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Posted: Sun Aug 28, 2005 11:30 pm
by finn
Reed,

sarcasm is difficult to use and to understand. Arron wrote that "no one here is a medical doctor, nor claims to be." But now in her message the British M.A. underlines that his husband is a "fully qualified Medical Doctor". Well, it is not enough to convince me. I still have my doubts about how well he understands different aspects of MS.

Anyway, this discussion board is definitely too biased now, and I don't want to be connected with this kind of activity. That is why I removed all my previous posts, and won't post anymore.

Take care.

-finn

Posted: Mon Aug 29, 2005 12:30 am
by Arron
this site is definitely too biased now
This claim is interesting. Therapeutic options discussed in this forum *this weekend* included Kv1.3 inhibitors, immunoadsorption, Betaseron, Tovaxin, low dose naltrexone, Copaxone, Omega-3's, statins, and yes, antibiotics. In plaintive honesty, this seems like quite the variety for a so-called "biased" board.

I have no interest in participating in this artificial drama. Our enemy is MS and not each other. It seems every few months we *grow* through another round of this type of situation. We are all adults here, and we are all interested in discovering means of eliminating MS. I will do my best at reigning in unbridled enthusiasm, since it's quite likely that there are likely many varieties of MS, and one therapy will most likely not work across all of them. Likewise, any therapy that is not approved in a clinical trial setting should be considered experimental and potentially harmful to one's health, requiring the supervision, if not outright support, of a licensed medical doctor. Beyond that... did I mention we are all adults here?

Finn, you know I have nothing but respect for you, your participation, your extensive knowledge, and your personal journey. Thanks for being here for the time you were, and the door is certainly always open should you choose to return. I must say I see a great deal of hypocricy in your decision to remove your posts, a decision which seems counter to your ideal of helping people with MS take advantage of your acquired knowledge. Such decisions both confound and pain me, as members including me and you, have dedicated hundreds of hours of our lives to help create a useful resource for people affected by MS to empower themselves. When infighting damages that resource in any way, it is extremely counterproductive.

Take good care of yourself,
-arron

Posted: Mon Aug 29, 2005 4:59 am
by Katman
Dear Aaron

We have an opening in the Supreme Court. Are you interested?

Katman

Posted: Mon Aug 29, 2005 6:24 am
by HarryZ
Katman,
Katman wrote:Dear Aaron

We have an opening in the Supreme Court. Are you interested?

Katman
I'm going to respectfully ask that you refrain from submitting Arron's name as a Supreme Court nomination. Should he be successful, there is no way on earth that he would have time to monitor this forum and I can't imagine us letting that happen at this time :D

Take care.

Harry

Posted: Mon Aug 29, 2005 7:09 am
by Katman
Right again! Whatever was I thinking? We need him more right where he is.

Katman

Posted: Mon Aug 29, 2005 10:12 am
by Melody
Well I'm SHOCKED by all of this. 8O 8O 8O 8O 8O




I thought AARON was a guy. :lol: :lol: :lol:

Posted: Mon Aug 29, 2005 10:15 am
by Melody
:oops: I see it was the British M.A. that was a women. What is an M.A :?: :?:

Posted: Mon Aug 29, 2005 10:39 am
by Arron
HE is :) the "British M.A." is Anecdote. LOL

Posted: Mon Aug 29, 2005 11:42 am
by raven
M.A. = Master of Arts. It's an academic qualification in the u.k.

We start off with the university degree which entitles you to either B.Sc or B.A. Bachelor of science or bachelor of arts depending upon whether your degree was in the arts, history, english etc. or in science, physics math etc.

Further postgraduate studies move you to M.A. or M.Sc.

Finally you move on to the doctorate which entitles you to PHD or Doctor of philosophy. Science and the arts appear to merge at that point...

Robin

Posted: Mon Aug 29, 2005 11:49 am
by Anje
Arron

I believe that Finn's first language is not English so to find this so funny Arron is pretty nasty.

As for the rest of you with your comments on this thread, it is a good example of bullying group behaviour - classic school stuff even down to sucking up to the adminstrator and the group leaders by posting comments against Finn.

My problem is everytime someone questions antibiotics as a therapy they are shut down. The same was done with Bromley and other people that have dared to question the status quo.

I have followed this forum for months and I too am completely fed up with the antibiotic bias. If you don't think people are promoting and encouraging use of antibiotics then you are not reading the same posts.

Just read some of the posts where forum members are recommending dosages and accounting and diagnosing for symptoms as herx reactions (there is no way of knowing this from across the internet) or possible relaspes as either pseudo or down to the antibiotics.

With regards to the people with RRMS yes they are likely to get better -that is the nature of the condition. This is no indication that antibiotics are working and it is cruel to put forward such a belief without substance.

And there is no substance just a bunch of people providing 'evidence' that apart from with one person is far from convincing. Great that it has worked for Sarah not good that people are trying to convince others that whatever symptons they have on the antibioitics- they are down the the antibiotics. What if this precludes someone going for treatment? What if it doesn't have anything to do with the antibiotics? What if someone dies?

Would you take this as gospel if it wasn't for the involvement of a doctor?


I have no problems with the forum providing space for discussion about antibiotics and debate but anytime there is debate it is shut down with an onslaught from a few users of antibiotics - that you Arron then support. And this does add validity.

The point Finn was trying to make, I think, is that if you have Doctors giving advice, be it through their wife/husband/brother/sister etc (and yes there have been posts of this nature) then you will find people will be pesuaded but this does not mean they are making informed decisions.

