Wow, has this forum gone everywhere lately?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Wow, has this forum gone everywhere lately?

Postby jay123 » Sat Jan 02, 2010 6:37 am

IMHO, this forum is out of control now with all the different threads on it going twenty different directions. I wonder if there is a way the admins could set it up with sub-forums for blood letting, European treatments, North American treatments, vibrating bed treatments (lol - just kidding there), etc?

I feel bad. Each day from from September thru December I read every new post, this forum was like a poor mans scientific explorer playground for CCSVI - but lately I just scan some titles and get out. There are so many posts that are so far out and just don't make sense. We've become the "braintalk" forum of CCSVI. Fo those who used to be on braintalk when it was a good forum you know what I mean. Now it's mostly (not entirely) a social network, and a hangout for a few people who seem a little over the edge.

I just worry because our CCSVI theory was based on fact, and common sense ideas that members of the medical community should have listened to and believed. As we throw out more and more 'left wing' ideas and thoughts it will allow the medical community to laugh us off as a bunch of fanatics.

I notice many of our members who posted very informative posts haven't been heard of for a while.

Oh well, maybe we need a new CCSVI forum web site with strict monitoring and many sub threads.
User avatar
jay123
Family Elder
 
Posts: 381
Joined: Mon Sep 21, 2009 2:00 pm

Advertisement

Postby Sport » Sat Jan 02, 2010 9:00 am

Jay, I couldn't agree more.
User avatar
Sport
Family Member
 
Posts: 40
Joined: Sun Jul 05, 2009 2:00 pm
Location: Midwest, USA

Postby patientx » Sat Jan 02, 2010 10:16 am

Buried in another thread, I wrote something similar, and was basically told, If you don't like, then don't read this forum and post. So, maybe for the new year, I will take that advice (starting after this post :))

By the way, this was posted recently on another MS website:

I have somewhat noticed a theme of CCSVI supporters being the types who believe in drug company conspiracies, and even that the NMSS is part of a conspiracy to put the brakes on potential MS cures.

On another forum I visit sometimes that I would call kook fringe alternative there's a woman who's talking about doing blood letting to expedite removal of Iron from her brain.
User avatar
patientx
Family Elder
 
Posts: 1068
Joined: Wed Sep 10, 2008 2:00 pm

Postby Lyon » Sat Jan 02, 2010 11:16 am

.
Last edited by Lyon on Mon Nov 21, 2011 8:07 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 2:00 pm

Postby cheerleader » Sat Jan 02, 2010 11:28 am

There are over 25 more forums on TIMS where folks can discuss the recent research in other areas. There's a lot more going on in MS- not just the CCSVI research. New drugs, stem cells, new research.

My comment to px was- if he didn't enjoy it on the CCSVI forums, to just have conversations in other places. I thought that's what you guys were doing anyway, right? PMing and all that, because CCSVI was not "your thing" or the research doesn't meet "your standards." That's fine! Or revitalize the skeptic thread on here, and talk about all the information you feel is lacking...

I think Jay's comment is more about the lack of focus we're seeing in the CCSVI forums as new posters from around the world come on and ask the same repeated questions, or don't know how to use the search function. We're trying to keep stuff organized with stickies, but it's obviously gotten a bit unwieldy. But I still see alot of old timers hanging out in other threads, and the vibe is still from the good old days.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5092
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Postby Lyon » Sat Jan 02, 2010 11:44 am

.
Last edited by Lyon on Mon Nov 21, 2011 8:06 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 2:00 pm

Postby Footballer » Sat Jan 02, 2010 11:57 am

I would like to send a big thank you to whoever is responsible for this forum. I have learned a huge amount in a very short time by reading ALL of the information here. PLEASE do not change it. Most people can distinguish between the good informational posts and the "not as helpful" posts.
User avatar
Footballer
Newbie
 
Posts: 4
Joined: Fri Jan 01, 2010 3:00 pm

Mai phen rai, cheerleader

Postby fiddler » Sat Jan 02, 2010 12:03 pm

... or "Don't worry about it" as they say in Thailand, cheerleader. Even with the off-thread discussions and chatter (and yes, lack of objectivity of some posters) this is still a great site for newbies and veteran posters alike. A summary or index of threads would be very useful, especially to newbies, but you've got enough to do - maybe someone else can take that up. I think your idea of having the skeptics thread revived is an excellent one.
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
User avatar
fiddler
Family Elder
 
Posts: 398
Joined: Wed Dec 02, 2009 3:00 pm
Location: Fredericton, Canada

Postby dialed_in » Sat Jan 02, 2010 12:04 pm

Lyon wrote:Things change and maybe the natural culmination of events is that every special interest site is doomed in the end to be nothing more than a social gathering place?

I still intend to follow CCSVI to the point that it proves itself to MY standards one way or the other but obviously discussing it at thisisms isn't an essential part of following the research.

I don't think the message has changed from the beginning, in that what had been the best part of thisisms was that it was a good place for two sided discussion has turned into an "agree or get the hell out" situation.

Obviously when only one side of an argument is presented it chases off everyone with an open mind and what is left is a big "what she said!" butt patting session, like what thisisms and the CCSVI forums has become.


I don't get it. Are you saying there are threads in here that people are bullied out of for not agreeing with CCSVI?

