What is going on?

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Michaels

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Mar 24, 2012
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Learn about ALS
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CRO
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Croatia
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Zagreb
I made a very long post yesterday about studies related to ALS prevention as well as risk factors, and the moderator refuses to approve it.

If they do this, then it is surely a terrible thing to do so. I also sent an e-mail to the webmaster, but no reply so far.

Can someone tell me what rules I have violated with my post?
 
My first thought is as you said you posted, "about studies related to ALS prevention as well as risk factors", I'm thinking it is a bit too late for folks on this forum. I could be wrong. But it seems rather superfluous to our situation?
 
Did you have some links attached? Maybe the links were deemed questionable. They may turn up sooner or later.
 
In reply to "notgivnup", risk factors are important for people who might actually be at high risk and not even know it. Perhaps a forum member knows someone who is at a high risk, and after reading these studies could actually learn something that he/she didn't know, and help someone out? I just don't understand how it could be superfluous. It is also possible that certain things that might prevent ALS could possibly also lower it's effects.

If the moderators refuse to put it up, then with all due respect, they are doing a bad thing to everyone. I am only waiting for a reply from the webmaster/moderator/administrator. Please let me know if you will put it up or not. If they refuse to, it will show me that

1.) i was right that the medical community is avoiding this issue and
2.) i have wasted my time trying to help

In reply to Ms. Pie -- all of the links had references to scientific studies as well as journals. Really, it would be such a shame if my post won't be allowed.

Michaels
 
If it's good and proven unquestionably accurate information then it will show up. Our moderators just need to make sure that it is in fact accurate.
 
Actually, there is no such thing as "proven unquestionably accurate information" when it comes to risk factors for any disease for that matter. However, there is such a thing as scientific studies which show lots of evidence, backed up by facts. And in this case, they are being ignored, not only by this forum, but by more than 80% of websites talking about ALS.

I just need to know if it will be approved or not, and I am waiting for an answer. Why won't the moderators even answer that question? Just let me know for God's sakes, so that I don't have to keep asking over and over.

I wish all of you sincerely all the best, but knowing that people (moderators in this case) would censor such important information really makes me question humanity.

Michaels
 
This message board is maintained by members most of whom do things like type with their eyes and such. Sometimes they have better things to do than read your posts and links right away. They don't get paid to do this either from what I understand. Be patient and not so snarky and demanding. You catch more flies with honey than with vinegar.
 
Well, seeing how tons of new posts from other members have appeared on the forum today and mine still hasn't, I think I can safely assume that it won't appear at all.

I wasn't trying to be demanding or snarky, so I apologize if it came off that way. My only intention, truly, sincerely, was to help out.

It was a failed attempt.

Best wishes,
Michaels
 
It may appear tomorrow. When did you try to post it?
 
Don't feel bad, most of us are use to not knowing what will prevent ALS.
 
I just need to know if it will be approved or not, and I am waiting for an answer. Why won't the moderators even answer that question? Just let me know for God's sakes, so that I don't have to keep asking over and over.

I wish all of you sincerely all the best, but knowing that people (moderators in this case) would censor such important information really makes me question humanity.

The moderators don't owe any explanation for holding your post as long as they need to. It's obvious that you have an agenda in coming -- registered yesterday and already telling us that you have some special insight into ALS that we don't have. If you had bothered to read here for a while, you would have known that all posts that contain hyperlinks go to moderation. You would also know that the moderators that you are berating both have limited use of their hands due to advanced ALS, so it might take them a bit of time to get back to you or to make sure that your post meets the site's rules for offsite links. You might also have taken into account that yesterday (Saturday) and today (Sunday) were days that many families spend doing family activities rather than keeping up with a message board.

When the moderators think that your post meets site standards, it'll get published. I doubt that you've found anything so revolutionary that we (and you) can't wait a couple of days to see it.
 
im wondering how they have FACTS that say they know something to help prevent ALS, when they still dont know what causes it.
 
David will probably get to this sometime tonight or tomorrow. Personally I'm not going to spend hours reading through old studies that no one has followed up on in years. If there really was something to this I'm sure someone would be jumping on it other than this new member who does seem to have an agenda.

Al
 
The moderators don't owe any explanation for holding your post as long as they need to. It's obvious that you have an agenda in coming -- registered yesterday and already telling us that you have some special insight into ALS that we don't have.

I don't have my own website nor do I sell any supplements or miracle-cures and preventives. The links I cite in my post are referencing well documented studies. What agenda could I possibly have? It is a pity you think that way.

Never said I had special insight either. I repeat what I said in my original unpublished post -- my claim is that many studies which are well established are being avoided on major medical websites. The vast majority of websites keep claiming that 10% of ALS is familial, and the risk factors for the other 90% are unknown. This is false, as there is much evidence to a contrary. A very well controlled study in the Netherlands for example, is being ignored. In my original post I link to and cite specifically the names of these studies so that people can look them up and see that it isn't garbage I am spewing.

When the moderators think that your post meets site standards, it'll get published. I doubt that you've found anything so revolutionary that we (and you) can't wait a couple of days to see it.

Revolutionary? No.
However -- scientific studies which are very informative, useful, backed up with evidence, well documented yet avoided by many? Yes.

It would seem to me that those websites that avoid these issues are the ones that have an agenda.

I actually do have an agenda, and that is to make people aware that major medical websites aren't telling the complete truth about ALS risk factors and prevention.

im wondering how they have FACTS that say they know something to help prevent ALS, when they still dont know what causes it.

If you want to keep believing that, then that's fine. I obviously can't force you to think otherwise. In today's culture it is very common that people "deify" their doctors as if what they say is holy and unquestionable truth, and if their doctor says that there are no known risk factors to ALS or ways to prevent it, then everything that points to the contrary must be "bogus".

The entire purpose of my original unpublished post was to inform people such as yourself, that there are scientific studies which are being avoided, that show evidence that ALS isn't just a disease that "randomly attacks anyone with no known risk factors or methods of prevention."

I have no website -- I sell no product -- I claim no miracle cures either. My agenda was to inform people of things they might not have been aware about. You can continue to ridicule me all day.

My sincere apologies if I have offended any of the moderators. Best wishes to all.
Michaels
 
A minute ago I made a lengthy reply in which I respond to all the belittling and ridiculing comments directed towards me, yet this post is also being "approved" by the moderators.

No harm done. You can keep believing what you want to believe. You won't hear from me again on this forum.

Apologies if I offended anyone.
Michaels
 
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