Compared to others, I'm a relative newcomer to posting here and I have only been reading the forum since November 2007, shortly after I received a second opinion of an ALS diagnosis.

The benefits - tangible and intangible - that I see from this forum are many, but include great moderation, insightful theories, diligent research, passionate energy for loved ones and above all, a willingness of PALS and CALS to share their thoughts and experiences with others. For all these contributions to this forum, I thank the collective membership. Some I shall never understand (Mary Reid-I think I've understood less than 1% of what research and hypotheses you've posted-but I love them all and am confident that you will be one of those who actually hits the nail on the head) but I certainly appreciate all the effort that goes into making this forum as good as it is.

At the risk of being a lightning rod, it does seem to me at this moment that the tone on certain threads in this forum has turned decidedly negative - not with respect to whether or not something might be therapeutic - but just some meanness with regard to certain points of view, slights or perceived slights, lack of hoped for responses or what have you.

It troubles me.

Somehow, not of our own choosing, we're in this "club". We did not get to check the membership ranks nor did we have the opportunity to review the list of "benefits" of membership. We did not voluntarily join, but here we are, PALS and CALS. (okay, the ALSTDI folks HAVE volunteered to be in this arena-and for that, I certainly am glad). While it's unlikely that we can all be friends with each other, I think it equally unlikely that any of us is the natural enemy of any other member on this forum ("we have met the enemy, and they are - not us!"). In the same vein, none of us will view our path with this disease in the same way: what steps must be taken, what hopes must be grasped, what energy must be expended for a certain position or effort or hypothesis. Our individuality is no less now than before our diagnosis. A positive and respectful tone between the members of this forum is no more difficult to produce than a negative and disrespectful one. The former will make the sorting process much more pleasant as we, Eli Whitney-like, separate the important from the less important.

Maybe it's the economy. Maybe it's pre-spring fever. Maybe it's the outrage over the realization that we have what we have. Whatever it is, it's just not that helpful in building community and finding a solution for our problem. Can we please take a pause and reflect that we're in this - kind of - together? If we must, let's save any negative energy we feel for those outside this group who are truly impeding the progress to a cure.

Thank you.

Scott - CT, USA - dx 09/07

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Scott-CT-dx 09/07

What should be disturbing to everyone is the rising death toll and number of broken families worldwide as a result of an uncontained illness known as ALS. How many more decades? When will we have an effective treatment like other disease groups? Forget cure, we need an effective treatment. Let's worry less about the comfortable researchers and more about the pALS that will lose their battle with ALS tonight.

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Doing Nothing is Unacceptable!

John