Unexplained silence regarding possible ALS risk factors & prevention

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Michaels

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A big hello to everyone on this forum, :smile:

I'll keep this post as simple as I possibly can. I personally do not know anyone who suffers from ALS (Lou Gehrig's Disease), and I don't suffer from it either. What got me interested about ALS is very simple. I heard about it, and started researching it. I came to the conclusion that this is possibly the worst disease that exists. If not the worst, then it is most certainly one of the worst. Now to the main issue...

I am also not a doctor or any kind of "medical expert", nor am I a conspiracy theorist (yes, we did land on the moon). I am just someone who has done much reading about ALS, and I am a person who believes that for some odd reason, many doctors and scientists are avoiding talking about ALS prevention or ALS risk factors. All we get (basically) is a statement such as "5% - 10% of ALS is familial, and for the rest the cause is unknown."

The thing that is just mind boggling to me is how about 80% of websites who talk about ALS claim that this disease has no "known" risk factors and no "known" methods of prevention, when there is most certainly much evidence to the contrary.

OK, well if there are no "proven" risk factors and no "proven" ways to prevent it, why don't these websites list some STUDIES which most certainly do make very strong points, backed up with MUCH evidence? Let me be clear as possible, When I look at some very popular medical websites, I really see them avoiding this issue. I usually see statements such as "ALS is random, it attacks anyone, there are no known risk factors, you can't prevent it, etc. etc."

Quite frankly, doing my own research shows quite the opposite.

Here are examples of what I found, researching vigorously on the internet:

Vitamin E as a Preventive (American Journal of Epidemiology)

Omega-3 Fatty Acids and Vitamin E (Dutch Study - Veldink JH, Kalmijn S, Groeneveld GJ - Neurol Neurosurg Psychiatry. 2006 Apr 28)

Smoking as a Risk Factor (Dr. Carmel Armon - ALS researcher and neuroepidemiologist at Baystate Medical Center - published in the American Academy of Neurology)

The Cyanobacterial Neurotoxin "BMAA", found in tap water and also in shark fins, as a possible cause/contributor to the development of ALS. (University of Miami - Journal "Marine Drugs")

Exposure to Pesticides as a Risk Factor. Also the herbicide 2,4-dichlorophenoxyacetic acid (2,4-D), and organochlorines as well. Pesticide exposure showed > 2-fold increase in ALS risk, with greater risk at higher levels of exposure. (Several studies!)

Consumption of the artificial sweetener "Aspartame" as a risk factor.

Exposure to the chemical compound known as "Formaldehyde" as another risk factor. (American Academy of Neurology)

Exposure to heavy metals such as Lead, Mercury, and Aluminum as risk factors. (Conradi et al. 1976; Adams et al.1983; Armon et al. 1991).

"A Netherlands study has just found a way. In this study, the researchers discovered that a high intake of vitamin E (18 or more mg/day) and a high intake (32 grams) of polyunsaturated fatty acids work synergistically to reduce risk of ALS up to 60%."

Alright, so looking at all of these things I listed, and taking into account even more studies which support these claims, why is it that ALS is still to this day called a disease which "you can't prevent." I could list tons of websites who proudly declare that beside the fact that around 10% of ALS is familial, the causes for the other 90% are unknown/random. I just don't get it. I urge everyone to take a look at this information above.

So in conclusion, yes, there is no irrefutable proof that "X" increases the risk for ALS or that "Y" prevents ALS, but there most certainly is a lot of evidence, and it is being avoided. There are studies which clearly show several major risk factors, and many possible ways of prevention. I simply do not understand why these things aren't mentioned in the majority of the most popular medical websites. I won't mention the names of these sites, but you probably know them already.

This will probably be my only post on this forum, because the only purpose of my post was to inform people about what I believe is an unexplained "silence" from the medical community when it comes to ALS risk factors and prevention. I personally do not know anyone who suffers from ALS, but I have read much about this disease, and for what I think is a disease worse than any cancer (and possible the worst disease that exists), this strange silence about certain aspects of it is stunning, to say the least.

