It is all beginning to happen again, the neurologists and MS society are taking command of everything to do with a vascular disease. My fear of these people taking over a registry and after care, I have been fighting this criminal injustice to people with MS, (if that is what they have been diagnosed with,) for 14 months
The seven studies that we are supposed to be patient for there completion will take years to complete, if you read them you will see in many of them, they plan to start with 30-50 people and if there should be reason to go further they will set up more studies with 300-400 people no time limit to these, does anyone really know whether they have all been started? The MS society is very vague when asked this question.
I spoke up against clinical trials, because I knew if we were able to find something that would back the neurologists to the wall, they would then consent to clinical trials as they know it would take a year or more to set up and years to complete. They would take charge and any committee of experts would have nothing to do with a vascular disease and would make sure CCSVI NEVER gets to see the light of day.
What is the MS society going to do with this information pass it on to the vascular experts!! I think not, we will never know what they are doing, I do not trust them as if they become in charge of this info, by many of you giving them your info it will go straight to the neurologists who will say,( “ we have studied the registry the MS society has collected and studied the results many people have had from the procedure for CCSVI and find there is not enough solid proof that this procedure helps people with MS so therefore we cannot accept the procedure should go ahead.!!!!!) How are neurologists who have only ever spoken against CCSVI ever going to help people who need after care?
MS society, Neurologists and Health Ministers are ignoring everything we are saying they are just thinking up ideas that make it look as if they are doing something. For all the letters I and so many have written replies are down to nil. They never even mention that CCSVI is a vascular disease, I wonder why!
Any registry, study, or committee should have vascular experts, people who have had this procedure, and a neurologist, all should be free of a conflict of interest. MS societies and Neurologists should not be leading anything to do with CCSVI.
I posted a letter on this site I wrote to the Ministers of health, asking if they believe people had been misdiagnosed. This is the first time in 4 months I have had replies
just standard ones but they took note I think. This is something they do not want to happen, have people say they have been misdiagnosed. Many people are afraid to say they may have been misdiagnosed in case they should lose their benefits which they have fought so hard to get. Also they fear if restonose happens they would be back to square one. What a terrible position this situation has put you all in. a CATCH 22
We will not win this fight with letters as of now, we have to think of different ways to fight them. We need to get more organized and find leaders who can organize campaigns and let us know what they want us to do. We need to find people who would sponsor ads in large city papers, we need to get the public on our side, we need to get a standard letter, half page double sided so we can give out to the public at malls, events. We need to put up notices everywhere and get the public behind us. We need the people who know how to do it, get meetings in prominent places and for all of us who can attend them and get the media there, let people hear your stories and let them know what these people are doing to you. You all do need to think about asking about misdiagnosed as this is a very big question, an autoimmune disease has never been proven. Neurologists are running on drugs, and how harmful are they? People are dying from these, CCSVI has had one death and that was lack of care from our own health system. We need to ask our families and friends to help as much as they can to fight this injustice.
WE NEED TO GET IT OUT TO THE PUBLIC THAT PEOPLE ARE SUFFERING FROM A VASCULAR DISEASE, BUT CANNOT EVEN SEE A VASCULAR EXPERT. A SIMPLE SAFE VASCULAR PROCEDURE IS HELPING MANY PEOPLE TO GET THEIR LIVES BACK BUT THE NON EXPERTS ARE FIGHTING AGAINST CANADIANS TO HAVE IT. BECAUSE THEY HAVE MS? MAYBE
I have just heard back from the college of Physicians and Surgeons,
The College does not prohibit physicians from conducting particular procedures or diagnostic tests. However, if a specific form of treatment does not have sufficient clinical evidence to support its use, the College would expect physicians to proceed in a cautious and ethical manner. Physicians who wish to perform this type of procedure should consult with a teaching hospital or academic facility, and convene a research ethics board to oversee the clinical trials of the procedure. This process allows patients access to new and developing treatments while ensuring that patient safety is not compromised in any manner.
Have they not heard that the experts already perform this procedure venoplasty, and the procedure for CCSVI the experts tell us is just an extension to what they do already. So why do they have to have clinical trials?
They do not answer any of my questions this is the same letter I have had back before.
We cannot hear from the experts as they are still silenced, because they say this vascular procedure, for a vascular disease, performed by vascular experts is not a problem for them, it is an extension to what they do everyday, it is safe and simple. They told us this right from the beginning in sub committee. They also told us research can be done long side people having the procedure done, which is the way it is done for many procedures but were ignored, Ontario health say it is not insured, it is insured from the feet to the shoulders but not where the jugular veins are, do you not find this strange?
Remember when you write a letter to anyone always refer to CCSVI as a vascular disease and a vascular procedure is performed by vascular experts.