CCSVI Neutral or Critical Perspectives

[DougL]

If my children were diagnosed today, I would insist on them getting their necks assessed.

Then I would also insist that they were tested for Lupus, Lyme disease, Hughes Syndrome and Candida


Sunnee

then i will pray for your children.

me, i would check them for CCSVI and maybe just maybe STOP MS BEFORE IT EVER STARTS

[Cece]

It works the other way, too:

"scientific evidence racing behind the internet "

Exactly....
Patients also brought research papers from the internet to their IRs, back in 2009 and 2010, and that's what brought CCSVI to the attention of the IRs.

IRs speak the language of CCSVI (occlusions, angioplasty, luminal abnormalities, perfusion, elastic recoil, reflux, focal hypertension, venous congestion, CSA, ivus, diapedesis). Neurologists still don't speak the language.

edited to add: what I meant by agreeing with sou was that we'd compiled the research papers and everything relevant faster than it had receached the IRs who would then become our CCSVI researchers. We contributed to the process, we were the first to step forward to say, ok, unblock my veins. Not that it was internet evidence such as anecdotal evidence. We pushed this forward, we raised awareness, and good trials will be underway years earlier than they otherwise would have been, and that is a good thing, because we will get answers. Has everyone read Dr. Shannon's interview about the Canada trials? Dr. Shannon is a very good spokesperson and comes across as having a deep knowledge of trials and being relatively neutral about CCSVI, so it is all a matter of getting appropriate trial protocols that will answer the questions that we all still have. I know enough about CCSVI to know we have more to learn, and that trials will give us some of the answers.

[Sunnee]

Nah I dont think so.

[1eye]

It works the other way, too:

"scientific evidence racing behind the internet "

We definitely need better scientists. They don't understand that by offering "solutions" like interferon, they have lost their credibility. How can they convince somebody that the blocked veins, that can be seen, do not exist while interferon has a positive impact in the course of MS? I wonder...

That's not fair. Dr. Tucker points out that there is more than one kind of, and goal of research, and what we are asking for is better than interferon, at least in the short term. People have to do all kinds of research, because we not only need to know what's wrong, but we also need to know the best way to fix it with the available money. Not many are under any false delusions about how wonderful interferon is. I've survived without it. It is, though, one of the first things in the long history of the ailment, that was proven to make any difference in the short or long, in "MS". Better than nothing is a good first step.

[scorpion]

Internet evidence will not stick without strong scientific evidence to eventually back it up. Although some researchers/people will never back down from their beliefs even in the face of a mountain of evidence refuting their position due to their egos, the majority of people will see it for what it is. So either CCSVI will go the way of the dinosaurs(or maybe Elvis since some people do still believe he is alive) or scientific studies will prove its validity however so far it is not looking to hot.

[sou]

Internet is a medium of collecting information. IMHO, it's the largest medium of its kind. Isn't it expected for somebody that keeps going downhill following his/her neurologist's advice to seek more information? Where would somebody look if not the Internet?

@1eye: No, interferon has never been proven to prevent disability. It has been proven that it may decrease the number of relapses in some patients. Personally, I wouldn't take a drug that prevents nothing and makes you feel like sh*t all the time.

Re CCSVI, I wish it goes the way of the dinosaurs, because given the prehistoric age of MS research and treatment, dinosaurs will soon be the dominant species.

[civickiller]

7 out of 8, 87.5% of ms patient in an upright mri study reported having trauma in there life before being dx'ed with ms. like me i fell from tree when i was 10, 15 years later i get dx'ed with ms. might be different time frame for every one because every ones trauma is different

me personally would take my kids to get checked out with any kind of head/neck trauma by a Upper Cervical Care dr, i wouldnt wait till they get diagnosed, prevent ms or any neurological disease from happening; but if for they developed ms still, i would do test of Lyme and Candida then if they still had symptoms ccsvi.

[scorpion]

Internet is a medium of collecting information. IMHO, it's the largest medium of its kind. Isn't it expected for somebody that keeps going downhill following his/her neurologist's advice to seek more information? Where would somebody look if not the Internet?

@1eye: No, interferon has never been proven to prevent disability. It has been proven that it may decrease the number of relapses in some patients. Personally, I wouldn't take a drug that prevents nothing and makes you feel like sh*t all the time.

Re CCSVI, I wish it goes the way of the dinosaurs, because given the prehistoric age of MS research and treatment, dinosaurs will soon be the dominant species.

Of course pointing out misinformation on TIMS can result in negative consequences but here goes anyway:

http://www.medscape.org/viewarticle/561006

Fewer patients in the early-treatment group had confirmed EDSS progression, a 40% reduction in the risk for disability progression, than in the delayed-treatment group, which amounted to an 8% absolute risk reduction.

