Just some thoughts...

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Just some thoughts...

Postby CCmom » Wed Jul 07, 2004 1:29 pm

I found this board a few months ago - I spend the majority of my spare time researching MS, as I have a 16 year old son who is being treated for MS, and has been for the past 3 years. I was very impressed with the board when I had the time to take a good look at it, and I referred several acquaintances to it. I love the fact that all of the medications are divided into different forums, and the articles are very informative. I posted as a guest a couple of times with warm, welcoming responses, and then I decided to join.

I feel as if I cannot get enough information, and my research has become somewhat of an obsession with me. I can empathize with those of you who have MS, as well as see it from a "caregivers" point of view as a mother of a young man with MS. We all make tough decisions every day, and these decisions aren't any easier when you are forced to make them for someone else. I felt I had alot to offer this board for several reasons. I have a different perspective on this disease as a mother to a teen with MS. I can't really say it's from the "outside looking in", because this has all been really personal for me, and I've suffered through every relapse and every spinal tap and every injection / reaction right along with my son, but my perspective must be different from those of you who live with this disease inside your own bodies every single day of your life. In my heart, it feels the same, though. I've cried more tears than my son ever thought about crying. I have an extensive medical background, unfortunately not in neurology, but my research obsession has brought me up to speed, and there isn't much you can throw my way that I don't have knowledge of.

I saw this message board as a support group, as well as a fountain of information, so I joined. And on one of my very first postings, I was blasted by a member here and deemed irresponsible for decisions regarding my son. This member was willysnout1. He also went on to question how I could sleep at night. That is not "support".

I don't expect everyone to agree with everything I say, and I respect anyone's right to disagree, but, Willy, you didn't know anything about me, and I mean ANYTHING! And it's a bit too late to ask the questions AFTER you call a mother of a 16 year old with this horrible disease irresponsible, believe me. I responded to you immediately, but in my haste, I must have deleted the message, because it never posted, and Aaron assured me that it was not removed. I guess that is a good thing, because I forced myself to cool down a bit and I believe this is a much better way to do it than the first attempt was.

I received your apologies, Willy, each and every one of them. Under normal circumstances, I would have accepted the apology and moved on, but after reading through your history of postings on this board, I do not accept your apology. You have a long history of this type behaviour on this board, and you have gotten away with it way too many times. At first, I honestly thought you had some sort of personal vendetta against me, but I see that you just disagree with pretty much everything in this world. Sometimes, we do things that we can't take back. I'm willing to bet you've spent as much time apologizing in your life time as you have instigating controversy, because that's just who you are. You try to come across as someone who is knowledgeable, but when you don't think before you speak, it just doesn't fly.

I almost left the board because of this, but instead of leaving, I would like to request that you NEVER EVER respond to me in any manner, Willy. I don't care if I post that it is raining and you want to argue that it isn't raining in your part of the world, please refrain from doing so. I have enough chaos in my life without adding you to the mix. And I would think you have run enough people away from this board for now. Nothing I say from here on in will be directed to you, Willy.

And to the rest of you, I have truly appreciated your warm words and support. You guys put me in touch with an excellent source, a group of parents of teens with MS, and I will be forever grateful. I think this board has such great potential, and I'm glad to have the opportunity to know each and every one of you! Take care!

Kim
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Postby willysnout1 » Wed Jul 07, 2004 2:04 pm

Kim, you're certainly within your rights to reject my apologies, but I'm sorry that you chose to do so. They were heartfelt and sincere, and the harshness of your response was wounding. I can't help but think that it must be nice to be perfect and thus have no need to utter the three most ego-deflating words in the English language, I was wrong.

I will aspire to your nobility of spirit, yet I must inform you that I cannot comply with your request to avoid responding to what you write. The only person you can control is yourself. I will post what I want subject to the rules imposed by the owner of this message board, whose judgments are final. Thanks much, and take care.
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Postby billf » Thu Jul 08, 2004 7:19 am

Kim,
you have the support of (nearly) everyone inclding myself. As for Willy, you just need to get used to him. I once worked with I guy like him. No matter what I would say to him, he would scan it microscopically searching for something, no matter how small, to disagree with. He never really actually listened to what people had to say in his obsession with finding something to disagree with. In fact, I started making statements to him that were his own opinions given to me a few days earlier, and he would still disagree with them, forgetting that they were once his own beliefs. Some people are simply determined to be contrarians. Pitty them as they don't have mnay friends in the world. I don't know if Willy is being paid to do this, or if that is just how he is. I hate to cloud this forum with personal tirads, but I have to agree that Willy is something of a thorn in everyone's side. He has some great thoughts, it's too bad he is so constantly abrassive. Just get used to him, like the noise of a barking dog across the street, and move on.
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Thank you, billf

Postby CCmom » Thu Jul 08, 2004 7:55 am

I'm not too worried about Willy, but thank you for your encouragement. I kind of see him as a fruit fly...Always hovering and irritating, but carries no weight.

