The "personal experience" mentality

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

The "personal experience" mentality

Postby CCSVIhusband » Mon Nov 15, 2010 7:31 am

Since the skeptics have their own thread going on about how and why they are critical of CCSVI ... I figure it's time for the people with personal experience to have their own thread.

Though this is started tongue in cheek ... I think it's important, because I don't think the "skeptics" understand that what they term as "believers" are believers for a reason.


The first thing I'd like to point out is ...
WE HAVE PERSONAL EXPERIENCE WITH CCSVI.
IF WE SAY, WE HAD RESULTS IMMEDIATELY AFTER LIBERATION THAT HADN'T BEEN PRESENT FOR DAYS/MONTHS/YEARS BEFORE LIBERATION ... THEY ARE REAL.
YOU CAN'T ARGUE IT BECAUSE YOU HAVE NO PERSONAL EXPERIENCE TO VALIDATE THE CLAIMS, AND YOU CAN'T WALK A MILE IN OUR SHOES.

As more and more people make the same kind of claims, don't you think they'd catch on and say ... wow, that's so many people and YouTube videos showing the same thing ... there might really be something to this!?!

Oh well ... laggers will be at the back of the line when everyone wants liberation someday soon.

OK, my feistiness is gone for the day now.



:lol:
User avatar
CCSVIhusband
Family Elder
 
Posts: 474
Joined: Sun Jun 27, 2010 2:00 pm
Location: Pittsburgh, PA USA

Advertisement

Postby CCSVIhusband » Mon Nov 15, 2010 8:47 am

User avatar
CCSVIhusband
Family Elder
 
Posts: 474
Joined: Sun Jun 27, 2010 2:00 pm
Location: Pittsburgh, PA USA

Postby CCSVIhusband » Mon Nov 15, 2010 8:48 am

http://news.scotsman.com/news/New-proce ... 6626119.jp

2 people with experience (wait, they're not from the same country, they couldn't have worked together, how did they get similar results)
User avatar
CCSVIhusband
Family Elder
 
Posts: 474
Joined: Sun Jun 27, 2010 2:00 pm
Location: Pittsburgh, PA USA

Postby CCSVIhusband » Mon Nov 15, 2010 8:52 am

http://www.globalregina.com/Liberation+ ... story.html

hmmmm ... this is all very suspicious. :twisted:
User avatar
CCSVIhusband
Family Elder
 
Posts: 474
Joined: Sun Jun 27, 2010 2:00 pm
Location: Pittsburgh, PA USA

Postby cah » Mon Nov 15, 2010 9:36 am

Sometimes I think I have a split personality, one could post here, the other one on the sceptics thread. :lol:

I don't think there's such a thing like "healthy scepticism". Scepticism is an absolute way of thinking. Either you question things (scientifically), or you don't. Questioning things "a bit" (again, scientifically) is like being slightly pregnant.
On the other hand, what's considered healthy is very relative, consisting of comparison, common sense and average. So, if you say you're scepticism is healthy, it's like saying "I'm relatively absolute.". :)

A much more precise picture is that there are two conflicting opinions in my mind existing side by side. While I understand the importance of strict scientifical approaches, I also see the many personal experiences that are compelling to me.

The only way out of this dilemma is to draw the conclusion that it's futile to think in terms of a general "right" or "wrong". Each case is different and every decision must be made individually.

But what derives from that is the understanding that it is plain wrong to judge another one's decision.
"There is only one good, knowledge, and one evil, ignorance." Socrates
User avatar
cah
Family Elder
 
Posts: 336
Joined: Tue Oct 27, 2009 3:00 pm
Location: Germany

Postby 1eye » Mon Nov 15, 2010 9:47 am

*Some*body around here said:

"YOU CAN'T ARGUE IT BECAUSE YOU HAVE NO PERSONAL EXPERIENCE TO VALIDATE THE CLAIMS, AND YOU CAN'T WALK A MILE IN OUR SHOES."

What about a wheelchair? I'm a size 11. I think that people can (and do!) argue plenty about stuff they have no personal experience with, or else lawmakers could never outlaw murder...

"I'm an American, and I don't have to see something to know it's stupid." -Tom Smothers

"If I had a million dollars, I'd be rich." -Barenaked Ladies
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
User avatar
1eye
Family Elder
 
Posts: 3001
Joined: Wed Mar 17, 2010 3:00 pm
Location: Kanata, Ontario, Canada

Postby concerned » Mon Nov 15, 2010 10:11 am

concerned
 

Postby CCSVIhusband » Mon Nov 15, 2010 10:16 am

User avatar
CCSVIhusband
Family Elder
 
Posts: 474
Joined: Sun Jun 27, 2010 2:00 pm
Location: Pittsburgh, PA USA

Postby CCSVIhusband » Mon Nov 15, 2010 10:17 am




I can't see these at work ... but I'm "skeptical" of their results ...
User avatar
CCSVIhusband
Family Elder
 
