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slowdancer		Posted: Saturday, February 04, 2012 7:56:04 AM
Rank: Member Groups: Member Joined: 2/9/2010 Posts: 13 Location: Germany		Jan, thanks. You are absolutely right! Hopefully beside all these SC topics there still will be room here, as in the past, to discuss "all" possible treatments in an open and respectful manner. Pete
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RL Schafferr		Posted: Saturday, February 04, 2012 10:23:18 AM
Rank: Advanced Member Groups: Member Joined: 6/14/2009 Posts: 5,621 Location: Inman ,S.C. USA		De Laval wrote: To everyone. Why is there always that underlying rivalry between the form members, it is better to find a solution to stop ALS. Nobody knows the cause it's all guesswork and likely to prove what everyone writes but short of oxygen under the name of hypoxia. And another thinks of an autoimmune disease I do not know who is right, and really is not interesting. Are all these phenomena have not been investigated by science?, I think so but that is purely my personal opinion. And it makes no sense to science to blame this science is anchored in legislation and regulations. ALS is and remains a great mystery, and maybe the cause is discovered by accentailly but so long as we have the OSC that helps us to survive. Jan Cause science aand regulation has killed a million ALS patients. Differences of opinion is why the thread is here. To argue about treatments, sort out the bull****, and rehash what we have tried and didn't work. New members need to know this. Nothing wrong with rivalry. We need it. You sound like Rodney King.( can't we all just get along?) Jan , frustration must come out.
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RL Schafferr		Posted: Saturday, February 04, 2012 10:27:00 AM
Rank: Advanced Member Groups: Member Joined: 6/14/2009 Posts: 5,621 Location: Inman ,S.C. USA		slowdancer wrote: Jan, thanks. You are absolutely right! Hopefully beside all these SC topics there still will be room here, as in the past, to discuss "all" possible treatments in an open and respectful manner. Pete Pete , there's always room to discuss. This forum isn't for the weak at heart. There's always PLM to visit. But , you have the right to an opinion. Just get ready for replies on it.
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De Laval		Posted: Saturday, February 04, 2012 11:07:27 AM
Rank: Advanced Member Groups: Member Joined: 8/19/2011 Posts: 416 Location: Netherlands		Ron. I can understand the frustration of our ALS patients very well imagine myself am I angry at the way we are treated by the medical world. But my parents raised me as a gentleman, always to continue with open eyes and mind to enter into the discussion, and especially continue to respect each other. A discussion should also be able to finish them without each other or to impose his will, and I feel right now that some members want to impose their will that is very undemocratic. Unfortunately, science has blood on their hands, but wash them before they go Scientists are unscrupulous and close their eyes to the suffering that causes ALS. And for me is not important how has right or wrong but can i do something with the information from the other member is important. Jan
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ichisan		Posted: Saturday, February 04, 2012 1:31:18 PM
Rank: Advanced Member Groups: Member Joined: 12/4/2011 Posts: 542 Location: United States		De Laval wrote: Ron. I can understand the frustration of our ALS patients very well imagine myself am I angry at the way we are treated by the medical world. But my parents raised me as a gentleman, always to continue with open eyes and mind to enter into the discussion, and especially continue to respect each other. A discussion should also be able to finish them without each other or to impose his will, and I feel right now that some members want to impose their will that is very undemocratic. Unfortunately, science has blood on their hands, but wash them before they go Scientists are unscrupulous and close their eyes to the suffering that causes ALS. And for me is not important how has right or wrong but can i do something with the information from the other member is important. Jan Jan, I have no respect for anybody who believes in the current US health system and defends it. I have no respect for anybody who has nothing but praises for a bunch of money hungry assholes who use the sickness and misery of others to make their fortune. This sort of behavior makes my blood boil and I am liable to blow a fuse every time I see it. LOL. Louis
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De Laval		Posted: Saturday, February 04, 2012 1:37:37 PM
Rank: Advanced Member Groups: Member Joined: 8/19/2011 Posts: 416 Location: Netherlands		Ron. It took a while before I knew who that Rodney King was because this kind of news we do not see in the Netherlands. Regrets but this comparison does not really and unfortunately you are wrong. I am a Liberal at heart who have very high freedom of expression are associated with respect to each other. It is time you consider the work of William Sheakspeare going to read this will calm your mind and heart. I want to give a statement which reads as follows (There is more between heaven and earth than we will ever will now Horatio) This statement says a lot about us as human beings. Jan
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RL Schafferr		Posted: Saturday, February 04, 2012 1:41:49 PM
Rank: Advanced Member Groups: Member Joined: 6/14/2009 Posts: 5,621 Location: Inman ,S.C. USA		ALS parients are mostly type A people. Doers and shakers. Lead , follow or get the hell out of the way. We can't tolerate no sense of urgency in people, incompetence in others , and just generally very opinionated .Some people can take things as been done by others and accept that it's the way it has to be. We look at it and say WTF is wrong with this picture? This makes no sense to us as terminally ill people to be tied up in total bull**** while we die. And then there's Eric and people like him, probably type B personalities , who have no problem with status quo . We will always bump heads. Don't mean we don't like one another. Just don't care for their beliefs, and can't understand their view.