I do worry about the fact that he is definitely running people away from this forum, and I think this web site has so much potential. It's a shame.

Good to know that I am not the only one who feels this way, though. I've received alot of private messages of support, and I've filed the proper complaints. Thank you for your kind words! Take care, and have a great day!

Kim
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Postby willysnout1 » Thu Jul 08, 2004 10:04 am

I find it interesting that I seem to have been deemed exempt from this board's rules against personal attack. I have not personally attacked anyone here. Not even CCMom. Came too close to the line with her and pulled back, but there was no personal attack. Yet, now I am being called plenty of things here. You'd think I napalmed a village somewhere.

Being an Internet veteran, I can take it and am fully equipped to respond. I am familiar with the paradox of thin-skinned posters, like CCMom, who can dish it out but cannot take it. Such is life, which is frequently less than fair. :roll: CCMom, I said it the wrong way, but I didn't say the wrong thing. And since you don't want to give me a chance to say it the right way, then I'm just going to say it.

CCMom, you don't have multiple sclerosis. I do. At the most important level, you don't know what your son is going through because you don't have his symptoms. I do. It's not your future you're gambling with, it is his future. Long after you've patted yourself on the back for giving him some quack therapy that, golly gee just didn't seem to work out, poor thing poor thing, he will still have MS and you will not. Will it be worse because of a decision you made for him?

You'd best not forget that, lady, because that's the issue here. It's not about me being a jerk or about you being self-righteous and unforgiving. It's about your kid and his future. Think about it. By taking him off the approved medications, you are now responsible for what happens. Not anyone else. You. This is someone's life we're talking about. He is playing for keeps. So am I. What are you doing?
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Postby Arron » Thu Jul 08, 2004 10:28 am

Willy,

I have received multiple complaints about you from members of this site. While taking smaller actions, I have for the most part defended you each and every time, noting that you are representing a valid viewpoint and that technically you are not doing anything wrong.

However, this is a community, and there is a group of people that now feel incredibly uncomfortable because of the way in which you respond to them. The tone of the forum has changed from a small town to a big city. You have a right to do as you please so long as you follow the technical rules, but I as moderator of this board have a right to defend our community.

I'm going to ask you to please refrain from dissecting posts, or responding for the sake of responding. You have wonderful comments in response to people who ask for help with Avonex for example, but those posts in which you line-by-line pull apart someone are not helpful or appropriate, or even a good use of your own time as people will only skim them. There is no need for every conversation to turn into a debate or war.

I'm also going to ask you to keep everything non-personal. Do not question people's motives or judgment. That is not relevant-- if someone chap's your hide, let it go or send them a private message. A simple post that says "Hey XXXX, you have a PM" will get your point across to the community that you had a response, but did not feel it was relevant to the masses. As an internet veteran, you must well know by now that you will not convince people their fundamental beliefs are wrong in a public message board. If they ask you to stop messaging them, stop it.

As above, this is a community, you are a member of our community and I have welcomed and defended you and your right to post here consistently. However, there will come a point in the very near future where if I continue to receive (and verify) complaints that you are consistently chasing people away or changing the focus of this board from killing MS to killing each other, I will have to ask you to leave.

Sorry for this difficult post, but I must step in. :(

While this particular circumstance involves Willy, this policy applies to all.
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Postby willysnout1 » Thu Jul 08, 2004 11:57 am

Arron, I understand. It's your website and as its publisher you have the absolute right to manage it as you see fit. I will withdraw from all participation here in any form, and you can run an ineffectual haven for alternative medicine promoters and their victims, complete with the requisite wild charges against "the powers that be." Good luck. You'll need it. Please de-register me, lest I be tempted to post here again.

From an old country song:

A friend came around
Tried to clean up this town
His ideas made some people mad
He trusted his crowd
So he spoke right out loud
And they lost the best friend they had
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Postby Daunted » Thu Jul 08, 2004 3:07 pm

I don't love everything Willy posts, but his dissecting nature is actually useful. He's a sharp guy and when I read exchanges between him and others, I always learn something.

