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

Postby patientx » Mon Jul 20, 2009 8:09 pm

Lyon wrote:...it seems that objectivity .... has sometimes suffered recently ...


Objectivity has gone right out the window.
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Postby zap » Thu Aug 13, 2009 9:00 pm

You know, if I was feeling paranoid - perhaps from smoking some MS medication - I might be inclined to think that some of ya'll are stooges for Big Pharma.

Lyon & Scorpion, what the hell is wrong with you guys? Settle down.
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Postby notasperfectasyou » Fri Aug 14, 2009 7:41 am

Middle of the Road.....

I beleive I understand both sides of this, though no one has yet slammed me for trying to be a pill pusher.

1) We just recently had a post that is on all the MS message boards that suggests that MS has been cured in mice. This is not correct. We, including what we read and those who write much of it don't do a good job all the time with details. I was impressed that science had even figures out how to give MS to a mouse. It's another EAE study and mice have been cured of EAE a thousand times over. We should not worry that the world will ever be over run with EAE infected mice. So, we all ought to take the writing and reading with a grain of salt.

2) I go to great lengths to document and support what I have to say. It's not a necessity, but it helps keep things clear. For that, I can say I have never read a peer reviewed medical journal article that clearly and directly says MS is an autoimmune illness. They all have some form of direct, indirect or somewhat veiled language that qualifies the thinking, belief, widely thought to be pathology of the condition that generally involves the demyelination within the CNS.

3) It's a good thing to be excited about improvement. It's a lot like religion. Someone who finds God through whatever approach to worship is excited. It's a great thing for someone to find soemthing so deeply important and personal. We have issue in society when that person starts roaming the streets telling strangers that they are all going to hell, that they are sinners, etc. We have issues when we find that these public displays or efforts to protest the religious thoughts of others start to get in the way of peaceful conduct of our lives. I like TIMS because we can come here with a lot of "religions" and share the ways we are searching for "God".

4) CCSVI is different. I'm interested in it and I'm cautiously watching it. Others might feel the same about ABX. In my case I have a message to share, and despite the fact that I think everyone ought to try ABX, I know that I'd be an idiot to actually try that. We are a smart group here and when smart people start treating other smart people like dumb people, the results are poor. I've chosen to document the evidence for ABX with the thought others might one day find it compelling. It certainly is low risk and inexpensive to be on ABX. But, I'd not count out CCSVI either. Even in peer reviewed journal articles, the very first premise that precedes the entire article is an assumption. Think about that. Ken
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Postby HarryZ » Fri Aug 14, 2009 9:31 am

Ken,

First of all I would like to commend you on a very well written post.

2) I go to great lengths to document and support what I have to say. It's not a necessity, but it helps keep things clear. For that, I can say I have never read a peer reviewed medical journal article that clearly and directly says MS is an autoimmune illness. They all have some form of direct, indirect or somewhat veiled language that qualifies the thinking, belief, widely thought to be pathology of the condition that generally involves the demyelination within the CNS.


I'm glad for your comment about how peer reviewed journal MS articles never come out and state that MS is an autoimmune disease. The writers never say this because despite decades and decades of research, not one scientist has ever been able to prove that part of the puzzle for MS. It's only the non scientific articles written by regular journalists that often say "MS is an autoimmune disease of the central nervous system".

I think it was back in the 40's that some MS docs injected a dog's brain with a foreign substance, it reacted with demylinated lesions from an autoimmune response and thus was born the theory about MS being an autoimmune disease. Pretty much all the research from that point on until about 10 years ago focused solely on the autoimmune principal. Maybe that's one reason why neither a cause nor anything resembling a cure has been discovered to date.

But I fully agree with your comment about smart people calling other smart people less than flattering names...that leads to only one path and it isn't a pretty one.

