"Of the MS society's statement, Dr. Lorne Brandes, an oncologist who
blogs for CTV News' Health Blog, wrote, "If their official response to
Dr. Zamboni's research was any cooler, icicles would form on their
spokespersons' lips. Why am I not surprised? These organizations are big
money operations, run by risk-adverse professionals and fundraisers who
are absolutely petrified of making a mistake and prematurely backing a
losing horse. Their interests are also heavily intertwined with those of
Big Pharma." Erika Milvy, Huffington Post
Time after time, I hear about health official and government leaders saying that until the MS Society of Canada gives it's approval for CCSVI studies they will not endorse any action to fund research. Why is then, when I have asked officials at the the MSS about this they say that they have no say in this matter and it's not up to them?
The MSS is playing a two faced game and should be ashamed that it has lost sight of it's original mission to help find a cure for MS. If they are truthful, as they so self righteously proclaim, that they would be overjoyed at losing their paid positions should a cure for MS come along, then why are they hesitating to publicly state that they are 100% on board with CCSVI research? They grudgingly gave 2.4 million in grants for research recently, but it was given out to neurologists who are interested in DISPROVING a link between CCSVI and MS. Why isn't the MS Society championing MS sufferers by addressing the blatant discrimination against MS patients who are being denied angioplasty of their jugulars and azygos in Canada when it is ALREADY an approved treatment? Whether a link between MS and CCSVI is established, folks with MS have dangerously blocked veins that need treatment now! Why isn't the MSS of Canada backing MS patients rights for this treatment? Why do they continually call the treatment NEW and EXPERIMENTAL when they know angioplasty has been talking place for years? In my opinion,they are taking advantage of our naive politicians and public in order to control the CCSVI situation and manipulate information to increase their odds of survival and financial security.
If they are to be taken at their word that that their opinion holds no sway then why did they bother issuing a position statement to politicians in June? ( written by John Clifford Chair, Ontario Division Board of Directors of the MSS) In this letter Mr. Clifford tries to downplay the public demand for CCSVI research and testing by calling it experimental. His overall tone is negative and completely inappropriate for an agency that purports to seek a cure and represent patients with this disease. They should be encouraging politicians to push for testing and treatment on compassionate grounds and making the history and damage of drug therapy clear so that it can be considered in reference to this new possibility and presenting the history and safety record of angioplasty, on veins, so that politicians understand that the potential value is well worth the minimal risk of the treatment.
I am asking all Canadians to write to their politicians, newspapers, TV news and radio and let them know how disgusted we are with the MS Society. For years they have been the "go to guys" for all things MS. They clearly do not have our best interests in mind anymore, and like a dying horse, should be quickly euthanized and put out of our misery.
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Once again Ginger you hit the nail on the head! These dudes will now fight us until they have done their biased research and will undermine Dr. Zamboni at every possible turn. The CMSS has lost all its' credibility and that is now publicly known by thousands who are disgusted with them too. I would love to see their books after May next year. Until then they will not and do not give a flying crap about the people who they made their bogus mission statement to. I certainly will be writing to whoever will listen but I am not sure if I will be able to hold back my real thoughts. I know, "Honey is better than Vinegar" but because of their attitude I think they are worse :(
ReplyDeleteOh Ginger, I'm with you 100%. I'm off to Costa Rica as soon as I have the $$ in place, hopefully soon. What the MSS seems to be forgetting is that we, the patients, the fund-raisers, are seeing the disdain with which we're being treated. And it's easier for us to simply discontinue fund-raising efforts if we're not going to reap the benefits of the treatment that we're asking for.
ReplyDeleteA shame this was so vociferously mishandled. It may be the death of the MSS of Canada...
-A.D.
Hi Ginger, I am off to Germany to be tested and treated if the blockage is discovered. Germany pays for all of their citizens to be corrected, what is wrong with Canada? I will be charged 1500 Euro for the testing and 4000 Euro for the Angioplasty at the University Hospital in Frankfurt. I am thrilled that Germany is doing this research as they have Siemens electronics and they could possibly be future manufacturers of a proper stent.
ReplyDeleteIt is amazing that 46 countries recognize this procedure, yet, not North America. We must follow proper and malfunctioning protocol.
I agree with you Giner, the MSS is A DYING horse and we, the people, need to cut the control of the society back! Don't fundraise for them, cut off the flow of money and see how quickly they jump ship. Only then we will be sure that those still there are there for the right reasons. All Rona's should be educated, in a non-confrontational way that the NSS does not seek to cure and only to maintain status quo. Ironic that the NSS sounds like a dictitatorship! This was one of the first things I've noticed!