I sometimes disagree with him, but usually as regards MS issues, he's a valuable resource to the electronic community.

No one has to respond to anything he posts. Or believe it. But I find his opinions very valuable and his writing is fun to read, because he's a damn good wordsmith.

I suspect some of these people are new to Internet forums, or on-line behavior in general. A thick skin is required, and you have to realize that you've never met these people, and if you did, they're probably pretty nice people despite your understanding of what they've posted on the net.

This is actually my favorite MS website, but I'm sorry to see it moderated via a democratic system as was described. That means if a few people have a thin skin, or a bias, they can railroad someone out of town or make them apologize for giving their opinion. That doesn't make much sense to me.

If I was Willy, I would have resigned from the board, also.
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To Daunted

Postby CCmom » Thu Jul 08, 2004 4:11 pm

Perhaps you could read back on the postings in question re: 16 year old with MS diagnosis. Willy's "opinion" was neither useful, amusing, or "valuable", and his statements were made with very little knowledge of my son's situation. Alot of times these "wordsmiths" are nothing more than that, and if you look beyond all of the fancy terminology, you will see something entirely different. Just because you have a good vocabulary doesn't entitle you to turn an MS website into a battleground. And it doesn't mean that you necessarily know what you're talking about, it just makes it a little more difficult to see through if you don't.

I didn't come to this web site to argue, nor am I "new to Internet forums". I've utilized the internet since it came into existence, and since my 16 year old son was diagnosed with probable MS 3 years ago, I have spent countless hours online each and every day, trying to learn everything that I can. I think the other web sites that I post at were the exact examples that made Willy's statement so incredibly bothersome. Everyone disagrees on all of the message boards at some time or another, but he is the first person I have ever seen who disagrees with every statement made, and if you contradict him or ignore him, it only gets worse. However, my complaints about Willy were not the only complaints made, you can rest assured of that.

It's always good to engage in a healthy debate with someone, especially when you have a base subject as interesting and varied as MS and it's many treatments. However, there are lines you don't cross when you are having these debates. We all know what they are, and we should all respect other peoples boundaries. I know that I try to do this. My 16 year old son has been on two of the interferons, and is now using LDN. If someone asks me about any treatment, I do not tell "horror" stories, even though I could. I realize that everyone has different circumstances and reacts to medications differently, and I would never want to scare anyone away from any medication that might help them. I spent 6 months researching LDN before starting my son on it. I have yet to state all my reasons for doing so here in this forum, but I certainly don't owe them to someone who deems me "irresponsible" without knowing all the facts.

In the same respect, when Willy chose to blast me for having my son on LDN, his comments about the drug itself did not bother me in the least. However, when he called me "irresponsible" and asked me how I could sleep at night, I DID take offense to that. Had he have approached me and asked questions before he formed his opinion, I would have gladly answered them for him. Instead, he chose another route. So, no, I am not sorry that he has been reigned in, more or less. The same would have been done on any message board that I am a member of. I believe this would be termed "internet etiquette".

I hope that you read further before condemning this board of their decisions. I initially thought the problem was just with me, until I read through the other postings. I must admit I was relieved to find that I wasn't the only one, but I firmly believe that this constant dissection and arguing over posts takes away from the post itself, and the true messages are often lost and completely ignored. I believe this board has so much potential, and I think that the administration is simply trying to give it a chance to grow and be what it can be.

Thanks for listening! Take care...

Kim
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Postby Arron » Thu Jul 08, 2004 5:06 pm

Daunted: Sorry you feel that way-- You can please some of the people all of the time, all of the people some of the time...

The democratic system is not just a simple voting system. If someone is asked to resign, there will need to be real reasons why and that person will have to have a chance to respond. Ultimately, I am the judge of what is a valid reason and what is simple preference, and I believe I am (at least currently), rational. People don't flippantly join multiple sclerosis boards with an eye towards squeezing others they dislike out. If they do, I will put a stop to it.

The alternative is to put me in the position to ban people when I feel like it. That is how 99% of boards operate, and the conspiracy theories and hatreds run rampant under such autocracies. I'm trying to make this an enlightened place to be. If this attitude is not appreciated, we will look to alternatives- for now, I have received an overwhelmingly positive response.
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Postby HarryZ » Thu Jul 08, 2004 6:31 pm

Daunted,

As a veteran of the MS internet world who participates in 7 different MS forums at the current time, I can say that my skin is at least as thick if not thicker than Willy's.

If you go back over the past month or so, you will see that Willy and I have "slugged" it out on many different issues and Arron at one point had to advise the both of us to "cool our jets".

