The BigPharma Alternative or BPA – join the movement!
Our email address: bartsmsblog[at]gmail.com
Whilst looking up Dr Robert Zivadinov’s Copaxone Study today, I came across this interesting video of Dr RZ talking about his studies, MS, EVB, iron & CCSVI – even Sir Bradford Hill gets a mention.http://www.youtube.com/user/RadiologySUNYDownst?feature=mhee#p/c/CC6FC04B417CC189/2/g3WEXoT0lLgHe seems to disagree with Zamboni’s original hypothesis about causation, but he hasn’t thrown the baby out with the bathwater…. I like his enquiring mind and I love his accent.
If he spoke abit quicker it maybe would not be a 48min video
He-he! I thought it was worth sticking with though, but I did have a lunch break in the middle :-)
John, check out Clive Beggs presentation (if you haven't already). His fluent English reduced total time to 35min.
Good morning MouseDoctor,Re: Haacke / CCSVI post 12th Jan 2012‘However, it is a shame that they did not examine 200 healthy individuals and see what the proportion or vascular abnormalities’If you take the time (28mins and 35mins) to look at these links to the CCSVI conference last autumn, you would see how Haacke is perfectly aware of this issue. In fact he has already started a project to scan 1000 ‘normals’ for just this purpose.http://www.youtube.com/user/RadiologySUNYDownst?feature=mhee#p/c/CC6FC04B417CC189/18/eVFC3eXaFIc(It’s a shame there are no slides on this, but you can still get the jist. This does give more time to enjoy his shiny head though...)http://www.youtube.com/user/RadiologySUNYDownst?feature=mhee#p/c/CC6FC04B417CC189/3/6RU45OffJdQ(This one is a bit drier but has slides. He talks about data and ‘normals’ from 33min and at 21m30s he gives Doepp a cheeky mention.)I think maybe it is not reasonable to expect these researchers to have all the answers after just 2 years of study. I think Zivadinov, Haacke, McDonald, Sclafani etc. have made a good start in extending understanding in this area.
Hi Prof GIn your post of 25th June 2011 – ‘CCSVI: Could dehydration be a possible confounding variable?’ you asked: "I wonder if the CCSVI investigators' have considered this?"Zivadinov’s team at Buffalo hydrate their subjects / patients with 16 oz. of water within 2 hours prior to scanning.http://www.youtube.com/watch?v=mMjzFjQgVKU&feature=relatedAmongst other things, this presentation by Karen Marr (who is the Doppler Ultrasound Unit Director at Buffalo Neuroimaging Analysis Centre) mentions briefly the issue of hydration of the patient (@6min).
Wonder if they are using the Prof.Z. consensus protocol?
The main point of Haacke's study is that the differences in flow where not accounted to MS but to the degree of the vein obstructions. In other words, CCSVI exists as an entity and has measurable blood flow reduction. You may say that there is nothing wrong with having reduced blood outflow from the brain, but then again i bet no one would like to experience that for a lifetime. It is an uneasy thought.
Hello again Dr MouseDoctorRe: ‘Wonder if they are using the Prof Z. Consensus protocol?'I’m not sure which study you are referring too, but it says that Haacke used MR imaging. Unfortunately I don’t know the methods used by the Floris study. Zivadinov uses the original Prof Z protocol and Zivadinov’s methods are explained well by Karen Marr in the link I posted above.Re: This field needs a standardised protocol to see what the true occurrence of CCSVI is.I agree, but it should be noted that even when we just had Prof Z’s original protocol, this was not followed by some the folk who rushed out negative findings. Doepp and Mayer didn’t use Prof Z’s diagnostic methods in their studies (despite claiming to) and I think this has contributed to the mudding of the water…This clip shows Sandy McDonald talking about this:http://www.youtube.com/watch?v=YBWUXQX3Tto&feature=uploademail It’s a good round up of recent studies. Doepp is mentioned at 9mins and Mayer at 12m35s. The standardised protocol was proposed back in March 2011 at the ISNVD (International Society for Neurovascular Disease) Annual Meeting and I did mention this to Dr Schmierer back at the last MS research day. Many centres adopted this protocol very soon after. http://ccsvicancun.com/2011/03/consensus-on-ccsvi-diagnostics-from-isnvd-meeting-in-bologna/(The next ISNVD meeting is 18-22 February 2012.)I’ve been keeping my own experience out of this because it’s ‘only anecdotal’, but I was scanned twice before treatment – once with Prof Z’s original protocol and then again with the consensus protocol. Both times resulted in a diagnosis of CCSVI. The catheter venography used during my treatment (last April) closely matched the ultrasound findings.I’m going back to Edinburgh for my follow up scan next week. I’ll let you know how it went at the next research day if you’re interested.
