THE VOICE OF MANY!

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby Arron » Mon Oct 11, 2004 12:23 pm

We are all fighting the same forsaken disease, not each other.

Byron, I will not respond to such posts publicly. Check your private mail.

To the rest of the group: In short, Byron is a valuable contributor to this site, having administered and witnessed a novel therapeutic approach that seems to have worked. This is very important work for our community.

My belief is he needs to acknowledge the dual issues of safety and the fact that antibiotics may not work for everyone. I hope he will continue to post here and that the rest of our research team can co-exist with him.

[EDIT] I had not noticed the name-calling when I first posted this. Remember I am one person monitoring this board and I cannot be all places at all times. Therefore, allow me to amend what I said by clearly stating that

Calling people names or being blatantly rude will be unacceptable for *all* parties for the obvious good of our community. As much of this is a judgment call, the rules are clear as to how this is addressed and I advise you all read them. Last warning.
[/EDIT]

Again, we are all fighting the same forsaken disease, not each other.
Last edited by Arron on Mon Oct 11, 2004 12:51 pm, edited 2 times in total.
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Postby Felly » Mon Oct 11, 2004 12:29 pm

So it is fine for him to be rude, to make statements about people who claim to have MS and finally to call us nutters.

Ok, well this really is the final post from me and I do want everything I have written removed.

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Postby Arron » Mon Oct 11, 2004 1:06 pm

Ugh!

Felly, this is a non-profit community with VERY limited resources. If people would like to help moderate, great-- but so far I am a one-man show on this board. I can't keep up with every word, intonation, insult, or assualt. Quite frankly, I have not analyzed the entire antibiotic thread and am clearly missing large portions of what is antagonizing you. Despite what is in the rules of the board, not one person has pointed out to me in a private message what the issues are.

Please cut me some slack! We are very clear about name-calling, blatant rudeness, etc., but much of moderating a forum is clearly shades of grey.

We're not here to argue. I hope you can all recognize the tremendous contributions you make to our community-- I certainly do-- and I hope that you can get beyond this issue. It is a waste of time and effort that could be better spent with your minds attacking the true problem.

I think we can all agree that this is a very logical, rational, and fair site comprised of some of the most intelligent posters you will come across. Conflicts of personality are inevitable, and if I have not been able to do a good enough job making sure lines are not crossed, accept my apologies but do not punish the community because of a personal fight.

We are on the same side.

If you still want to leave, well then I'm sorry and I hope you will take a breather, realize what a great thing we have going here, and return soon. This is a not-for-profit, and the entire purpose of this site is to help the multiple sclerosis community-- so asking for us to delete your postings is both unnecessarily onerous (reference fact that I am ONE person working the forum) and punishing an innocent community for no good reason (you are well aware that this site does not sponsor or condone rudeness as you seem to be accusing). As yet another demonstration of our fairness, I will, however, do it in reasonable time if you so wish.

Sigh...
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Postby SarahLonglands » Mon Oct 11, 2004 1:52 pm

As Arron says, we are all fighting the same forsaken disease, most of us for ourselves and some such as Byron and Philip for someone else very dear to them. This is a wonderful site, so let us all get on together, please! Both Felly and Byron would be great losses, not to mention Finn et al, so let's please stop all this and be friends.

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People with MS are SMART

Postby Shayk » Mon Oct 11, 2004 1:57 pm

All of this really bothers me, so, as is my approach, someone has always said it better and here's a quote from the MS Diet Book by Swank and Dugan. It's very dated (1987), and undoubtedly not a double blind placebo controlled trial :), but I think it describes many of us. It's the first paragraph under the heading, personal characteristics of people with MS.

With few exceptions MS patients before becoming disabled are active, energetic, and highly productive. Generally they are intelligent and vital individuals. Physically they are of average height and weight, and athletic in build and inclination. They are usually attractive. They are nervous (tense) and perceptive. As the disease progresses, the "inbuilt" nervous tension increases and they become irritable. They rarely lose their inclination to work and produce unless severely disabled. In general, they become very well informed about their disease through reading and discussions with one another. It is, therefore, very difficult if not impossible to keep information concerning their disease from them. These characteristics are so frequently observed in the MS patient that their absence in the early phase of the disease should cause one to reexamine the history for clues to another diagnosis.


