Michaels
New member
- Joined
- Mar 24, 2012
- Messages
- 2
- Reason
- Learn about ALS
- Country
- CRO
- State
- Croatia
- City
- Zagreb
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
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