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De Laval		Posted: Saturday, February 04, 2012 2:05:15 PM
Rank: Advanced Member Groups: Member Joined: 8/19/2011 Posts: 416 Location: Netherlands		Louis. Do you really think the medical system in Europe is different, I hope not because that would be very disappointing for you. Another point is that I also found a bad system but you must still agree with me that we are people who have made laws. We have here in the Netherlands a minister of health who may decide independently outside the EMEA or the FDA to approve a healing agent but unfortunately you have not and are therefore dependent on that crazy FDA What do you want to reach by acting as a rebel with many powerful statements or yeah, for this kind of thing the FDA is deaf and insensitive. Much better is to nominate candidates for the elections to approach our problem to make public as much as the media is there. Then you have a chance that your message is understood. By the way to much blowing make you sick here you can buy the canabis in every coffeshop it almost for nothing. But any way i don't smoke canabis Jan
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ENV		Posted: Saturday, February 04, 2012 8:42:17 PM
Rank: Administration Groups: Administration , Member Joined: 11/21/2007 Posts: 2,259 Location: USA		Conflation is the refuge of the ignorant. It's easy to just make up your mind about something and then castigate the doubtful. However, I prefer to deal in facts which require proof. That requires careful development, which unfortunately takes time. To conflate that process with the business end which so far fails to initiate that process is foolish and counterproductive to your own goal. And if you don't understand what I said, spend some time researching reality rather than being a "birther" of science. -- Le Meilleur Vin Avec Les Meilleurs Amis -- *The comment above is my personal opinion. I do not represent ALS-TDI*
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ELYSEE RECLUS		Posted: Sunday, February 05, 2012 4:36:21 AM
Rank: Advanced Member Groups: Member Joined: 8/26/2011 Posts: 441 Location: France		Dear ALS experts of this forum, dont take yourself so serious, you behave like doctors of theology fighting on the meaning of the trinity, its sterile, useless and destructive. take it easy : http://www.youtube.com/watch?v=DbYtqAWDF2U
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DeeBee		Posted: Sunday, February 05, 2012 5:03:48 AM
Rank: Advanced Member Groups: Member Joined: 7/23/2009 Posts: 1,578 Location: United Kingdom		There's nothing wrong with the scientific method and we need to have more faith in our research assistants........ http://www.youtube.com/watch?v=jEEz_zrbNs8 ....chuck another bat on the barbee and pass me the chlorite.
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Olly		Posted: Sunday, February 05, 2012 11:58:31 AM
Rank: Advanced Member Groups: Member Joined: 7/4/2011 Posts: 1,289 Location: United Kingdom		Off topic but just before Christmas my wife and I went to have a look at the local waxworks museum that is finally closing. After we had been there some time the janitor ask the wife to keep me moving as they were stocktaking..... It's never to late to laugh at yourself and the stupidity of this illness.. Now lets put the proceess of discovery back on the boiler instead of verbally bashing each other... Into the heart, an air that kills, from yon far country blows. What are those blue remembered hills, what sphires what farms are those. That is the land of lost content,I see it shining plain, The happy highways where I went and cannot come again
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