“Politics not science pushing MS treatment agenda

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

“Politics not science pushing MS treatment agenda

Postby Direct-MS » Thu Dec 23, 2010 10:55 pm

Comments on Rob Breakenridge’s recent Calgary Herald column “Politics not science pushing MS treatment agenda”

Ashton Embry, December 23, 2010

I decided to comment on this column because it was a curious mix of the author getting a few important points correct while at the same time getting a number of important points completely wrong. Such a mix of good and bad is not uncommon and reflects the limited knowledge most reporters have about science in general and CCSVI in specific. I would emphasize that they cannot be faulted for this and I do not expect to see a truly insightful and scientifically correct article on CCSVI in a newspaper. One might hope for such an article in a scientific journal but it seems CCSVI carries too many major financial threats to the pharmaceutical industry and the neurological profession to allow a dispassionate and accurate analysis of the issue to be published at this time.

So what did I like about Rob’s article? The biggest contribution was Rob’s criticism that the recently announced observational study on CCSVI is highly flawed .and that it was proposed for political reasons rather than scientific ones. It is impossible to disagree with this analysis and, as Rob notes, even the leader of the highly questionable study, Dr Tom Feasby (disclosure -he and I went to high school together almost 50 years ago), admits that the study will produce little of value and that it was political pressure from patients that forced the issue of doing something on CCSVI regardless of its worth.

So it appears that everyone (reporters, study leader, anyone with common sense) agrees that the planned CCSVI observational study will produce nothing of value. The only one point I would make here is that financial considerations also were part of the creation of such an absurd study and I have discussed this in detail in the essay “The Sad, Sad, State of CCSVI Research in Alberta” . The bottom line is that the neurologists designed a long term, worthless study with the purpose of claiming something was being done while at the same time delaying any meaningful research on CCSVI in the near future (5 years).

I doubt if Rob appreciated why such an obviously flawed and unscientific study was being pushed by neurologists who have a good knowledge of science. The neurologists know full well no good science will be forthcoming from the “observational” study but that it will buy them 5+ years in their struggle to stop CCSVI from upsetting their lucrative financial relationships with the drug companies.

It is nice to see that Rob reads the odd scientific paper on CCSVI and even on other aspects of MS research. However, if one wants to comment on a scientific topic with any credibility, it helps to be well versed in the literature and I am sure Rob is not (for starters I doubt if he has read most of the 200+ important, scientific papers on CCSVI-related issues). His reference to the Dorne et al, 2010 editorial in the Journal of Neurointerventional Surgery misses the key point that the authors state in their conclusions “If more solid clinical evidence can confirm that the CCSVI/MS relationship is real, randomized clinical trials will be required to assess the benefits of endovascular interventions.”

The good news is that we have overwhelming clinical evidence that the “CCSVI/MS relationship is real” given that well over 10,000 persons with MS have undergone selective venography (gold standard for CCSVI detection) in numerous clinics throughout the world and in every location over 90% of tested patients have been found to have CCSVI. Such a huge amount of clinical evidence is indisputable unless you believe IRs throughout the world are involved in a conspiracy of global proportion. So, for rational thinkers, the obvious next step is to do a proper clinical trial as soon as possible, another point which Rob touched on (“There is a process for determining…the efficacy of a medical procedure”) but missed the clear need for immediate action rather than endless dithering and delay preferred by the self-serving neurologists.

Regarding Rob’s comment “the hype and the science may be on divergent paths”, ironically, exactly the opposite is true. Solid science is driving the hype and the hype has been necessary because the neurologists are refusing to objectively evaluate/discuss the science. They are simply maintaining their initial, knee-jerk, and completely unsupportable reaction that CCSVI is either a hoax or, at best, has nothing to do with the MS disease process. Of course, this unscientific reaction is driven by fear of major financial loss should CCSVI prove to be even half as effective for MS as it appears to be. Without the hype, the science of CCSVI would have remained suppressed by the neurologists and thousands of persons with MS would not have had their impaired venous drainage restored and enjoyed all the benefits associated with proper blood flow within the brain.

Not surprisingly, Rob could not resist referring to the scientifically flawed and ethically challenged CIHR Report written by Alain Beaudet. This incredibly biased and erroneous report, which again was a “stall the CCSVI research” tactic of the neurologists, shows the problems and pitfalls of Rob’s somewhat naive statement “Despite the advice from those we trust to provide us with such advice”. Rob should know that it is never wise to trust the advice of anyone with a major financial conflict of interest on the topic at hand. They will always support the position which is financially favourable for them regardless of the evidence and that is why is important to understand when a conflict of interest in present.

I have to comment on Rob’s misplaced excitement over the MS research news (“a key gene” discovered in a mouse) which is based on results from the mouse disease model EAE. If Rob had been following the MS literature for the past decade or two, he would have realized that about once a month we hear about some “groundbreaking research” based on the highly questionable, EAE mouse model. Notably, such research findings have added very little, if anything, to our “understanding what causes MS and how better to treat it in the future” and of the many hundreds of therapies which have “cured” EAE over the last 50 years, not a single one has any significant effect on MS. Comparing such an obscure and almost assuredly irrelevant research finding to the truly breakthrough discovery of CCSVI reveals Rob’s lack of in-depth understanding of multiple sclerosis and what is important and what is not.

