Consensus.app

[Dagmar]

Maybe the app doesn’t provide ALL the answers, as in: Keto Diet. Actually, new evidence shows a diet with high-glycemic foods (anti-KETO) slows down progression. There is an online lecture about this coming up:

https://neals.org/people-living-with-als/educational-webinars/the-benefits-of-macronutrients-in-patients-with-als-what-should-we-eat

[Howard D]

Dagmar,

I agree. I certainly didn’t mean to suggest that consensus.app (which is a website) had all of the answers–I mean, if it did none of us would be suffering with this horrific disease.

Instead, I found the website to provide a good summary of research articles related to a question along with links to underlying articles (and info on the rigor of the journal where it was published and the type of study) so that people can read / digest the articles for themselves. In fact, it can be quite useful to have the website look up articles on different topics, even if you don’t ask it to generate a summary for you. (Apparently they make money by giving you a number of free summaries each month, and then charging you for more.)

But science is messy–not just because it is experimental, but because the design of studies or their statistical analysis may be (inadvertently) flawed, because even if their design / analysis is perfect, there is probability that there findings are not actually statistically significant (since we typically accept a 5% probability that a result is likely due to chance or to some factor of interest), and because of other issues (such as p-hacking or outright fraud) as well. As a result, we often see promising results which may well conflict with one another and possibly not pan out with additional studies.

And so we look for a number of studies that are replicable and are eventually reinforced by others that support the same underlying causal framework / mechanism. And for health-related issues, it’s also important to look for other unintended consequences–whether they be long-term or rare (both of which will likely be missed in shorter-term clinical trials).

But those questions are quite different than the specific question of diets and ALS.

Based on your input, I went to consensus.app and asked it the following question:

Question: “Does a diet with high-glycemic foods slow down progression of ALS?”

Consensus’ Summary (with links to some underlying studies):

“Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease for which there is no known cure. Recent research has focused on the potential role of diet in influencing the progression of ALS, with particular attention to the impact of high-glycemic and high-caloric diets.

• High-glycemic index and load diets are associated with a slower progression of ALS, as indicated by less decline in functional rating scale scores and a trend toward longer tracheostomy-free survival.
• A high-calorie diet, specifically one high in carbohydrates, might delay the progression of ALS and is associated with fewer adverse events compared to other dietary interventions.
• Diets that are high in calories, whether from fats or sugars, may counteract metabolic alterations in ALS, such as hypermetabolism and weight loss, and have been linked to positive effects on ALS progression in both human epidemiological studies and animal models.

In conclusion, the current body of research suggests that diets with a higher glycemic index and load, as well as those that are high in calories, particularly from carbohydrates, may have a beneficial effect on slowing the progression of ALS. This is supported by evidence of less functional decline and potentially extended survival times in patients with ALS.”

Although no one has asked for it, now I’ll move on to my own thinking on diets.

The fact that quite a few different research studies have pointed out that high calorie diets (whether high-glycemic, keto or otherwise) are helpful for ALS seems to make intuitive sense to me. Having said that, would a keto diet, or maybe a keto mediterranean diet, or a plain mediterranean diet, or a high glycemic diet, or some other diet be best for ALS? I haven’t the vaguest idea. And I think anyone who tells you differently is overconfident (or lying)–there are studies showing that all of these (and likely more) can be good for people with ALS.

But based on my intuition about both (a) needing more calories than a ‘normal’ person (whatever that is) and (b) recognizing that inflammation seems to play a role in the progression of this dreadful disease, my personal response is to eat a diet that is considered to be anti-inflammatory. And I eat more calories than is typical for a person of my height / age / weight / gender.

But that is my choice, and I do not suggest others follow my lead (I am NOT a medical doctor and I also suffer from Crohn’s disease–so unless you’ve had your bowels resected twice, my situation is likely very different than yours). Instead, I suggest that others find something that works for them / their caregivers, review it with their doctor / nutritionist, and stick with that.

Summary: Consensus.app is a tool for investigations–it does not have all the answers. Science is messy–and studies often contradict each other, but eventually well-designed studies will result in other studies that will confirm / undermine them. Howard-d isn’t an MD and eats too much 😉

[Dagmar]

howard-d, you are correct that following a healthy diet, especially if it is tailored to your individual health needs & other conditions, is best.

RE: hypermetabolism – – “normal” or non-ALS patients burn calories at a predicted rate. With ALS- hypermetabolism… the muscles are burning calories at a higher rate.