What do you think of this latest advice about a diet for ALS patients?

[Dagmar]

Actually, I’ve never followed a specific diet plan (ie, Keto, etc.), believing I don’t want to put my body under any more stress than it has already dealing with ALS. So, I eat a wide variety of food groups. Plus, I’m not a believer in focusing on diet/specific foods for a “cure.” However, looking back, I realize my diet has been leaning towards high-glycemic foods – – who knew? Maybe this has been helpful for my ALS. Who knows? I wonder what other pALS are experiencing? It’s a very interesting topic.

[jalves]

With my C9orf72/ALS I opted to take metformin ( https://www.als.org/blog/researcher-spotlight-laura-ranum-phd-2022-clinical-trial-awards-program-recipient ) so I am actively lowering glycemic levels.
Am I doing the right thing?
Probably not!

I don´t know if I continue or suspend the metformin, I don’t know if my wealth was worse than it is in the absence of metformin therapy??

als.org

Researcher Spotlight: Laura Ranum, Ph.D., 2022 Clinical Trial Awards Program Recipient

Dr. Laura Ranum, director of the University of Florida’s Center for NeuroGenetics and the Kitzman Family Professor of Molecular Genetics and Microbiology, is currently conducting a phase 2 trial for C9orf72-linked familial ALS with support from the Associ

[Howard D]

In all honesty, I wouldn’t worry too much about this.

As I recall, the initial high GI/GL study was based on a periodic survey of foods eaten, and then the investigator looked through the data to investigate a number of different hypotheses, this was significant and they wrote it up. While a way to identify potential hypotheses, I wouldn’t depend on it’s conclusions with a follow-up study using a different data set that is designed to look at the issue.

Now there was another recent study by most of the same researchers, using the some of the same cohort (COSMOS) as this observational study plus another notably larger group (PRO-ACT). And instead of observational data, they use actual blood samples and looked at A1c levels (which are interpreted as a measure of blood sugar over several months). This study (“Blood glycated hemoglobin level is not associated with disease progression in amyotrophic lateral sclerosis”, PMID: 39329381) concluded:

“In the ALS COSMOS cohort (n = 193), HbA1c level was not significantly associated with the change in the ALSFRS-R total score from baseline to the 3-month follow-up (p = 0.8) nor baseline to the 6-month follow-up (p = 0.4). No significant association was found between HbA1c level and tracheostomy-free survival (p = 0.8). In the PRO-ACT cohort (n = 928), no significant association was found between HbA1c level and the rate of ALSFRS decline in the first 200 days (p = 0.81 for interaction) nor between HbA1c level and survival (p = 0.45).”

My take away from this is that while a study looking at GI/GL of what people recalled and wrote down in a periodic questionnaire might suggest a link between high glycemic foods and slower progression of this disease that causes us all so much pain, a different objective measure of blood sugar doesn’t seem to actually show that.

Of course, there could be some explanation for that discrepancy. For example, maybe people are eating high GI/GL foods and then doing something to get their blood sugar levels down more quickly than the typical person so that it doesn’t affect their average blood sugar over time. But regardless, I agree with the authors of this study, who concluded:

“In addition to previously reported limitations, the current analyses were further limited due to the observational nature of the study such as non-random treatment assignment and cross-over between treatment groups, and smaller sample sizes in the riluzole and no-riluzole subgroups which might have affected the survival analyses in particular. The recent observation that average blood glucose level is not associated with disease progression highlights our incomplete understanding of glucose metabolism and ALS pathogenesis. A randomized controlled trial incorporating a biomarker such as continuous glucose monitoring is needed to decisively examine the impact of dietary glucose in ALS.”

And so I wouldn’t put much weight into this study until there is actually a follow-up more rigorous study that shows similar results to this observational one, or at least doesn’t suggest that it’s likely wrong. And, of course, I’d be among the first in line to participate in the follow-up study 😉

[Dagmar]

I agree with you howard-d, we don’t know enough about ALS and diet to make an assertion. Follow up studies are needed. But, meanwhile… I’m enjoying my meals a little more 😉