This Is MS Multiple Sclerosis Community: Knowledge & Support

Agreed 100%. This is a neuro-led effort to silence the masses. Laughable.

Brian

I don't understand why neuros are even being given the option to study CCSVI this is a vascular issue!! Just because they have experience with MS that doesn't mean they understand the blood flow issues. I think the money should go to vascular specialists and interventional radiologists with MS neuros as consultants. Annoying!

"CCSVI: Pursuing Promising Avenues in MS Treatment and Research"

This was the title to the call for research on the NMSS website.

What happened to the treatment part?

I am not sure I ought to comment being in the UK. But this IS disgusting.

Hopefully one of these is near where you live!

Participants will likely be selected from existing patient rosters. I saw at least one of these studies includes catheter venography.


I really don't see how one can be denied treatment if a blockage is found...

Good Luck!

A/C

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If you can't explain it simply, you don't understand it well enough. - Al Einstein

And not to put too fine a point on it...but it appears in the US the grants were given to society insiders.

Dr. Jerry Wolinski--chair of the NMMS 2010 Clinical Advisory Board

Dr. Robert Fox--Advisory Committee on Fellowships for the NMMS

Dr. Aaron Field-- 2010 NMMS recipient Nervous System and Repair Team

Wow--they really went outside the box looking for researchers in the US.

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

From the NMSS (US) press release: "Dr. Aaron Field, University of Wisconsin School of Medicine and Public Health, Madison...has put together a team that includes the director of the university’s MS clinic, experts in MRI physics and ultrasound, a neuroradiologist with extensive experience in vascular imaging, and a statistician with ample experience in clinical research.". Dr Field is a radiologist which is great. My neuro is part of the clinic and when I mentioned CCSVI to him he said "Criminal. It's just criminal! MS is not a vascular disease." Wonder if that bias will end up in the study?

I agree that the bigger issue is when will they treat?

_________________
Dxd 1994 RRMS, 2008 SPMS
Climb on!

Words cannot described our emotion.

Okay, now you have all got me pissed, do we boycott the Society that was established to find a cure, and support us? I have faithfully (and successfully) raised money for them over the past few years and now they are spending it on proving what everyone knows? I feel like I need to write an apology letter to everyone who has given me money for the MS Society. They are supposed to be on our side aren't they? My wife and kids have been excited about CCSVI and the hope it brings. I don't look forward to telling them that in a couple years the medical community may know something. I now know why Depression is so high among MS Patients. Thank you MS Society, for clearing that up for me.

I have just totted up the number of subjects in these studies. I have had too much to drink so please check this but.

Total subjects with MS: 552
Total subjects without MS: 607

IT says somewhere that this is supposed to clear up the confusion created by Zivadinov (I think.)!

How can this do anything but create more controversy?

Another horrible thought. Was Zivadinov an applicant and have they rejected him? Did Stanford have an application?

We need disclosure of what applications were made but failed.

.

Thanks for the info Lyon. But it doesn't deny the need. Merely states they won't comply. We do need to know.

Regarding MSSOC grants:
First of all the amount of expenditure by MSSOC is laughable, 350K a year or about 00.5% of their annual haul. Secondly, the research is basically reinventing the wheel. The association of MS and CCSVI is well established by the Buffalo research (notably they were shut out) and by the 1000 and counting CCSVI treatments throughout the world. This on top of findings such as Macdonald’s 90% of almost 300 MS patients having CCSVI leaves no doubt that CCSVI and MS are associated. What the research will contribute to is how many non-MS individuals have CCSVI and this is somewhat useful. The work on children and twins will add important new information although the numbers are very small and hence will be scoffed at.

One major concern is the ability of the researchers to detect CCSVI with the Doppler. It is well established that extensive training is needed and one can only wonder if the technicians doing the Doppler at the various study sites will be adequately trained. This is never discussed in the summaries but the training of the techs is a very critical part of any research project to detect CCSVI. One worries that detection will be a major problem due to lack of operator competency.

Another significant problem is the inclusion of researchers who have strong ties to the drug industry. You just don’t want such compromised individuals anywhere near research which has the potential to adversely affect the drug industry in a very big way. Such conflicts of interest need to be scrupulously avoided. The presence of Freedman as part of the Ottawa research is a cruel joke and an affront to science. We need objective people doing the research not those who want to vindicate their claims that CCSVI is a hoax.

I would note this research, when it is all done and published, will not bring us any notable understanding that we don’t already have today. This is classic stall research which will delay any real research which will test the efficacy of CCSVI treatment. That is the question at hand, not whether or not persons with MS have CCSVI. As I have always said, it will be at least a decade if not longer before the needed research is done to determine the efficacy of CSSVI relief. This is exactly what the neurologists and MSSOC want to happen.

They play act that they are doing something on CCSVI to appease their supporters but ensure nothing of any significance or newness gets accomplished by way of miniscule grants for projects which address questions for which we already have the answer. Of course at the same time MSSOC, NMSS and the neurologists will piously preach that persons with MS should not be tested or treated for CCSVI until they have done the proper research. With the type of research and funding amounts of this round, this may take 20 years rather than 10.

At least MSSOC didn’t disappoint me and they maintained their dedication to ensuring no effective treatments for MS. The sad thing is many people will think they are actually acting in the best interests of persons with MS despite the fact nothing could be farther from the truth.

From the NMSS website:






No one else in the world understands how to do a vascular ultrasound of venogram?

thanks for the info on the teams, Patient. That's encouraging. My main concern is that the groups are headed up by neuros who are on the clinical advisory board for the NMMS...and have a vested interest in the status quo. Not incredibly objective. But you are right, the MRV and doppler technology is not exclusive to Italy..although it's still in its infancy. I think it's time to fund vascular doctors to study CCSVI. Maybe that needs its own society--like the one Dr. Haacke just started.
cheer

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