TMrox wrote:The report says "There is an overwhelming lack of scientific evidence on the safety and efficacy of the procedure, or even that there is any link between blocked veins and MS.”
If the want more scientific evidence.. well we need more research, more clinical trials. They need to notice the elephant in the room. Plenty of people have been treated for CCSVI and will continue to do so, regardless of their 'expert' opinion and warnings.
If they trully want to stop what in their eyes is nonsense, then do research. Their 'expert' opinion is just pure thin air otherwise.
I think they'll finish "studying the studies" about the same time they finish studying the AI model. I agree with the above comments that this is just stall tactics. They aint dummies. I recall a period not too long ago where the main course was NMSS flambe, for not being able to correctly spell CCSVI, let alone define it or study it. Then they agreed to study it, to the applause of many. Until it was discovered they weren't really
doing much more than handing it back to the neuros to toy around with as a pet project. They then state:
10) When will we see results from these studies?
The studies are two years in length and researchers expect to publish results in peer reviewed scientific journals as outcomes are established. The timing of data analysis, peer review and publication can vary widely and thus it is not possible to predict when results will be available.
As part of our commitment to keeping people with MS and the public informed of progress, researchers will be asked to provide 6-month interim updates to the National MS Society on their grant progress. We will post information as it becomes available.
The U.S. and Canadian MS Societies are also in discussion with the Multiple Sclerosis International Federation to establish an international CCSVI Research Coordinating Committee to consider CCSVI research that is underway around the world.
Hey, I think that's all great and all. But notice how they are lockstep with the MSS. Time and space, everyone chill out, gonna be years before we even have a clue on what direction to go in, requiring much more research and funding and papers published. That's great too, fund away, study til you drop. Keep those purse strings tight though, wouldn't want any coinage to get lost to concomitant treatment studies while the imaging studies catch up, or use currently treated patients in a simple matrix. They just turned CCSVI into another EAE.
Currently suffering patients have a wee bit less burden of proof than those who desire to have their names set in stone. For now, it is obvious that they must make their own way through the forest. Remember, the NMSS also said they were pushing the funding of studies through in record time, echoing the "effective immediately" statement.
Also in the echo chamber, from the funded studies via the NMSS we have this:
“This project will pursue four overlapped steps to develop understanding of this condition... Validating a reliable diagnostic approach and demonstrating an MS-specific association is prerequisite to any randomized, blinded therapeutic trial of venoplasty for MS.”
It all sounds great, the already-funded imaging studies are great and should be done, but the timetable is 2 years, this announcement is once again just echoing and marching lockstep with what the NMSS and MSS have already established as the course CCSVI research will take.
The rest of it is just noise. 2 years, to even begin to discuss doing any concrete interventional studies, if the imaging studies even point in that direction.
CCSVI meets the real world, take one.