This Is MS Multiple Sclerosis Community: Knowledge & Support

Here are the links to the CMAJ editorial and Globe and Mail article about the editorial. There are good points made in the editorial, that medical research should be driven by science, not politics. However, while many MSers would agree that research funding should be based upon good science, they feel that it is already driven by politics... the "politics" of money that comes from big drug companies, and the "politics" of researchers and organizations that are invested in the status quo. As well, many MSers are tired of how they are portrayed as "desperately hopeful", as if that means that they can't make good decisions about their own treatment based upon the evidence and good arguments. Actually, many of these "afflicted, desperate people" know more about the issue than the neurologists that have been giving their "less-than-humble" opinions.

CMAJ: <shortened url>

theglobeandmail.com: <shortened url>

_________________
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com

Fiddler,

I agree about the politics of money. But then there is also the politics of science !! Entrenched scientists will stick with an old way of thinking when all possibilities must be explored. I am a pretty hard-nosed realist when it comes to science. I want there to be proof of CCSVI and MS. But if the theory is considered junk without any fair trial then that is not science. I hope that Dr Dake will also perform a trial and many many others will also. That is what Dr Zamboni wants.

The authors of the CMAJ editorial miss a number of key points probably because they know very little about the science of CCSVI. It is unfortunate they did not do their homework before writing their inadequate and somewhat naive editorial.
The current published scientific evidence leaves no doubt that CCSVI is closely associated with MS, that CCSVI precedes the MS disease process and that there are numerous, very plausible biological mechanisms which relate the effects of impaired venous flow (CCSVI) to the MS disease process. This science, in conjunction with the availability of a very safe, established procedure to resolve CCSVI is enough to justify treatment of CCSVI for anyone with MS.
Once you add the facts that it will be at least 8 years before the proper research is done (note current MSSOC research ending in 2012\13 just looks at the already established CCSVI/MS association and will add nothing new) and that many people will suffer major added disability in those 8+ years, it becomes ridiculous and basically barbaric to deny treatment.
The final problem is the gigantic conflict of interest that almost all MS neurologists have with an effective, vascular, non-drug treatment. The financial consequences of CCSVI treatment are dire for MS neurologists and this has led them to publicly claim CCSVI is a hoax and to lobby hard to stop any treatments and to ensure no useful research (i.e. treatment trials) is done by MSSOC. It appears the neurologists have persuaded the CMAJ editors to help them beat back the obvious need for CCSVI treatment. Such are the current politics of MS which are dominated by the financial health concerns of neurologists rather than the physical health concerns of patients.

Thank you again, Direct MS for clarifying the problems with CCSVI research. Do you not think though that things are moving ahead....the Buffalo treatment study (albeit small) and the St. Joe's/McMaster study beginning soon....I know they are small steps but at least there is some movement....I don't think the neuros can hold on to their cash cow illness for much longer....they will have to give in soon. Now, I see to keep them happy they are saying that CCSVI treatment AND DMD's could be the answer...(Buffalo study)...that to me doesn't make much sense....the interferons are for the autoimmune theory....if CCSVI has a lot to do with exacerbating MS, the need for immune modulating drugs seems unnecessary....would be interested in your response....I know the political thing is to collaborate with the neuros but I don't think that is your mantra..........thank heavens for that.

I find it interesting that the words "hope" and "desperation" are constantly invoked in these editorial pieces (not research, just more opinion)-to characterize MS patients as being uneducated or naive. On the contrary, I find most MS patients and caretakers that post on the internet are savvy regarding research published in peer-reviewed publications, and understand the science behind CCSVI. The only hope and desperation I sense is coming from a medical community that wants to maintain the status quo.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

once again .... the article written in the CMAJ is the opinion of one person . The article ends with the disclaimer that the opinion you have just read does not reflect the opinion of the CMAJ.

This article was written by the Editor of a journal . Much as Editors do in all other journals , magazines or newspapers. You can take it or leave it.

In this case .... I'd advise you leave it.

It would be beneficial had the article provided fair comment and balance .

But that is sadly lacking in today's journalism . Instead ... you are forced to research multiple opinions from multiple sources .... in order to get the facts straight.

Sadly ..... this is the way it is.




Stay Calm ...... and Carry On







Mr. Success

jackiejay,

Buffalo is NOT saying that CCSVI and DMDs are a combined answer. Their study is about CCSVI not about the DMDs. Some criticism of Dr Zamboni's work say that the improvement he saw was due to the fact that the patients were on DMDs. So to counter this argument BNAC has to keep the DMD/NO DMD a constant in their study. I can almost guarantee that they are NOT biased towards DMDs. I wish this misconception could be nipped in the bud.

So if BNAC does a double-blinded study and finds that those patients who actually got the procedure do better than the sham procedure or the controls, then they can possibly account for placebo, and rule out that it is the DMDs that are causing any improvements. My major worry is that this trial isn't big enough. Will anybody be convinced by a 30 person study either one way or the other ?

ozarkcanoer

30 people is a good start but I HOPE that the results will be published before 2011.

Researchers Forum,
by R. Annan
29 June

"public has a right to influence research policy"

if you want to read more, posted on CCSVI at UBC MS Clinic facebook

there is an article in the National Post today where Dr. Hebert (one of the doctors who wrote the editorial in the CMAJ) states Dr. Zamboni's theory sounds "fun and interesting".....there goes his credibility....what a condescending statement to make....unbelievable.

Ozark, yes, I believe 30 people will be enough to be able to establish (and eliminate) what is placebo effect and what is real effect of treatment, especially if results are overwhelming. Since the procedure is low risk, if the results are good, it may be enough to interest a whole lot of interventional radiologists to begin offering this low risk treatment to MSer's. And it may be enough to quell the "hoax" or other outright dismissive statements, possibly (with the huge public and media interest) persuade Health Ministers in Canada to allow it on compassionate grounds for some MSer's in Canada and even allow private clinics to offer it privately for-pay while they continue their studies.

I personally think any solid blinded evidence will go far in increasing credibility for this.