Finally, it is hard not to agree with Rob’s sentiment that “Political interference and grandstanding have no place in the equation”. What we need are common sense and objective, rational thinking combined with a thorough knowledge of the science of CCSVI and MS. We cannot look to neurologists for this because of their overarching, major conflict of interest in regards to a potentially effective non-drug treatment for MS However, we can only hope that government officials will be able to realize that what is needed as soon as possible is a proper clinical trial which tests the efficacy of CCSVI treatment for MS. Although it appears such common sense and clear thinking do not currently reside in the Alberta government, the good news is that they are present in Saskatchewan where plans for such a required trial are well advanced. We can only hope that, in 2011, science will triumph over the financial interests of the neurologists.
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Re: “Politics not science pushing MS treatment agenda

Postby concerned » Thu Dec 23, 2010 11:10 pm

Direct-MS wrote: We can only hope that, in 2011, science will triumph over the financial interests on both sides of the fence.



Fixed!

Direct-MS wrote:What is needed as soon as possible is a proper clinical trial which tests the efficacy of CCSVI treatment for MS.


Agreed!

Direct-MS wrote:we have overwhelming clinical evidence that the “CCSVI/MS relationship is real” given that well over 10,000 persons with MS have undergone selective venography (gold standard for CCSVI detection) in numerous clinics throughout the world and in every location over 90% of tested patients have been found to have CCSVI.


What is your source for this information?
concerned
 

Postby Billmeik » Fri Dec 24, 2010 6:20 am

Nice words. Mr Embry!

I think it's a good time to assemble the overwhelming evidence, since it is arriving from all over the world, to show that there are lots of replications that get far higher numbers than the 2 this article selectively picks out..
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Re: “Politics not science pushing MS treatment agenda

Postby scorpion » Fri Dec 24, 2010 7:41 am

concerned wrote:
Direct-MS wrote: We can only hope that, in 2011, science will triumph over the financial interests on both sides of the fence.



Fixed!

Direct-MS wrote:What is needed as soon as possible is a proper clinical trial which tests the efficacy of CCSVI treatment for MS.


Agreed!

Direct-MS wrote:we have overwhelming clinical evidence that the “CCSVI/MS relationship is real” given that well over 10,000 persons with MS have undergone selective venography (gold standard for CCSVI detection) in numerous clinics throughout the world and in every location over 90% of tested patients have been found to have CCSVI.


What is your source for this information?


Forget it Concerned. No one ever responds when you ask them to back up there statements. Most people know that the figures he gave are inaccurate. I do wish there would be some kind of database we could use to track results but as of right now we have a mish mash of "stories" spread out throughout internet websites.
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Postby EJC » Fri Dec 24, 2010 8:25 am

Is there any point actually having this discussion? The posts will be deleted within 24 hours anyhow.

Anyway....Give it 5 to 10 years and you'll have all the empirical information that you could possibly wish for. Positive or negative.

The thing is, in 5-10 years my partners MS may have deteriorated to a point where she no loner wwants to live.

On that basis we've decided to crack on with it all now.

Will let you know how it works out.
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Postby scorpion » Fri Dec 24, 2010 8:43 am

[quote="EJC"]Is there any point actually having this discussion? The posts will be deleted within 24 hours anyhow.

Anyway....Give it 5 to 10 years and you'll have all the empirical information that you could possibly wish for. Positive or negative.

The thing is, in 5-10 years my partners MS may have deteriorated to a point where she no loner wwants to live.

On that basis we've decided to crack on with it all now.

Will let you know how it works out.[/quote]

There is absolutely a point to having this discussion. People are spending there life savings in order to get a treatment that they are being told will"liberate" them from MS. Is it wrong to ask where Mr. Embry got his data or she we just let it go so when someone newly diagnosed comes along they will believe what he is saying is true? For that matter maybe it is but if so lets see the data. I am not sure why you feel the posts will be deleted. If I made a statement such as 1000 people with MS have eaten grapefruit and no longer have any symptoms of the disease I would expect someone to ask me to provide my source for the information.
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Postby EJC » Fri Dec 24, 2010 9:13 am

I've now lost count of the number of deleted posts/threads I've had on this forum.

Why don't you ask Mr Embry for details of his empirical data, you seem so keen on getting it posted, why not help everyone and get it on here yourself.

I'm spending thousands on this procedure, of my free will having spoken with the surgeons that will be undertaking it.

My decision to do this is entirely based on conversations we've had with the surgeons and consultants undertaing the procedure. Mr Embry's postings have not effected our decision one way or the other.

I have no wish to wait 2,3,5 or 10 years watching my partner deteriorate when there is reasonable evidence that getting the procedure done now has a decent chance of giving her some life back.
Last edited by EJC on Sat Dec 25, 2010 4:11 am, edited 1 time in total.
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Re: “Politics not science pushing MS treatment agenda

Postby HappyPoet » Fri Dec 24, 2010 9:16 am

scorpion wrote:Forget it Concerned. No one ever responds when you ask them to back up there statements. Most people know that the figures he gave are inaccurate. I do wish there would be some kind of database we could use to track results but as of right now we have a mish mash of "stories" spread out throughout internet websites.

Scorpion, I arrive at about the same figures Dr. Embry arrives at simply by being an active observer of the wealth of all kinds of information that is available on the Internet in the form of CCSVI conference videos and transcripts; TIMS' forum postings by Dr. Sclafani; Facebook postings by Arlene Hubbard; firsthand reports from my vascular surgeon (performed v-ography/v-ogram), my interventional radiologist (performed MRV and US), and my MS specialist; secondhand Facebook postings regarding Dr. Siskin's numbers, and the exploding number of anecdotal patient histories found on the pages of social networking sites (Facebook, MySpace, others), blogs and forums from all over the world, such as from the US, Canada, Italy, Poland, England, and Bulgaria, to name but a few. The numbers add up fast.
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