Posts: 474
Joined: Sun Jun 27, 2010 2:00 pm
Location: Pittsburgh, PA USA

Postby concerned » Mon Nov 15, 2010 10:17 am

concerned
 

Postby CureIous » Mon Nov 15, 2010 1:34 pm

cah wrote:Sometimes I think I have a split personality, one could post here, the other one on the sceptics thread. :lol:

I don't think there's such a thing like "healthy scepticism". Scepticism is an absolute way of thinking. Either you question things (scientifically), or you don't. Questioning things "a bit" (again, scientifically) is like being slightly pregnant.
On the other hand, what's considered healthy is very relative, consisting of comparison, common sense and average. So, if you say you're scepticism is healthy, it's like saying "I'm relatively absolute.". :)

A much more precise picture is that there are two conflicting opinions in my mind existing side by side. While I understand the importance of strict scientifical approaches, I also see the many personal experiences that are compelling to me.

The only way out of this dilemma is to draw the conclusion that it's futile to think in terms of a general "right" or "wrong". Each case is different and every decision must be made individually.

But what derives from that is the understanding that it is plain wrong to judge another one's decision.


Bingo.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
User avatar
CureIous
Family Elder
 
Posts: 1210
Joined: Tue Jul 14, 2009 2:00 pm
Location: Riverside, CA

Postby jimmylegs » Mon Nov 15, 2010 3:14 pm

look people, we don't have to keep on pushing 'sides'.

TIMS members are here for themselves and/or for loved ones and all are equally welcome, even though their personal experience of MS may be as a caregiver rather than a patient. can anyone here imagine someone giving cheer a hard time because she has no personal experience of ms?

our members have different attitudes regarding this new technology for treating MS. and that is exactly as it should be. please show respect for the contributions of other members. we are pleased to see both the good news stories and sorry to hear the bad news stories but all have merit. TIMS is an unbiased site and therefore we would be failing in our mission without a diversity of perspectives.

Reposted:
Adopter categories

Innovators
Innovators are the first individuals to adopt an innovation... Risk tolerance has them adopting technologies which may ultimately fail.

Early Adopters
This is the second fastest category of individuals who adopt an innovation. More discreet in adoption choices than innovators.

Early Majority
Individuals in this category adopt an innovation after a varying degree of time. This time of adoption is significantly longer than the innovators and early adopters.

Late Majority
Individuals in this category will adopt an innovation after the average member of the society. These individuals approach an innovation with a high degree of skepticism and after the majority of society has adopted the innovation.

Laggards
Individuals in this category are the last to adopt an innovation... These individuals typically have an aversion to change-agents and tend to be advanced in age.
Last edited by jimmylegs on Mon Nov 15, 2010 5:01 pm, edited 1 time in total.
jimmylegs
Volunteer Moderator
 
Posts: 9156
Joined: Sat Mar 11, 2006 3:00 pm

Postive Experience

Postby MarkW » Mon Nov 15, 2010 3:23 pm

I have a postive personal experience with balloon venoplasty. My study informs me that I undertook minimal risks in seeking this procedure.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
User avatar
MarkW
Family Elder
 
Posts: 1151
Joined: Thu Oct 19, 2006 2:00 pm
Location: Oxfordshire, England

Postby Cece » Mon Nov 15, 2010 4:31 pm

I now have the personal experience of undergoing a doppler ultrasound examination and an MRV. Both showed signs of CCSVI. I look forward to the personal experience of venoplasty and, hopefully, the personal experience of feeling better. 8)

I think clinical observations are a step up from anecdotes but a step down from research trials. We have a number of respected, intelligent CCSVI doctors who have made and shared their clinical observations.
Cece
Family Elder
 
Posts: 9054
Joined: Mon Jan 04, 2010 3:00 pm

Postby dreddk » Mon Nov 15, 2010 5:07 pm

Okay, I'm not posting this to stir but I think we have to understand why the neurologists at large are not yet convinced of the efficacy of ccsvi treatment.

Anecdotal evidence is interesting but from a scientific point of view doesn't prove anything http://theness.com/neurologicablog/?p=174

From personal experience, my wife when she started Tysabri felt more energised and had no relapses for 12 months. The only niggle was an allergic reaction when she received it. We sung the praises of tysabri as she had never been better. Our neurologist at 12 months ordered an antibodies test and it transpired she had antibodies to tysabri and had most likely received no benefit at all from day one. Such is the difficulty with MS in taking personal experience as proof.

Irrespective, I don't think we are far away from hard proof. We appear to have some solid evidence showing CCSVI exists. Hopefully controlled studies of treatment will show the breakthrough we all want to see.
User avatar
dreddk
Family Elder
 
Posts: 131
Joined: Sat Jan 20, 2007 3:00 pm
Location: South Pacific

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