[Howard D]

I happen to have a decent amount of experience with this issue, but my solution(s) might not work for you.  As you will read below, my situation is rather different than yours, so please keep that in mind.

Although I have motor neuron disease, I also have Crohn’s. Thanks to my most recent bowel resection (8/2020), my Crohn’s is currently in remission. However, beginning in Spring 2021, my diarrhea got extremely bad. On my doctor’s recommendation, I started taking psyllium husks. I mix them with water and take them a few times a day. They are soluble fiber, so they end up absorbing water and expanding. This ends up slowing down transit time (for me), and I now have solid BMs on a regular schedule.

My gastroenterologist recommended that I consider also using Imodium, so that I didn’t have to take as much psyllium husks each day.  (I take a lot.)

Diarrhea can be caused by gut muscles contracting too quickly, causing food to move through you too quickly. Imodium apparently works by slowing down the muscle contractions in your gut, so that your muscles don’t push food through your intestines so quickly.  (Link)

I’m fortunate that I can still swallow things fairly well, so the psyllium husks don’t bother me.  And I’m reluctant to try the Imodium because I just don’t know the impact it might have on my gut muscles and how it might interact with my MND.  But I might try it when I get to the point that I can’t swallow the fiber.

Anyway, I thought I’d share my approach to this issue, and let you know that you are not alone.

Howard

[Howard D]

Amanda, I agree with Dagmar–well said.

And now, I know that no one asked me about this, but that won’t stop me from commenting 😉 I also apologize in advance for its length, as well as including some (very, very rough) math.

Correlation between COVID-19 vaccine and ALS? Or causation (or maybe acceleration)? It’s tough to tell, but I believe there may be a way for someone to do so.

Focusing on the US, most people got COVID-19 or a vaccination for it during 2021 / early 2022. In fact, probably more people got COVID than even recognized it at the time. But this also means that almost everyone who got early symptoms in 2021/early 2022 likely also was exposed / vaccinated during that time.

As a result, there could easily be two independent things going on here: (1) getting COVUD / vaccinated, and (2) getting ALS symptoms. And if they are independent of one another, then they are just correlated / coincidental (and not causal).

Fine.

Now, what would things look like if there was causation between the two?

(Now I’m going to get into some math. These are not precise numbers, but rather very rough, estimates. But they should give some indication of what to look for to see signs of causation.)

Now for some numbers. I have seen published estimates that there are between 25,000 and 32,000 people with ALS in the U.S. which is a country of about 333 million people, suggesting that roughly 1 in 10,000 people in the US share our horrible disease.

According to the ALS Association, the mean survival time is 2-5 years, with some people living much longer than that. For the sake of math simplicity, let’s assume 5 years. If we assume 30,000 people with ALS who live a mean of five years after symptom onset, that would suggest roughly 6,000 new cases a year.

Now between March 2021 when (when the vaccine first became available) and the end of March 2022, more than 570 million vaccine doses were given to people in the US.

If there were a causal link between vaccinations and ALS, we should see it as an increase above our ‘normal’ 6k / year baseline. The question is: how much of an increase would we see?

If a vaccination had a 1 in 100,000 chance of causing ALS, we would see an extra 5,700 cases caused by those vaccinations (although they may take a year or two or three to be diagnosed). If it’s 1 in a million, we would see roughly 570 additional cases caused by the vaccinations.

Those numbers suggest an increase of between 10% to 100% above my (extremely) rough ‘baseline’ estimated rate of annual ALS cases / diagnoses. (Again, these are very, very rough estimates, but enough to give us a sense of the magnitude of the issue. And also note that even if vaccinations accelerated the onset of ALS, there would be an initial spike as cases are pulled forward, followed by a dip below ’trend’ because those cases were not happening later.)

How could we identify whether this increase has occurred?

There are a number of ways to do so. Looking at the prevalence of the diagnosis would be one way. Or getting info on claims from Medicare / Medicaid / VA / insurance companies would be another.

But one quick & dirty way might be to look at the case loads at ALS Clinics. Over the past year or two have they seen their number of new patients increase by 100%? 50%? Or even 10%. Note that there are confounding factors, but such notable increases in patients at ALS Clinics across the country might suggest to some intrepid researcher that there could be some causation here that would be worth looking into.

But the bottom line (from my perspective) is that it is possible that there could be a causal link between COVID-19 vaccinations and ALS cases. But I believe that a causal link would show up in the annual number of new cases, and that if it doesn’t show up there, it’s just coincidence.

But as far as I know, no one has looked into these numbers, so I would definitely not rule out the possibility of causation.

Sorry for going on for so long, and thanks for staying to the end.

[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 😉

[Howard D]

Dagmar,

I actually think that the study has each of them as separate corrections (i.e., they are all independent risk factors) rather than having them all combined into one risk factor.

In the text of the article (not the conclusions) it mentions the correlation for each factor separately, and that they are each independent factors:

“This study showed that there were significant correlations between the following risk factors and developing MS post-COVID-19 vaccination using univariate and multivariate logistic regression analysis: Pfizer vaccine (P value 0.040), low serum level of vitamin D (P value 0.015), Positive EBNA1-IgG (P value 0.027), and family history of MS (P value 0.043). These risk factors can be used as significant independent predictors for developing MS post-COVID-19 vaccinations (Table ​<span class=”figpopup-sensitive-area”>(Table3</span> and Figure ​<span class=”figpopup-sensitive-area”>Figure1</span>).”

So, the statistically significant correlations were with the brand of vaccine, low vitamin D, and having a family history of MS.  But they were all independent, so each of them were risk factors by themselves, not when all combined together (which was not discussed in the analysis).  And, surprising to me, the family history of MS was the one with the highest P value. (Lower P values are better for rejecting the null hypothesis.)

But I do agree with you that we have to be careful of making those “small jumps” of assumptions that the covid vaccine triggers ALS and look deeper into each patient’s health history.