Harry
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Postby Lyon » Fri Aug 14, 2009 2:18 pm

..
Last edited by Lyon on Wed Jun 22, 2011 2:05 pm, edited 1 time in total.
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Postby notasperfectasyou » Fri Aug 14, 2009 3:01 pm

You're right Bob, you're definitely not feeling well. Take some antibiotics and comeback and edit this weekend....... :D

Thanks Harry and Bob, I appreciate it.

CCSVI is different. What did I mean? Depends on what the definition of "is" is. yaknow? I'm interested in what "legitimate documentation" is. I think I know, you mean the aforementioned "peer reviewed journal articles".

I think I could write for the next hour about this, and I won't because I think I've used up my really good post for the day. But, I think we have an assessment process we go through when we see new stuff. We must each make a PERSONAL decision to accept, reject or become interested. I have taken an interest in reading about and learning more about CCSVI. That could change in the future. I became very interested in ABX when I first heard about it and perhaps responded to ABX much like Cheerleader has responded to CCSVI. I have not become interested in Andrew's inclined bed theory, but I respect his effort to share an idea enough to mention it. and, that's how I FEEL now, but that might change later too.

Fact is, we have diversity here and it's golden. If you go to other MS boards, there is nothing like the renaissance we have going on here. Lets all enjoy this place and the variety we have and respect it, like the religion's of others.

Documentation. code word for proof? FDA approved? someone did it and felt better? how about a series of videos of improved walks :wink: . When I say different, I'm talking about that it's not an NTCRAB, it's not something that your typical neurologist is ready to give you pamphlets for. Undocumented? That requires judgment.

crap, I'm writing now. dang it Lyon! Ok, so undocumented. Key word, yes it is. It's gray, very gray. If you want to be strict about it, documented should mean FDA approved. Provigil would be undocumented, I think, post the approval and tell Dignan if I'm wrong. On the flip side, I see Kim overcoming multiple MS symptoms and others have anecdotal stories about overcoming MS symptoms on ABX. given that ABX is cheap and low risk, seemed like a no brainer to me. CCSVI, if it was cheap, easy to do and relatively riskless, sure, I think we'd be on it. So then why not mess with the bed? Don't know, I'm not there yet. I guess there is a lack of info about it and I don't like to get interested unless I already see a crowd. So maybe it's a combination test that's subjective and flexible. If it quacks like a duck, has feathers like a duck and swims like a duck......

I don't know if I can directly answer your question, but we have a rapport and think you deserve the best effort I can make. If you have not seen any of my posts that make an effort to provide documentation of abx, I can put something here. But is it conclusive, of course not.

But, just remember, even the articles in the journals begin with an assumption, upon which the entirely of the rest of the article is reliant.

We must all make our own judgments as we subjectively sift through the material we share here at TIMS. While there is no certainly, we obviously are not precluded from continuing our individual discernments. blessings to all, Ken
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Postby Sharon » Fri Aug 14, 2009 3:26 pm

Ken you wrote:
Documentation. code word for proof? FDA approved? someone did it and felt better? how about a series of videos of improved walks


At the request of Dr. Dake, I have a video of me walking one hour before I was admitted to pre-op. I am now a little over two months from the surgery. A new video will be taken in the next week or so. I think I am walking better, but maybe that is my "placebo pill". Maybe a picture will be worth a thousand words!

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Postby Lyon » Fri Aug 14, 2009 4:30 pm

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Postby questor » Fri Aug 14, 2009 4:38 pm

Sharon wrote:At the request of Dr. Dake, I have a video of me walking one hour before I was admitted to pre-op. I am now a little over two months from the surgery. A new video will be taken in the next week or so. I think I am walking better, but maybe that is my "placebo pill". Maybe a picture will be worth a thousand words!


Sharon, with all due respect, walking ability and disability related to MS can be highly variable even when measured for the same individual within the same day. I'm not sure how useful such a video would be as objective evidence, not because of the subjective or placebo element, but because of the high degree of variability. My walking ability varies greatly throughout the day, depending on a number of factors, some of which I think I understand, and many that are truly a mystery to me.