A significant difference in time to confirmed progression was found in favor of IFNβ-1b (p = 0.0008). The IFN group had a 21.7% reduction in rate of progression, or a 12-month delay in reaching similar disability levels compared with placebo. This effect was also seen in time to becoming wheelchair bound (EDSS 7.0 or greater) being delayed by nine months.

More importantly, early treatment reduced the risk for progression of disability, as measured by a sustained one point change in the EDSS, by 40% compared to the delayed treatment group

.

http://www.everydayhealth.com/health-qu ... t-provigil

reported results of a follow-up study called ASSURANCE. In this study, people completed questionnaires, and those currently taking Avonex for up to 15 years reported better overall results in key areas, including disability progression and quality of life,

[Cece]

from the first research link scorpion posted:

These results should, however, be interpreted with care because the magnitude of benefit, although statistically significant, is clinically small," he concludes. "This follow-up should not be misconstrued as evidence for a treat-all approach."

[Cece]

http://www.everydayhealth.com/health-qu ... t-provigil

reported results of a follow-up study called ASSURANCE. In this study, people completed questionnaires, and those currently taking Avonex for up to 15 years reported better overall results in key areas, including disability progression and quality of life,

I couldn't find the ASSURANCE trial in google scholar. Only articles talking about it, but not the actual study. According to this, though, 24% of the other patients were taking Tysabri when recruited for the study. So, the average patient who has been taking Avonex is healthier than the average patient who has been taking Tysabri? This can be explained by selection bias: the patient who chooses to go on Tysabri is worse off and has a more severe form of MS.
http://www.drugs.com/clinical_trials/ne ... -5592.html

ASSURANCE was a retrospective trial. Prospective trials are more informative.

[Shayk]

Sou wrote:

No, interferon has never been proven to prevent disability. It has been proven that it may decrease the number of relapses in some patients.

Sou, your statement is in total agreement with a recent article on Pharmacological Treatments in MS, in Issue 18, 2011 of "MS in Focus", published by the Multiple Sclerosis International Federation (MSIF)

I think you have to download the pdf, the following quote is taken from page 6 of that issue.

Currently approved drugs have a demonstrated efficacy for preventing relapses from occurring.

By contrast, their efficacy for preventing the long-term accumulation of disability is not evident.

This dissociated efficacy is in line with the observations made on the natural history of the
disease: relapses have only a marginal effect on the long-term accumulation of disability.

Therefore, relapses, rather than progression, are indications for treatment with the currently available drugs for MS.

Take care all....rock on!

Sharon

[Lyon]

..

[MSUK]

No causal relationship between obstructed blood flow caused by venous narrowing and multiple sclerosis (MS) was found in a combined MRI and ultrasound study, German researchers reported.

Chronic cerebrospinal venous insufficiency has been proposed as the causal trigger for MS development. However, there is no gold standard for venous flow assessment, and current data are contradictory, said Florian Doepp, MD, of Charité University Medicine Berlin and colleagues in the Nov. 8 issue of Neurology.... Read More - http://www.msrc.co.uk/index.cfm/fuseact ... ageid/2944

[CureIous]

http://www.eurekalert.org/pub_releases/ ... 080210.php

I already used the "look ma" line in the last "neuro imaging study of the week."

Since Doepp is a repeat muckraker, I'll let his previous work speak as to motivation.

Not sure how buddying up to these types of antagonists or varying our ccsvi verbiage does anything for the VAST majority of neurologists dead set on margianalizing us with "conclusive" findings.

Anyone think that will sway Doepp from publishing his studies "until further studies can be undertaken?"

What about Stanford neuros? How far has that tact (as patients and advocates) gone there? 2012 coming up mighty quick, we can't even get decent MEDIA coverage.

The disservice continues. Back in 2009, this kind of talk was hand-waved back into conspiracy land with nary a thought, now, its just status quo reality. I was there, I remember. (new veins and all )

I don't envy IR's one bit trying to navigate around these smoke and mirrors roadblocks

[HarryZ]

Strictures of the jugular veins are common in healthy subjects.

And brain lesions, used to determine efficacy of drugs in trials, can randomly come and go in healthy subjects.

This 15 person study (anyone else using only 15 people in a trial to determine much of anything will get slammed for their conclusions) brought on the result "unlikely to cause" terminology in their report. Yep, use only 15 people and nothing much can ever be proven especially when it comes to a disease like MS.

Geez Bob, it really is unfortunate that some researchers are running around trying to disprove other research work by conducting trials on such a small number of healthy subjects in a limited manner. Like I said months ago, the wagons are being circled to protect reputations.

Harry