I haven't seen that in all of my reading here so far. Do you have any links?
User avatar
dialed_in
Family Member
 
Posts: 47
Joined: Sat Dec 19, 2009 3:00 pm

Postby tzootsi » Sat Jan 02, 2010 12:41 pm

I agree with Fiddler - yes this forum has gone off on a few tangents in the past few months, but it's still the best reading on the web. Yes it's a little frustrating when newbies who don't quite have the feel for this forum, post questions in inappropriate topics, but that's life, and I love seeing new names pop up every day.
Because less people are currently getting the procedure at this point in time, this forum is not as totally engrossing as it was back when Dake was fixing people every week. However, I think things will again pick up in the coming months as more IR's (and hopefully neuros) get into the pool.
User avatar
tzootsi
Family Elder
 
Posts: 374
Joined: Sun Nov 22, 2009 3:00 pm

Postby jay123 » Sat Jan 02, 2010 1:07 pm

I'm sorry, I did not mean this to degenerate into a thread about peoples comments, etc.
There is a room for dissenters with logical questions and comments.
On TIMS there are other threads, but no one seems to be using them from here, the CCSVI thread seems to be open territory.
Cheer, at this point it's not to many people asking questions already answered, but I do have to agree we seem to be getting to many people with fringe thoughts such as blood letting and who's going first. They didn't even get my joke when I said I heard they were going alphabetical starting with "J"!
This excellent and (to me) valid idea of CCSVI is still in it's infancy, we are still working on getting treatments, we have to be careful to not be pasted as "kook fringe" - but as people who have done research.
Lyon - I don't agree that you can't disagree here. I have questioned the theory here and been given well thought out answers which allayed the doubts I had. I am not arguing with you, but sometimes the tone of the writing in a question makes others react in the same manner. Sometimes, in my opinion, you and 'px' (and there are others) will post comments that stir passion in others replies. You know I have complimented your thoughts in some posts.
I just wish we could get this forum back to informative posts where we have intelligent discussions about CCSVI, not about vibrating beds, who is first in line (and I just remembered besides them starting with the letter "J", my wife says when I drive I always try to be 'line leader', so i should be first!), blood letting, other MS symptoms, etc.
User avatar
jay123
Family Elder
 
Posts: 381
Joined: Mon Sep 21, 2009 2:00 pm

Postby cheerleader » Sat Jan 02, 2010 1:21 pm

as far as kookie fringe...
hemochromatosis is related to ulcerations and venous insufficiency and MS- the hemochromatosis C282Y genetic mutation is found in all of these conditions-

The overlap of primary CVD and the C282Y mutation consistently increases the risk of developing venous leg ulceration. These data, which have been confirmed in other clinical settings, suggest new strategies for preventing and treating primary CVD.

http://linkinghub.elsevier.com/retrieve ... 1405005483

The C282Y mutation also shows up in MS patients.

In the present study we have investigated whether HFE gene polymorphism may play a role in the disease process of Croatian and Slovenian MS patients and their potential genetic susceptibility to MS. We genotyped 314 MS patients and 400 healthy controls for the C282Y and H63D mutations by polymerase chain reaction/restriction fragment length polymorphism (PCR-RFLP) analysis. Our results showed no significant differences in the distribution of the two mutations between MS patients and controls, suggesting that HFE polymorphisms do not contribute to the susceptibility to MS. Also, there was no significant correlation between HFE polymorphism and the disease progression index. However, we observed that MS patients carrying the mutant C282Y allele exhibited earlier onset of disease symptom relative to other genotypes, but it warrants further study in a larger series of MS patients.


http://www.ncbi.nlm.nih.gov/pubmed/15955425

and, one treatment for iron-overload, or hemochromatosis- is blood letting.

I'm just saying- we were all newbies at one point or another. And yes, things change.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5092
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Postby Lyon » Sat Jan 02, 2010 2:02 pm

.
Last edited by Lyon on Mon Nov 21, 2011 8:06 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 2:00 pm

Postby Sharon » Sat Jan 02, 2010 2:16 pm

Jay wrote
I just wish we could get this forum back to informative posts where we have intelligent discussions about CCSVI,


You are correct, Jay, we use to have more infomative discussions - I believe the reason was because new reports from Zamboni were being published, there were conferences being attended, Simka was writing, Dake was testing and treating --- there was a h*ll of a lot going on. Since the first part of December things have quieted down -- those of us who were discussing the research have already "been there, done that--don't need to go back". Cheer is doing an amazing job on Facebook -- she started posting the research again. Does she have patience or what?
Anyway, so many of us who started this journey a year ago are waiting for new information to discuss.

Sharon
User avatar
Sharon
Family Elder
 
Posts: 1239
Joined: Sun Nov 07, 2004 3:00 pm
Location: Colorado

Postby scorpion » Sat Jan 02, 2010 2:35 pm

I have had a hard time undertsanding why there needs to be a "skeptic" thread in any forum on thisisms. It seems that language creates a "you are either with us or against us" mentality. We all suffer from MS or have a loved one that has MS. I am just hoping I dont get on thisisms one day and see a forum entitlrd "the big pharma's MS conspiracy". Then I know this forum is in trouble! :lol:
User avatar
scorpion
Family Elder
 
Posts: 1323
Joined: Wed Nov 05, 2008 3:00 pm

Next

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service