be a link, though it is often repeated. Being male does sometimes make things worse and males are more likely to have a more progressive form of the disease than females. (The vast majority of patients are females: I know they suspect an interplay of hormones creating different outcomes, but I don't know if they've proven it). As far as progression, that is something that happens to so…

Oh, I thought the statistics were that half as many men as women have it. I don't know if I'd call that vast, though admittedly most people who have mentioned that they have it have been women. I probably just saw bad stats. Like, yes, my life has been very stressful for years at a time. Those times weren't when it became progressive though, and good luck finding a control that has never had periods of stress and the…

You are correct! Not as many males get it.

I was more pointing out that males, when they get it, are more likely to have a hard time and more likely to get primary forms and the relapsing forms are more likely to turn progressive early on (women wind up catching up after menopause sometimes).

And yeah, everyone has stress. They thought that stress caused relapses at one time, though, but further research has ruled it out. They can look at folks that have had undue stress and look at timing of relapses vs times of major stress to see if the link is correct. The 'stress-free life' advice still gets passed around though.

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

#140
They’re treating Microsoft addiction?!? Cool! ;)

No, seriously, it really did take me at least a half second to figure out they’re talking about Multiple Sclerosis. A rather different MS. I would encourage everyone writing and discussing this subject to be more explicit up front, and then they can keep calling it “MS” later in the article.

Post reply on HN