ReplyDeleteCould you show me where you found the information that only researchers who are interested in disproving the theory are being funded? I find it hard to believe Dr. B. Banwell is out to disprove this. If you've met her you wouldn't have posted this accusation.
ReplyDeleteWait until all of us that have recieved the angio start to claim the expenses at tax time! The Canadian government is going to go into a sever panic as there are MANY OF US who have had to jump ship and look for help elsewhere. The costs will be astronomical! They think they've got problems now...
ReplyDeleteThe government won't care if you claim this expense at tax time as it is a tax credit and will amount to very little money.
ReplyDeleteHow many letters and demonstrations and petitions and news stories have there been? I get the feeling the entire momentum is fading
Yesterday a report in the Epoch Times stated there are two recent studies that found no link between MS and blocked veins. So we are going nowhere fast!
I AM SO UPSET BY ALL THIS, CANADA NOT GOING FASTER ON THIS LIBERATION PROCEDURE. IF WE WAIT TILL CANADA DOES IT HERE IT WILL BE TOO LATE FOR A LOT OF US. I KNOW IT IS THE DRUG COMPANYS THAT HAVE CONTROL, THEY WILL LOSE A LOT OF MONEY. BUT JUST THINK IF THEY DO THE PROCEDURE AND IT WORKS, JUST THINK OF ALL THE PEOPLE THAT CAN GO BACK TO WORK AND GO OF THE GOVERNMENT FUNDING. I HOPE TO HAVE THIS DONE, IN ANOTHER COUNTRY. WHAT A SHAME WE HAVE TO GO TO ANOTHER COUNTRY. JOAN
ReplyDeleteI was diagnosed with Multiple Sclerosis back in 1983. I can hardly walk now and it seems my condition worsens every day. When I first heard about the Liberation procedure and its results from a friend, I thought United States would be the first to conduct the trials. I could never imagine the corruption involved. I ended up applying for this simple procedure in Poland and waiting.. The other options were to get it done in India. After researching the internet extensively, I came across http://www.ccsviclinic.ca/ . They are screening for CCSVI in Fargo, ND and have very affordable packages for the Liberation procedure in India. I called (404)461-9560 and spoke to their nurse administrator Lisa whose priceless support made me realize that we are not alone in the fight against MS. They are screening within the US and Canada, their medical travel package includes flight arrangements and help with the visas, world class accommodation and meals within their hospitals, the liberation procedure, a stent if needed, medications necessary, a site-seeing tour, Pre-and post-procedure supervision, Full medical file including copies of charts, screens, CDs of Venograms, blood work, EKGs, etc. Post Procedure Screenings, follow-up and consultation with surgeons for the next 6 months and so many other provisions Lisa told me about, I can’t recall however you might be able to find out more on their site.. http://ccsviclinic.ca/?page_id=564 . They are providing all of this at just $13000 as compared to the other companies that charge something like $20000 just for the procedure. You may also contact Lisa by emailing her at apply@ccsviclinic.ca or calling her on (404)461-9560. I am getting liberated mid-October and I am so very thankful to everyone at CCSVI Clinic for making this happen!
ReplyDeleteIt is estimated that the failure rate of the “liberation therapy” may be 50% or higher, even through the most experienced and best-known surgeons in Poland and Albany, NY. As more and more people receive the therapy there is growing concern amongst patients that the procedure needs to include a post-procedure protocol that is more effective than simply releasing the patient from the hospital or clinic within hours or a day of the procedure.
ReplyDeleteCCSVI Clinic Physicians have applied for an International Ethics Board study approval entitled: “PROSPECTIVE, OPEN-LABEL STUDY OF THE SAFETY, EFFICACY AND RE-STENOSIS RATES IN MS PATIENTS WITH CCSVI UNDERGOING ENDOVASCULAR TREATMENT WHO RECEIVE AN ENHANCED HOSPITAL AFTERCARE PROTOCOL. Important previous studies on non-MS patients who have had the same venous angioplasty indicate that it’s critical to position and movement control patients post-procedure, monitor them for days afterward in the hospital with various imaging techniques, and re-treat if necessary. CCSVI Clinic is already sponsoring patients for this protocol with a 10-day stay in the hospital where patients will be imaged daily, post procedure. If there is evidence of re-occlusion, they will be taken back to the OR and re-treated. Past studies of non-MS patients with the same venous blockages have noted a cascade of failure points distally in venous vessels post angioplasty, and the hypothesis proposes that the study on MS patients will produce the same results. Once home, patients will be screened and interviewed at regular intervals by CCSVI Clinic Physician Researchers for several years after the treatment to study the changes and make comparisons between those who have followed the protocol and others who have had the procedure on an outpatient basis.