It’s a good day today.http://www.gov.sk.ca/news?newsId=220326aa-d59e-4f60-8d8f-f6b2da096adeMS CLINICAL TRIAL APPLICATIONS OPEN TO SASKATCHEWAN PATIENTSDouble blind a-go-go!
Good news if trials are starting I understand these are being planned by Gary Siskin from Albany, New York,USAThen the concept can either live or die if the trial is done properly.
Regarding Google Trends:http://support.google.com/insights/bin/answer.py?hl=en&answer=92769&topic=13975&ctx=topic"A downward trending line doesn't necessarily mean that the absolute traffic for a search term is decreasing - only that its popularity (or query share) is decreasing"That's one. For more, we have to take into account all parameters affecting Internet-user behaviorism, starting, let say, from the role of bookmarks in a browser...
Vasilis Vasilopoulos, you've been told countless times by many readers (and MS researchers)to give the CCSVI thing a rest; yet here you are again, saying the same old stuff, again.The vast majority of us are not fans of the CCSVI spin stories. You know that. Please, for the love of God, stop harking on about it and trying to sustain its importance. It's a form of treatment that isn't really helping anyone. It's no different from third-world skeemers selling fake stem cell treatments to vulnerable MS'ers.
What are you talking about, anonymous? It's not me who is posting Google-trends updates. I'm just criticizing the interpretation of them.
This google business seems pretty silly to me and is in stark contrast to the positive and intelligent work being done by the people linked to above. Rebif is also trending downwards as a search term but so what? Once you know what something is, for the most part, you don't have google it - you just go direct to sites that you know will give you good info on it. Eg MSRC or here; although I wouldn't personally recommend here as ones only source CCSVI info obviously ;-)Dear anon, if stories are posted on this blog I think it's fair and good that we can dicuss them no? You've rather come in all guns blasing. I suggest you do some googling on CCSVI as a topic, or watch some of the links I posted to get a fuller picture of the good research going on. Double blind studies are now underway so we will find out soon enough.
Vasilis Vasilopoulos and John,I agree with Anonymous. I am not interested in reading your misinformed comments about CCSVI. Frankly, the more you post these type of statements, the more you convince me that CCSVI is a scam. If you want to convince me of its validity, then let the results of the studies, like Siskin's speak for themselves!And since John believes in the validity of anecdotes, here's one for you. I went from and EDSS of 9 to an EDSS of 1.5 WITHOUT any type of surgical intervention. Did my veins unblock themselves? Don't come back here without an explanation!And since you two are big YouTube fans, here's one you should watch. VV, did you contact Dr. Rubin and ask him why, as a vascular specialist, he doesn't believe that CCSVI exists?: www.uhn.ca/Focus_of_Care/Munk_Cardiac/whats_new/PMCC_Conference/public-lectureMS/video/index.asp#presentation
"Please, for the love of God, stop harking on about it and trying to sustain its importance."I second Anonymous. You two are not helping your crusade.
Hmmm, I'm at a loss to understand these very hostile posts. I just came here to share a bit of info. I think you should go and have a nice cup of tea Maria.