I sincerely hope we all continue to put our individual experiences, intelligence and collectively "informed" knowledge and research to work so we can put MS behind us for good!

(And, BTW, for those of you haven't checked it out yet, the Swank Diet doesn't appear to be as bad as I'd imagined. :) . )

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Postby finn » Mon Oct 11, 2004 2:55 pm

Sorry, time to leave the board.

-finn
Last edited by finn on Sun Aug 28, 2005 1:52 pm, edited 1 time in total.
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Postby HarryZ » Mon Oct 11, 2004 5:47 pm

Finn and all,

As you are aware, I have not participated in this particular thread and it only got my real attention when the conversation became "rather heated".

Unfortunately this kind of situation happens on almost every single MS forum that I participate and at the moment, that is about 10 of them. Sometimes emotions run high, certain comments are made and before you know it, the entire perspective of what we are all here for becomes lost.

Aaron does a good a job as possible in trying to monitor all the posts but keeping a tab on everything is all but impossible.

Perhaps some cooling down time is needed by some of the participants. At the same time, leaving the forum in protest over a particular incident isn't the answer. I can assure you that you will run into a similar situation whatever MS forum you decide to join and follow.

So please, let's take a deep breath and all continue to contribute. I can assure you that the posts on this forum are among the best that I follow when it comes to really getting valuable information about MS and its current and possible future treatments.

Harry
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The Voice of Many?

Postby SarahLonglands » Tue Oct 12, 2004 2:47 am

Well said, Harry,

I might also add that this thread was started by Treez and entitled "The Voice of Many!" It seemed to have degenerated somewhat and rather ironically, into "The Tower of Babel", so perhaps we can now revert to its original aim?

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Postby finn » Tue Oct 12, 2004 5:24 am

Sorry, time to leave the board.

-finn
Last edited by finn on Sun Aug 28, 2005 1:53 pm, edited 1 time in total.
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Postby HarryZ » Tue Oct 12, 2004 6:20 am

Finn,

also believe that the amount of pseudo science and layman theories around it is one reason why most researchers don't want to study LDN, and I'd hate to see the same thing happen to minocycline. It is not a miracle drug, but it seems to be too good to be wasted.


The internet, of course, is filled with tons of junk and the many theories that exist about the cause of MS is part of it. But researchers of any quality know the difference between fact and fiction.

I believe the main reason that LDN isn't part of any major research as yet has everything to do with financial reasons and not with anything that is posted on the internet. There are some individual neuros who are looking at pilot LDN trials and the Consortium who are looking at something a bit larger. Dr. Bihari, owning the utility patent on LDN, also can inhibit any large interest in this drug because he can have a final say in the research as it applies to MS.

Add to this the influence of the CRAB pharmas (especially on the NMSS) and you can see why very little has happened to date when it comes to LDN trials.

I know how the NMSS can torpedo anything they don't agree with when it comes to MS research and as we all know, they have initially torpedoed LDN with their infamous press release.

Hopefully, over time, science will win out over finance but we know what a terribly slow process that can be.

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Just an interjection here

Postby katie45 » Tue Oct 26, 2004 11:21 pm

I have to agree that some of these controlled studies don't look extremely promising, but from the samples that I've read about, a major factor has been the drop-out rate of partcipants. I can fully understand this happening as the early stages of abx therapy can be nothing less than brutal! I can see not only the participants running but the researchers looking at this effect on patients and having them withdraw.Drs do not care for the prospect of inflicting what initially looks like more damage. (they're not thrilled about lawsuits either) It has been my opinion since I first was hit with this that the medical machine is afraid of heights.
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Postby katie45 » Tue Oct 26, 2004 11:29 pm

oops...this reply was meant for the abx topic about 3 pages ago!
Don't hit please....I'm new
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