Okay, first the shameless self-promotion. Wheelchair Kamikaze has been selected as a finalist for medgadget.com's 2010 "Best Patient Blog" award (click here). In what must've been some kind of clerical error, WK won the award last year (you can see the 2009 Best Patient Blog badge on the left-hand column of this page, if you scroll down). So, if you find this blog to be worthy of such an honor, I'd appreciate your vote. Medgadget has posted a Best Patient Blog voting page (click here), where you can vote for Wheelchair Kamikaze, and see a list of the other finalists. I encourage you to click on the other finalists’ blogs and give them a look. There are some very talented folks contributing really extraordinary work out there…
Update: WK won the vote, and was named Best Patient Weblog for 2010! Thank to all who voted!
Now, back to our regularly scheduled programming…
On November 10, 2010 the Albany Vascular Roundtable presented a symposium entitled "CCSVI and Multiple Sclerosis: Connecting the Dots". Some principal members of the CCSVI Alliance (click here) were on hand, and they videoed an exclusive interview with two leading CCSVI physicians, Dr. Michael Dake and Dr. Manish Mehta, answering questions about CCSVI in general, and expressing their opinions on the proper way to conduct CCSVI clinical trials. As a member of the CCSVI Alliance's Patient Advisory Board, I was happy to edit the piece together, since way back in my pre-MS existence I actually did such things for a living.
The video is packed with fascinating insights and information, and is must-see material for anybody interested in CCSVI. It runs for about 23 min., and was broken into two parts in order to conform to YouTube's file size limits.
And now, for your viewing pleasure, I present Dr. Michael Dake and Dr. Manish Mehta…
Interesting statement about how MS patients fake symptoms to get treatment (around 3:00 on the second film). I don't know about you but that makes me see absolute red. Mind you, my neuro thinks I am "just fine" because I am honest.
ReplyDeleteDo you think we MS patients demand more than other patients? Are we capable of faking results to get treatment? Do we do this?
I find that the variability of the disease makes it seem as if we are malingering. I find this hard, and depressing.
Oy!! I am destined to be pea green with envy!! Why can't I get nominated?!?! WAAAAHHHHHH!!!!! (much foot stamping and pouting)
ReplyDeleteWell, I guess I can offer my congratulations. Sniff sniff. Sniff.
You have done it again -- provided a great service by keeping the MS community informed about CCSVI in a balanced, intelligent way. Thank you.
ReplyDeleteJudy
Marc, keep writing! You cheer me up.
ReplyDeleteI am quite confused about all discussions on CCSVI. Now I watched the two videos with Dr Dake and Dr Metha and sure enough, I got me back to the same stage as I was in at the beginning of CCSVI era-2009. Then I said to myself and my close one that something is quite interesting,
Now why would two professionals like Dake and Metha be convinced that the CCSVI theory has its merits? Because they do belive in it - or is it some other reason? What I can learn, they don't say that this theory is the answer for ms, but they are eager to get expanded research going.
Then we got the sceptisism. Healthy sceptisim is quite all right, but a Swedish neurologist and a German likewise deemed CCSVI as useless. Their papers got presented in a record time and the Swede presented false information in his paper. Why would these guys be reliable? Nothing is proven either way, what I know.
Neurologists want to see randomzed, blind studies. We all want to see that, but us msers just don't have the time to wait ten years.
I fully understand that funding is needed for extensive research, but clinical tests wouldn't be that costly. What's the problem?
lennart,
ReplyDeletei profoundly agree but must say that i am less than impressed with the ambiguous bag of evidence with regards to the merits of this. Here Dake has put stents in just about everyone. Some report good others report bad. Sclafani wont use stents and talks a lot about procedures and nothing about improvements. Do wee really know anything more than we did 2 years ago? Id say not...
ya ya ya, gab gab gab, if we, should we, could we...all hypotheticals....and the ms patients faking...really???jump in my body for just one day.
ReplyDeleteVoted for you Marc, love reading your page even though I have a different illness (although similar in many ways) to you. Cheers Judi from Australia
ReplyDeletekazmo you are kicking booty. 53% of the votes! That new computer is going to look good in those digs in Brooklyn! woop woop!
ReplyDeleteI have EDS Ehlers Danlos Syndrome.
ReplyDeleteI am here courtesy of Dr Diane Driscoll who is advocating this procedure for us.
Since October last year I have been searching for evidence / abstracts to support or disprove her theory without any success. There are other theories which IMO provide better explanations for POTS and dysautonomia we have ie: it is the way we are made [defective collagen], secondary to MAST cell problem and cranio-cervical instability secondary Chiari.
She was supposed to publish results of a retrospective study of head measurements in Oct 2011. Still nothing.
I'm getting a bit pissed off at this stage. As far as I'm concerned she has an hypothesis and has proven squat in regard to her theory ie: it isn't a THEORY.
As someone trained to think, test and design experiments/studies, look for flaws, etc I am unable to find any EVIDENCE to analyse even.
Zero, zilch, squat.
Personal stories of some half hearted successes following CSSVI doesn't cut it for me. Especially if they are later cruelly reversed.
I wouldn't have the procedure at this stage much less recommend it to my nieces.
Feeling fed up with what are seeming more and more like snake oil salesmen out to make a buck out of very ill people who are vulnerable. If you disagree for God's sake show me some real evidence! I really would like to see some. At this time I'm writing them off as a bunch of wankers who have wasted my time.
In case there is any doubt, I wish to state that my above comments relate basically to Dr Diane Driscoll [PhD Optometry]. The doctors in the video are trying to do the right thing.
ReplyDeleteBasically she appears to be making claims that run way ahead of evidence available, and doesn't provide references to support her claims. It is NOT a personal attack on her, just on her 'Theory'. It should just be an hypothesis at this stage, till results substantiate it.