While Willy did have several good points to make, I feel his biggest problem was the way he treated anyone who decided to use LDN or any other alternative medicine as opposed to his beloved "FDA approved medications" for MS. He had absolutely no tolerance for anyone who supported this other point of view and did not mince his words to these other participants. Calling them "irresponsible" and "followers of quackery" certainly didn't gain him any friends...not that he wanted any!
But one can't continue to communicate in this manner on an open forum and not expect to suffer the consequences.

I found it kind of ironic when the both of us were involved in quite a disagreement and after he had thrown a few "barbs" at my integrity, I fired back. His immediate response was a threat to report me to Arron for violating the ethical codes on this forum!!! Now look at who was calling the proverbial kettle, black!!!


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Postby OddDuck » Fri Jul 09, 2004 3:52 am

I wholeheartedly support Arron in this.

I just wanted to say thank you, Arron.

Deb
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Postby Ptwo » Mon Jul 12, 2004 4:31 am

I guess I fall into the " this site will be a lesser place without Willy" camp. For all his faults he makes compelling arguments for a contrary point of view even though at times it can come down to what your definition of "it" is.

His attack on ccmom was way over the top, maybe a better approach would have been to suggest having her son try Copaxone along with the LDN so at least he is getting one drug that has been shown to help slow the progression of the disease.

I was interested to read in another thread about MillissaGA having had 2 exacerbations. She and her mother have been on many message boards telling her compelling story for several years and I'm sure have inspired many to try LDN. Is having two attacks not evidence of active disease and progression?

I myself have been going through a prolonged period without an attack (4 yrs and counting) and feel it's probably just the normal course for the disease for me, at least for now. It could be that Copaxone is doing some good but we'll never know for sure.

The only way we get an idea of if a drug may be effective or not is through the trial process with a large group of patients on placebo being compared to a large group on product. Hopefully one day soon LDN will go through that process and we will know if it's effective or not. And if it's not, will the LDN community accept those results or declare them a fraud brought on by the big pharmaceuticals.

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Postby CCmom » Mon Jul 12, 2004 5:59 am

I agree with you completely, Peter. We need the trials on LDN, we need some proof. I just know that my son is doing really well on it at this time. It has changed his whole life, and he says he feels better and more like his old self than he has in the past 3 years, since his first attack. I also know that Avonex did not work for him, and Rebif made his life so miserable that he was unable to cope from day to day.

I sincerely hope that these trials are done, soon. I'm skeptical that they will be because of the lack of profit involved, but maybe someone somewhere will push the right buttons and make it happen. Meanwhile, we have other off label drugs being used right and left with promising results, so it's very exciting.

I also agree with you in your comment that Willy did, at times, have very interesting thoughts and concerns. However, the way he chose to express these opinions should have been called into question some time ago.

I appreciate your input on this. That's what makes the world go round. I do know that people using LDN occasionally have exacerbations, but they are usually much milder than the users feel they would have been without the LDN, and are usually deemed "pseudo attacks". Of course, as with any medication, it doesn't work for everyone. I utilize 3 different message boards regarding LDN, so I've read it all at one time or another.

Hope you have a great day!

Kim
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Postby HarryZ » Mon Jul 12, 2004 7:03 am

Peter,

I too will agree with you in that clinical trials for LDN are absolutely necessary if we are to get the scientific proof required for this medication.

And yes, Willy did have some interesting points of view and good comments to contribute...but why did he find it necessary to continually write in such a manner to warrant the number of complaints that Arron received about him? He even made the comment to me that he considered himself a "cynical bastard" when it came to MS and the medications available for the disease. I somehow got the impression that he "enjoyed" writing in this kind of aggressive style but like I said earlier...if one does that on an open forum then one has to pay the consequences of what that may bring.

As for the LDN clinical trials....I was terribly disappointed and angered by the NMSS's press release about LDN a few months ago. Everyone knows about the importance of trials, especially the NMSS who always advocates trials for any medication. I could even understand their cautious approach about not supporting LDN in any way until such trials had been accomplished. But was it necessary for them to go out of their way and "damn" LDN by inferring it could do harm to patients?

If the NMSS was totally interested in helping the cause for MS, they would not have proceeded in the manner that they did with LDN but would have encouraged clinical trials in a positive manner. After all, the anecdotal evidence has been huge that LDN does "something" with this disease. Were they protecting the CRAB drugs from something that might be just as good if not better and a fraction of the cost? One starts to wonder!

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