It should be mentioned that our research is under much scrutiny and attack from elements that are trying to control the industry and the dialogue. A well-organized campaign to discredit CCSVI Clinic and our research is underway in the social media. We would ask you to have the independence of thought to see through their campaign of deceit.
Regular research updates will be published on the CCSVI Clinic website http://www.ccsviclinic.ca/ . Questions about participation may be directed toward the CCSVI Clinic administration at 1-888-419-6855.
It is estimated that the failure rate of the “liberation therapy” may be 50% or higher, even through the most experienced and best-known surgeons in Poland and Albany, NY. As more and more people receive the therapy there is growing concern amongst patients that the procedure needs to include a post-procedure protocol that is more effective than simply releasing the patient from the hospital or clinic within hours or a day of the procedure.
ReplyDeleteCCSVI Clinic Physicians have applied for an International Ethics Board study approval entitled: “PROSPECTIVE, OPEN-LABEL STUDY OF THE SAFETY, EFFICACY AND RE-STENOSIS RATES IN MS PATIENTS WITH CCSVI UNDERGOING ENDOVASCULAR TREATMENT WHO RECEIVE AN ENHANCED HOSPITAL AFTERCARE PROTOCOL. Important previous studies on non-MS patients who have had the same venous angioplasty indicate that it’s critical to position and movement control patients post-procedure, monitor them for days afterward in the hospital with various imaging techniques, and re-treat if necessary. CCSVI Clinic is already sponsoring patients for this protocol with a 10-day stay in the hospital where patients will be imaged daily, post procedure. If there is evidence of re-occlusion, they will be taken back to the OR and re-treated. Past studies of non-MS patients with the same venous blockages have noted a cascade of failure points distally in venous vessels post angioplasty, and the hypothesis proposes that the study on MS patients will produce the same results. Once home, patients will be screened and interviewed at regular intervals by CCSVI Clinic Physician Researchers for several years after the treatment to study the changes and make comparisons between those who have followed the protocol and others who have had the procedure on an outpatient basis.
It should be mentioned that our research is under much scrutiny and attack from elements that are trying to control the industry and the dialogue. A well-organized campaign to discredit CCSVI Clinic and our research is underway in the social media. We would ask you to have the independence of thought to see through their campaign of deceit.
Regular research updates will be published on the CCSVI Clinic website http://www.ccsviclinic.ca/ . Questions about participation may be directed toward the CCSVI Clinic administration at 1-888-419-6855.
It is estimated that the failure rate of the “liberation therapy” may be 50% or higher, even through the most experienced surgeons in Poland & Albany. As more people receive the therapy there is growing concern amongst patients that http://www.ccsviclinic.ca/?p=765 the procedure needs to include a post-procedure protocol that is more effective than simply releasing the patient from the hospital within a day.
ReplyDeleteIt should be mentioned that our research is under much scrutiny & attack from elements that are trying to control the industry & the dialogue.We would ask you to have the independence of thought to see through their campaign of deceit. http://www.ccsviclinic.ca/?p=783Regular research updates will be published on the Clinic website. Questions about participation may be directed toward the Clinic administration at 888-419-6855.
ReplyDeleteThere is a difference between responsible reporting and what Melissa Martin chose to write about the CCSVI Clinic in this article. She was in possession of factual information and documents that put the CCSVI Clinic in a favorable light but chose to withhold the information she received from the physicains and researchers at CCSVI Clinic that would have conflicted with her agenda to smear our reputation in order to sensationalize her story. At no time did anyone from the CCSVI Clinic pressure patients into going to India for the Liberation Procedure. She should have considered that the one single person who made that claim clearly had her own agenda because she was disheartened by her 'borderline' results. We simply provide information to people about our enhanced hospital stay and aftercare program should a patient decide to have the procedure. You can't pressure someone to make an important decision about their health and all of our literature clearly states that. These MS patients are more knowledgeable about the CCSVI condition and about the options for treatment than most physicians are. To suggest that they can be pressured into a decision to have the procedure done in India is ludicrous. Patients who have signed up to be part of our open-ended study on the safety and efficacy of an enhanced aftercare protocol to reduce the rate of re-stenosis versus having the procedure on an outpatient basis (which may be contributing to long term failure of the procedure) have done so to ensure that they are getting the best care possible and because they want to be part of the important work we are doing for MS patients. http://www.ccsviclinic.ca/
ReplyDeleteCCSVI Clinic Receives Joint IRB Approval for Aftercare Protocol Study.