As for Daunted's comments to Sharon - actually you will find people post just about everywhere about antibiotics so it is very hard to ignore.

Grow up -if you have to laugh at the expense of someone or feel better about yourself by posting such comments then you are surely in the wrong place.

Anje

Posted: Mon Aug 29, 2005 12:01 pm
by Arron
Anje, welcome to the site. To be clear, I'm laughing at Melody's comments wondering whether I was a guy or a girl. If I don't find *that* funny, I will need to resort to medications.

I'm in California and I stayed up until 03:30AM last night responding to Finn's and other's comments regarding this topic. Please don't come here and question the seriousness with which we treat such issues.

Finn was one of the founding members of ThisIsMS , even writing some fabulous articles. He will always hold a place of great importance here.

Posted: Mon Aug 29, 2005 12:04 pm
by raven
Sorry Anje. I have to take issue with your comments. The general discussion forum is an open forum for people to post their issues and to try and help others. However it is made plain here that none of us are doctors or qualified to give advice. I have no doubt of the sincerity of David Wheldon or his wife Sarah. I have met David and what comes across most is his desire to help those with MS. Likewise I have no doubt that Ashton Embury is sincere in his belief that diet will change the course of the disease.

As rational human beings it is our duty to read the information presented and decide for ourselves whether we wish to believe in the conclusions.

No-one is laughing here. MS is a dreadful disease which we all contend with in our own way. All that Aaron has done is to provide a space where those of us who are afflicted with MS can get together and share our experience. I for one, am grateful for that opportunity. If there is any bias it does not come from Aaron but from those who post. That is democracy at work. By all means argue with those who post. Refute their conclusions with your own, but do not accuse the person who has made the forum available of bias.

Robin

Posted: Mon Aug 29, 2005 12:10 pm
by Arron
Thank you, Raven, I appreciate that.

To be clear, I am not dismissing Finn et al's comments.

Let me reiterate for the 80th time:

*Antibiotics, like LDN, Prokarin, Diet, etc., are an UNPROVEN therapy.

*Antibiotics, like any unapproved, physiology-altering medication, can be VERY DANGEROUS to your long and short-term health.

*Antibiotics are NOT TO BE ADVISED AS A SUBSTITUTE for approved therapy WITHOUT EXTENSIVE CONSULTATIONS WITH A LOCAL DOCTOR.

*Dr. Wheldon's credentials are now well-known, but given the state of tele-medicine, he obviously cannot (and would not want to) substitute for your LOCAL DOCTOR. Neither can Sriram et. al.

*For all of the above reasons, antibiotics should only be pursued by well-informed MS'ers INVOLVING THEIR OWN DOCTORS and WILLING TO ACCEPT UNKNOWN AND POTENTIALLY SERIOUS ADVERSE RISKS.

You have been advised, warned, warned again, and advised again. This is an internet bulletin board, people. I could come on here and claim to be anyone or anything, e.g., the Surgeon General of the United States-- it doesn't mean you should listen to me without talking to your doctor first. And quite frankly, I expect that everyone understands that.

It seems there is a growing sense of self-importance here and I want to put a stop to it now. This site is an INFORMATIONAL TOOL, PERIOD and NEVER claims to be anything but. If you use it for something other than its intended purpose, then you are ON YOUR OWN. Your health is at risk with any decision you make that does not involve the intimate involvement of YOUR LOCAL medical professional.

I will continue operating under the premise that members are discussing all of their health decisions with their own doctor. To assume otherwise is insulting to the vast majority of our members (not to mention against every disclaimer on this and every other medical-related site), and I am not very interested in dumbing-down this very intelligent forum in a doomed attempt to assume an internet-based parental role for grown adults.

If you disagree, please drop me a line, let me know how things can improve, and if you would like to leave, we're sorry to see you go. Each of our 2000+ members is important, but I volunteer my time here and cannot preside over an artificial firestorm day in and day out.

Enough.

Posted: Mon Aug 29, 2005 3:06 pm
by Melody
Anje wrote:Arron

I believe that Finn's first language is not English so to find this so funny



My problem is everytime someone questions antibiotics as a therapy they are shut down. The same was done with Bromley and other people that have dared to question the status quo.




Anje
Finn's English seems fine if it was not he would hardly voice an opinion which he is entitled to and I appreciate. As to your next comment I resent it. I actually don't agree with anti -biotics I am more pobiotic but no one ever attacked me when I voiced that opinion. The first time I've felt chastised so to speak is by you even though you did not pick on me per say. I find this site totally un-biased. I don't agree with anti biotics so I don't hang out on that thread. There are other threads that are of an interest to me. I'm here for hubby enough said.

Posted: Tue Aug 30, 2005 6:34 am
by BioDocFL
Gee, this is just like last year at this time when I joined. A discussion on the effectiveness of antibiotics got a little heated. So I piped in about something different and we went off in that direction for a while.
I'll try again but with a totally new topic I haven't seen discussed here yet, although I haven't been paying much attention to all the discussions over the past 9 months.
Has there been any discussion on this forum about LINE L1 retrotransposition in neuronal precursors? There was a paper out in Nature (June 16, Muotri, et al., vol. 435 p:903 "Somatic mosaicism in neuronal precursor cells mediated by L1 retrotransposition"). There seems to be some dispute over its validity but it could be an interesting concept. Jumping genes in neuronal precursors could lead to somatic mosaicism seen later in diseases of the brain.
Is it worth starting a new thread?

Wesley