Liberation or Placebo Effect (article)

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
Family Elder
Posts: 6061
Joined: Wed May 03, 2006 2:00 pm

Post by Lyon » Sat May 22, 2010 7:48 am

Last edited by Lyon on Mon Nov 21, 2011 3:10 pm, edited 1 time in total.

User avatar
Family Elder
Posts: 849
Joined: Sun Dec 13, 2009 3:00 pm
Location: Canada

Post by PCakes » Sat May 22, 2010 8:00 am

Please stop feeding they who thrive on the destruction of informative topics...

User avatar
Family Elder
Posts: 249
Joined: Sun Jan 24, 2010 3:00 pm
Location: Pittsburgh, PA, USA

Post by mshusband » Sat May 22, 2010 8:38 am

I agree. I thought this topic had finally hit a stride (with reasonable discussion and everything) and it goes back to attacks and nothing good happens then.

Which is what the opposition wants, FUD. So LumpC1 you're just as bad as them in my opinion in that you're encouraging that and getting us off topic.

User avatar
Volunteer Moderator
Posts: 11819
Joined: Sat Mar 11, 2006 3:00 pm
Been thanked: 4 times

Post by jimmylegs » Sat May 22, 2010 1:20 pm

lumpc, not an acceptable post. lyon, not an acceptable response.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!


Post by malden » Tue May 25, 2010 12:54 pm

cheerleader wrote:Trish--screw the scientific facts....I'm cashing in! You'll be happy to know that Dr. Embry and I will be coming to your town soon, in the Vitamin D Mobile (solar-powered, of course!) We will be offering our proprietary blend of endothelial-strengthening herbs and vitamin D supplements for a low, low introductory price--only to MS patients!

But wait, there's more! For an additional $19.95, I will include an autographed copy of "It's Never in Vein"...the true story of Cheerleader. (There is even a bonus CD included) Dr. Embry will be speaking about his new position as the official spokesperson for sunshine. He'd better be asking for a "rays" soon!

I've seen the light. Thanks to all of the very smart men on TIMS for learnin' me!
Is this advertising/selling allowed here on TIMS?? ;)

Last edited by malden on Tue May 25, 2010 8:40 pm, edited 1 time in total.

User avatar
Family Elder
Posts: 173
Joined: Wed Jan 20, 2010 3:00 pm
Location: Portland, OR

Post by FlashHack » Tue May 25, 2010 1:03 pm

No, but sarcasm obviously is!

User avatar
Family Elder
Posts: 339
Joined: Mon Mar 01, 2010 3:00 pm
Location: Chicagoland

Post by BooBear » Wed May 26, 2010 3:21 am

Yes, you are reading correctly- I agree with Lyon and Scorpion- to a point.

I do want solid, closely scrutinized clinical trials. I feel CCSVI deserves at least what medicinal trials get all the time. I know- I am participating in a medicinal trial right now. I get blood tests every month, MRIs every six months, I keep a diary and have to track every symptom, additional medicene, etc. that goes on with me. I feel we need the same with CCSVI- structured tests, close patient monitoring and solid results.

I have not had a relapse in a year; however, my last MRI (taken three months ago) indicates two new areas of activity that were not there six months prior. RRMS does wax and wane; however, how much damage is really occurring in our brains in between relapses? Most of us are not getting MRIs done as frequently as I am right now, so it would be hard to tell.

I agree with mshusband- if I have a blood flow issue to an organ as critical as my brain, I would like it repaired, please. It can't be a good thing.

If the arguement is that we cannot credit every benefit the Liberation treatment offers- despite how astonishing some of those benefits have been for our brethren- without solid clinical evidence, fair enough; at the same time, how can we attribute every benefit that these people have had to a placebo effect without the same evidence?

I don't feel that it is right for doctors willing to perform the procedure to be shut down, nor do I feel it is right that funding is tight in what may be a life-changing event for all of us. If it has the potential to be a significant revelation in the treatment of this disease, it should be full steam ahead for all of us. We simply do not have the luxury of time- as my latest MRI showed.
Three veins angioplastied.  One renewed life.  

User avatar
Family Elder
Posts: 224
Joined: Thu Dec 31, 2009 3:00 pm
Location: UK

Post by AMcG » Wed May 26, 2010 3:52 am

Spot-on Boo. A very balanced point of view.

Post Reply
  • Similar Topics
    Last post