MS in the NEWS. CCSVI is a waste of your money

#MS research #CCSVI is debunked

"A surgical treatment pioneered in Europe that was sought out by thousands of desperate people with multiple sclerosis has been categorically debunked by Canadian researchers".
The Liberation Therapy for multiple sclerosis to widen narrowed veins from the brain was devised by Dr Paolo Zamboni. The narrowing was found in 100% of people with MS and not with healthy people and there were some miraculous cures claimed on youtube.
You could get treatment without bothering with Neuros and scammers sold the procedure to prey on people desparate solutions (These snake oil pelders should be drummed out of business they are not doctors but conmen!). 
The Neurological fraternity was slow to respond and it became an internet hit and people demanded research and access to the treatment. The UK resisted investigation into this but the Canadian and Italian MS Socoieties got sucked into spending millions of dollars on this.
Slowly neuros woke up to social media and started to cast doubts. These people were chastised and ProfG and DrK took the brunt of the wrath of some people and worse we have been bedevilled by certain trolls...yep you know who you are...so do we!


I was told that I was being insensitive because of the artwork I created such as the Zamboni on thin ice
the Zamboni Baloney

                           or the ProfAliG and Joan Beal 
 (CCSVI supporter who created a damming cicular about ProfG
                        and singer for one of ProfGs birthday presents)

I agreed to stop this after talking to the CCSVI crew at Manchester MS life:-(
Who knows what heights in Comic Genius I could have reached?

It was seen as a conspiracy to deny treatment...but bit by bit the original science was called into question and first and foremost was that many people could not even show that CCSVI existed. So hardly worthwhile doing a blinded clinical trail to see if it should be put to the sword. 
However, the Canadians have apparently indeed wasted their time and $5.4 million (apparently jointly funded by the Canadian Institutes of Health Research, the MS Society of Canada and the provinces of British Columbia, Manitoba and Quebec) and done a blinded trial (source the guardian) and surprise it appears that the results show the idea was a dead duck. Surprise, Surprise:-(.



This is obviously a release of news . 
We can put flesh on the news release once we see the paper.  

First we thought maybe it is this

Sadovnick ADYee IMAttwell-Pope KKeyes GKipp LTraboulsee AL. Patient-Reported Benefits of Extracranial Venous Therapy: British Columbia CCSVI Registry.
Can J Neurol Sci. 2017 Mar 8:1-9. doi: 10.1017/cjn.2017.27. [Epub ahead of print].

Objective Chronic cerebrospinal venous insufficiency (CCSVI) has been hypothesized to be a risk factor for multiple sclerosis (MS). Venoplasty has been proposed as a treatment for CCSVI. The aim of our study was to gain a better understanding of the "real-world" safety and longitudinal effectiveness of venoplasty 

Methods: British Columbia residents who self-reported having had venoplasty and consented to participate in the study were interviewed and followed for up to 24 months post-therapy using standardized structured questionnaires 
Results: Participants reported procedure-related complications (11.5%) and complications within the first month after the procedure (17.3%). Initially, more than 40% of participants perceived that the venoplasty had had positive effects on their health conditions, such as fatigue, numbness, balance, concentration/memory and mobility. However, this improvement was not maintained over time 
Conclusions: Follow-up patient-reported outcomes indicated that the initial perception of the positive impact of venoplasty on the health conditions of MS patients was not sustained over time. In addition, venoplasty was not without associated morbidity.

This is not on the website yet

This doesn't look like a trial and essentially says we followed people who had done the procedure, but with time there was no benefit. So saying CCSVI is not worth the cash!.

However in the newspaper it is claimed

"They performed the vein-widening venoplasty procedure on 49 people, inserting a catheter and inflating their veins with a small balloon and a “sham” operation on 55 others, who just had the catheter insertion. Neither the patients nor the researchers knew which people had undergone which operation"

So MD2 has done some digging and it turns out it is a meeting report. So the findings have yet to be published, but were presented Wednesday on the trial NCT01864941 at the Society for Interventional Radiology’s annual scientific meeting in Washington, D.C.

The study was conducted on 104 MS patients across the country. All had narrowing of either their jugular vein, which drains blood from the brain, or their azygos vein, which drains blood from the spinal cord. The patients were randomly chosen to receive either an actual venoplasty treatment. or a “sham” procedure.
In the actual treatment group, doctors inserted a catheter into their blocked or narrowed veins and then inflated a balloon to push out the blood vessel’s walls. In the “sham” treatment group, a catheter was inserted in the vein but no balloon was inflated.
Neither the patients nor the physicians who evaluated them knew who was receiving the actual treatment or who received the sham procedure, making the study “double-blinded.”
The patients were evaluated for MS symptoms three days after the procedure and then at regular intervals for 48 weeks. MRI scans (magnetic resonance imaging) of their brains were used to look for new lesions in their myelin, the coating on brain neurons that erodes in MS patients, leading to symptoms such as numbness, walking difficulties and muscle weakness.
Patients were asked to evaluate their own symptoms, and to perform a limb function and cognitive function test called the MSFC (Multiple Sclerosis Functional Composite).
In all, about 25 per cent of patients saw an improvement in their symptoms, but they were equally divided among the real and the sham treatment groups.
As well, by 48 weeks after treatment, the researchers report that patients’ disability symptoms were back to the baseline established at the beginning of the study. The brain scans also showed no statistically significant changes in either group.

So there you have it..... Gold Standard Blinded study. We can wait until they are published to report and put the "nail in the coffin" and "put this baby to bed".

If it it is, it will be the last time I will bother with this subject as a bit of science?
Maybe VV (vasilis vasilopoulos) can come back for a Swansong and give us his/her take on the story. (Indeed you could do a guest post when the paper surfaces if you want to email).
If you can't remember, VV was a nemesis to TeamG (in my opinion more so than DrDre-no offense intended Bruv), and posed some hard hitting questions in his/her defense of CCSVI phenomenon.
VV even took part in our first Question Time at the First Research Day, giving his answers to your questions ( I kept them secret from the panel)...I can't remember the question but his response "next question" showed us what he/she thought about some current neurological approach..it got a good laugh from the panel (not broadcast).
VV even formed part of our brain training memory game, if you can stretch back to 2012
http://multiple-sclerosis-research.blogspot.com/2012/01/brain-training-light-up-parts-that.html

Today I reveal

vasilis vasilopoulos (person on the left is picture of a vasilis vasilopoulos from the internet..not the VV) thinks (light bulb = idea = think), doctors (money=change=to doctor), sometimes (catfish=sum, newspaper = times), talk (Robert Kennedy = Ted Kennedy = Ted talk = talk),  rubbish (Shiite Cleric= shite = crap =rubbish).  

What association did you use to remember this? 
At least I think that was the order:-).
    
There are still people doing this procedure, it is your money, it is your risk, but medical advice would be do not waste your money as there is no evidence for benefit.  

Apologizes if you find the post insensitive.  I realize that people have been charged $10,000-$20,000 for this procedure.

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