ReplyDeleteDr. Don Simonson, the Principal Investigator for the study agrees; “Of course there are other reasons that patients restenose, depending on the condition of their veins in the first place, and operator inexperience, so we have designed a study that isolates the aftercare protocol because we feel it may be at least as important, and in any case well worth studying.”
CCSVI Clinic is already sponsoring patients for this protocol with a 10-day stay in the hospital where patients will be imaged daily, post procedure. If there is evidence of re-occlusion, they will be taken back to the OR and re-treated. To comply with the IRB approval, once home, patients will be examined and/or surveyed at regular intervals by a Principle Investigator (PI) for several years after the treatment to study the changes. Patients will have regular consults with the surgeon who performed their procedure as part of the protocol.
More and more MS patients are reporting initial success (including vascular and some neurological differences) as a result of the venous angioplasty (liberation therapy) but then regression to previous symptoms sometimes within weeks post-procedure. It is estimated that the failure rate of the “liberation therapy” may be 50% or higher, even through the most experienced and best-known surgeons. Consequently, there is increasing concern amongst patients that the liberation therapy hypothesis needs to include a post-procedure protocol that is more refined than simply releasing the patient from the hospital or clinic within hours or a day of the procedure. If the study hypothesis is correct, it means that there are many other considerations that indicate a post-procedure stabilization period, re-examination, and re-treatment if necessary.Please log on to http://ccsviclinic.ca/?p=830 for more information.
I really impress from Your Blog. for more information about ANGIOPLASTY SIDE-EFFECTS please click on this link below :
ReplyDeleteANGIOPLASTY SIDE-EFFECTS
Angioplasty has proved to be a boon for patients suffering from heart diseases in the last 2-3 decades. It is efficient, economical, time-saving and involves less fuss. But in spite of that, there are a few side-effects of angioplasty as well. Let’s have a look at what could be the possible risks involved in and how to overcome them.
After 6 months of offering stem cell therapy in combination with the venous angioplasty liberation procedure, patients of CCSVI Clinic have reported excellent health outcomes. Ms. Kasma Gianopoulos of Athens Greece, who was diagnosed with the Relapsing/Remitting form of MS in 1997 called the combination of treatments a “cure”. “I feel I am completely cured” says Ms. Gianopoulos, “my symptoms have disappeared and I have a recovery of many functions, notably my balance and my muscle strength is all coming (back). Even after six months, I feel like there are good changes happening almost every day. Before, my biggest fear was that the changes wouldn’t (hold). I don’t even worry about having a relapse anymore. I’m looking forward to a normal life with my family. I think I would call that a miracle.”
ReplyDeleteOther recent MS patients who have had Autologous Stem Cell Transplantation (ASCT), or stem cell therapy have posted videos and comments on YouTube. www.youtube.com/watch?v=jFQr2eqm3Cg.
Dr. Avneesh Gupte, the Neurosurgeon at Noble Hospital performing the procedure has been encouraged by results in Cerebral Palsy patients as well. “We are fortunate to be able to offer the treatment because not every hospital is able to perform these types of transplants. You must have the specialized medical equipment and specially trained doctors and nurses”. With regard to MS patients, “We are cautious, but nevertheless excited by what patients are telling us. Suffice to say that the few patients who have had the therapy through us are noticing recovery of neuro deficits beyond what the venous angioplasty only should account for”.
Dr. Unmesh of Noble continues: “These are early days and certainly all evidence that the combination of liberation and stem cell therapies working together at this point is anecdotal. However I am not aware of other medical facilities in the world that offer the synthesis of both to MS patients on an approved basis and it is indeed a rare opportunity for MS patients to take advantage of a treatment that is quite possibly unique in the world”.
Autologous stem cell transplantation is a procedure by which blood-forming stem cells are removed, and later injected back into the patient. All stem cells are taken from the patient themselves and cultured for later injection. In the case of a bone marrow transplant, the HSC are typically removed from the Pelvis through a large needle that can reach into the bone. The technique is referred to as a bone marrow harvest and is performed under a general anesthesia. The incidence of patients experiencing rejection is rare due to the donor and recipient being the same individual.This remains the only approved method of the SCT therapy. For more information visit http://ccsviclinic.ca/?p=838