My point: The average person reading about ALS from major medical websites will only come to the conclusions that 10% of ALS is familial, that the causes for the other 90% are unknown (besides older age), that it attacks "randomly", and that there are no known risk factors or methods of prevention.

This needs to change -- and the sooner the better. :!: There is evidence to the contrary, and anyone who does vigorous research will see this. There are many many studies, and there strong evidence for risk factors, and there is also evidence for prevention. So instead of repeating myself like a broken record, I will end it here.

I hope that no medical professionals on this websites take offense by my post. I have the utmost respect for doctors and scientists who acknowledge the fact that there really is evidence for ALS prevention and risk factors. My post is really with the best intentions, and that is only to inform people. If anyone feels that what I have written here is useful in any way, please feel free to re-post my entire post on other ALS-related forums. I would actually encourage it, and it would make me very happy.

Thank you all for reading!

Best wishes,
Michaels
 

Michaels

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Thanks to the moderators for finally approving my post. Unfortunately, all links that talk about the studies have been removed, but I am still glad that my post has been published.

I hope it is now clear to people that I didn't have an agenda of selling any product whatsoever or claiming any miracle cures.

Best wishes, and Goodbye,
Michaels
 

Ms. Pie

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Thanks Michaels. Don't worry about it. We get a lot of quacks here so get defensive. Thanks for your efforts!
 

vzandt

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This doesnt really help the people who already have als. but thanks for trying
 

jb63

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And just what are YOUR credentials?

Sounds conspiratorial to me. There is big bucks to made in medical/pharmaceuticals. Someone would be raking in bucks selling something to reduce risk factors. The CDC and other major enterprises collect data.
 

ltbeauti

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Thanks michaels for your efforts . Those things mentioned are certainly risk factors for many,many, many ailments and diseases.
I do agree that ALS literature should be updated, but in regards to patient progression and symptom management.
Hopefully we will one day find a common link between the many different aspects of MND and ALS and thus fbd a cure.
 

trfogey

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Michaels,

Thanks for your effort, but you're not really telling those of us that take an interest in these types of things anything that we didn't already know. Unfortunately, the links between the risk factors that you list are tenuous at best. For every one of us who smoked before contracting ALS, there are millions who smoked that never did get ALS and there are probably thousands of non-smokers that got ALS. Likewise with the consumption of aspartame or being deficient in Vitamin E or omega-3 fatty acids or consuming BMAA from water supplies -- for every case of ALS related to that source, there are hundreds, thousands, even millions of people who don't get ALS.

If ALS were an easy disease to contract, there would be a lot more of us PALS out here in the world.
 

michelleRN

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All of those things listed have relation to a thousand other illnesses out there as well. Conduct enough studies and you can find a correlation between a substance and a disease. Unfortunately this doesn't often indicate a relationship of any real relevance. I agree with ltbeauti. Updating research as it pertains to varying rates of progression and less restrictive criteria for the "typical patient" demographics (males, 40-60? Yeah, right.) and the typical life expectancy. I think widening this knowledge base for medical professionals will lead to faster diagnoses, better understanding of the real patient population with ALS, and ultimately may lead to more reliable advances in causes and risk factors for it. I work with the hand surgeon who I saw when my fingers started to drop, and who created the ugly scar on my arm. He says today that he had no clue ALS could affect a 20-something female or he might have done further testing to be certain before surgery. Conversely, around the same time he had an older male patient present with similar symptoms and he had him consult with a neurologist as part of the work up - and it was ALS. Change the picture of the typical ALS patient, realize this disease is bigger than what most people think, make some noise and then maybe more will happen.
 

TedH5

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I do not even know what to say. Honestly why I have no reason to think the intentions are anything but good there is just not enough empirical data to prove that any or all of these things truly contribute to the cause of ALS. I guess posts like this and the idea that they are going to post once only just leaves me scratching my head.
 
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