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Postby scorpion » Fri Aug 14, 2009 6:05 pm

I am not sure why Zap I need to settle down. Honestly I have a lot of respect for the knowledge and passion displayed in this forum by the many people who commonly post here. I have a strong belief that stem cells will be the key to repair but I do not encourage people to run to Germany and get a transplant because I am not sure it is safe or effective yet. I do post stem cell advances that I think are interesting but that is all. I do not post phone numbers to call, doctors to contact, or online videos of people walking better. Everyone admits that CCSVI is not proven yet people on this forum made a point to "get the word out".I feel that new people diagnosed with the disease come to this site for information, which is awesome, but to be fair to them they should receive information that is validated by research not personal hope or belief. I think we owe it to all the newbies here seeking information. When I was first diagnosed I came to this site and I was greeted with the link "Chrishadms". You guys educated me on how complicated this disease really is which I thank everyone for but initially I was convinced revimmune was a cure. I do not want others to be as disappointed as I was when I found out "Chrishadms" was one persons wishful thinking(I hope this does not sound disrespectful because I truly admire Chris's courage).
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Postby Sharon » Fri Aug 14, 2009 7:08 pm

questor you wrote
Sharon, with all due respect, walking ability and disability related to MS can be highly variable even when measured for the same individual within the same day. I'm not sure how useful such a video would be as objective evidence, not because of the subjective or placebo element, but because of the high degree of variability. My walking ability varies greatly throughout the day, depending on a number of factors, some of which I think I understand, and many that are truly a mystery to me.

I could not agree with you more. My walking ability can change from one room to another. I think we all have an inate realization when things are getting progressively worse or better. Prior to the procedure, I knew that my walking was getting worse - my family did not see it---but, I felt it. Two videos in a three month period of time are not going to be objective evidence to anyone including Dake. But maybe over time, ten or fifteen videos will begin to tell a story. My expectation is the videos show no more disability -- my hope is that they show improvement.

It is like an EDSS score - one day (maybe even one hour) your neurologist could score you at 3.5 in the morning- do the same test over in the afternoon and it is probably going to be a 4.0. Yet, they use the EDSS scores to measure the success and/or failure of therapies.

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Postby robbie » Fri Aug 14, 2009 7:58 pm

Yet, they use the EDSS scores to measure the success and/or failure of therapies.

more so to show how your ms has progressed.
Had ms for over 19 years now.
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Postby Lyon » Fri Aug 14, 2009 8:02 pm

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Postby HarryZ » Fri Aug 14, 2009 8:35 pm

Bob,

Some people may think that Harry has outlived his usefulness only because the earth was still molten when he was young, but my parents taught me to respect my elders and for that reason I hold untold fathoms of respect for Harry. Partly due to his advanced age he is one of many who can attest to the MS "elifino" effect in which MS can, for no understandable reason, go into remission for many years. What put it into remission? A trauma, medical operation, something you ate?? Elifino.


The earth was NOT molten when I was young...it was covered in glaciers...please get your facts straight

:D

But yes, I've been following MS since I was 14 and now I'm 60. And other than seeing an improvement in the treatment of symptoms, I don't see much else in the way of any major breakthroughs. And because of the relapse/remission nature of this lousy disease, trying to prove anything conclusive has been very elusive!!

Harry
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Postby notasperfectasyou » Fri Aug 14, 2009 10:31 pm

Ok, I gotta go back and re-read, but quick impression first.

Bobbie....

So I know y'all did the Tovaxin thing, like we're doing the ABX thing. Given that we now have verified our mutual understanding that no one really knows crap about MS, I think it's safe to assume you like I engaged in some discernment doing the best you could when you decided that Tovaxin was the thing to try.

Better to have tried and tried again, than to have sat around waiting. Please keep trying Bobbie, sitting around here pissing and moaning ain't exactly befitting a man of your eloquence.

Ken
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