Comment by secondo | Hacker News Reader

Comment by secondo | Hacker News Reader

To me, following modern MS research progress is as exciting of an inward journey as space exploration is an outwards one. In fact to the point where I have considered leaving the tech field within the next 5-10 years to partake in it so it's fun to see this here on HN.

Just 20 years ago the first disease modification treatments were introduced. These were recurring injections of interferon-beta (1b/1a) for a 18-38% reduction in relapses and annual relapse rate (ARR) of 0.256[1]. Today there are about 20 different options, with Rituximab and humanized variants indicating an annual relapse rate of 0.044 for RRMS patients with a well understood safety profile[2]. On such medications an MS patient can expect a relapse every 22 years vs every 2.5 years unmedicated.

My pet theory is that MS research will ultimately lead to significant breakthroughs in longevity research. This is based on the morbid view that the disease is serious enough for risks to be taken in understanding auto-immune responses, crossing the blood brain barrier and remyelination.

[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5474703/

[2] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5109942/

As someone with NMO and on rituximab ... I'm all for you joining the many, many people working on these conditions. You have no idea how thankful I was to everyone that has worked in this field (and fought for funding in this field) because only a few decades ago my prognosis would have been MUCH worse.

This news item gives me even more hope.

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.

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..

In theory if you’re comparing white bread eaters to whole grain eaters I’d imagine there would be a net benefit. I wonder if whole grain vs no grain has been studied.

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's probably harmful for another. The body is a complex holistic system after all.

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 positively impacts their microbiome while maintaining a normal BMI and exercising at a comfortable level.

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.

> I’ve read tons of scientific papers and there are too many contradictions.

Dietary science is full of contradictions, and sometimes contra-indications.

There seems to be a lot of focus on some sort of mythical one size fits all diet for everyone. As if everyone's body systems would react in the same way to any given diet and with an assumption that you can rigidly control the ingredients in your food while still getting food from the grocery store and possibly restaurants.

When evaluating diets for conditions, I would suggest trying to figure out:

a) is it grossly unhealthy / what signs could I use to see if it is affecting my health negatively? b) does it seem to work for some people? c) is it something I could feel satisfied with for a long time? d) how will I know if it's working or not? / how will I be able to confirm?

This is generally a smaller burden of proof than is there scientific consensus that it's a good idea. For many things that might have a connection to food, there isn't consensus on the mechanisms involved, and there may be multiple. It's plausible thst some mechanisms would be affected by diet, and others wouldn't, so some people would see good results by eliminating things, others would see no change, and others may have bad results.

> 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.

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 amazon.

You're against better nutrition?

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

“Just 20 years ago..."

Personally, when people think we are making good progress on something, I’m reminded of these words:

“Before this decade is out...”

Sure, great and rapid progress might require a couple percent of US GDP, and a million people working on a problem, but advancing medical research a few decades in the next 10 years, would benefit everyone.

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.

what's the craziest idea you have heard of that would advance medical science?

Usage of BIL Gates in gene therapy - https://en.m.wikipedia.org/wiki/Transcriptor

The possibilities boggle my mind

"Biological computers will probably obviate the use of many pharmaceutical drugs."

My mind is blown, to say the least. Thanks for sharing!

The thing is honestly, we make incredible progress every decade. What's important is doing it carefully, correctly, and investing in the right areas to make real positive change (less viagra and hair loss probably).

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.

Here’s the story about the accidental discovery of Viagra.

https://www.theguardian.com/lifeandstyle/2017/jul/11/from-vi...

For some reason, every time this discussion happens, people think we spend a lot of research money on hair loss and impotence drugs.

Next, move onto how much care for people with Alzheimer’s is costing:

https://www.cbsnews.com/news/alzheimers-costs-americans-277-...

It would be cheaper to invest into medical research...

Hmm, if memory serves, there was an old paper from 2013 that viagra might help with womens' period pain. (Dilates the blood vessels, right?)

Did follow-up studies for that ever happen? Was it affirmed/refuted?

I work in the industry and I agree we make remarkable progress now. And for some technologies like CAR-T and gene therapy, we’ve just started.

Your HCV example is a great one. Before the anti-virals, it was interferon. You had to take it for months and from talking to people, it makes you feel like you have the flu...for months. The label actually describes a risk of suicide. It’s a very rough drug to be on and the cure rate is <50%. And that’s if you stick with it, which many people don’t.

Today, we have regimens that are weeks in length, minimal side effects and 99% cure rates across all genotypes.

You’re talking about going from a very difficult to cure, chronic condition that can lead to liver failure or liver cancer to just being cured after 12 weeks.

It’s absolutely remarkable.

As Brooks said (paraphrasing), "you can't make a baby in one month with nine women".

I'm reminded of the joke between the cardiologist and immunologist...but the story of MS therapies goes hand in hand with the revolution in molecular biology - and by extension, immunology.

https://twitter.com/nachristakis/status/1291414168713797638?...

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