Sunday, May 30, 2010
CCSVI_20100523.mpg
The Liberation War
Ashton Embry
A recent documentary referred to “The Liberation War” which has engulfed the multiple sclerosis world. I thought it might be helpful if I looked at various aspects of this conflict which is causing great distress and hard feelings. First of all, the war is between the MS patient community that wants testing and treatment for CCSVI made available in the near future and neurologists who want the availability of such testing and treatment delayed for a long time. Below I look at the reasons why each group has taken the position they have.
The MS patient community has adopted their position of immediate, positive action for a number of reasons. Most importantly, there is now solid scientific evidence that CCSVI is a key part of the MS disease process.
This interpretation is derived from four established scientific points.
1) CCSVI is associated with MS as has been documented in centres around the world, including Italy, USA, Kuwait, Jordan and Poland.
2) CCSVI has been established to be present at birth and thus it definitely precedes the MS disease process.
3) CCSVI is associated with plausible biological mechanisms which can explain aspects of the MS disease process.
4) There is abundant empirical evidence that these biological mechanisms are occurring in MS.
These four points demonstrate beyond a reasonable doubt that CCSVI is part of the MS disease process. Thus, it is only common sense to want to have a key factor in MS treated as soon as possible.
An additional push has been the numerous, well documented accounts of substantial improvements of MS symptoms, including fatigue, brain fog, balance and walking ability, enjoyed by people with MS have had CCSVI treated. I have personally witnessed such improvements in people and have no doubt that they are real.
An additional consideration is that it will take at a minimum 7-10 years to complete research on the efficacy of CCSVI relief. Given that substantial permanent disability can accumulate in 7-10 years, persons with MS do not
have the luxury to wait for such a long time for even more proof that CCSVI treatment is probably of benefit.
Finally, it must be stressed that the recommended treatment for relieving CCSVI is balloon angioplasty. This is a very safe procedure which carries very low risk.
In summary, persons with MS are seeking to be tested for a serious pathology which is strongly associated with MS - blocked veins which drain the brain. They also want to have a very safe, well established, endovascular procedure done if such pathology is found. It only seems sensible to ensure such testing and treatment are available.
Unfortunately, the availability of CCSVI testing and treatment for persons with MS is being strongly opposed by neurologists. The obvious question becomes, why would neurologists, who are charged with helping persons with MS maintain the best possible health, adopt such a seemingly harmful position when it comes to CCSVI relief.
Neurologists claim they are against CCSVI treatment at this time because they do not know if such a treatment is of benefit for persons with MS and that endovascular treatment carries some, albeit minor, risk. On the surface, such a rationale seems to have some merit. However, a logical examination of the situation shows that it is very misleading and not in the best interests of persons with MS.
Given the current data, there is a very good chance CCSVI relief will provide substantial benefits for persons with MS. Thus, if such treatments are available soon, persons with MS will experience a major gain. If the treatment is delayed, they will suffer a major loss. Of course, there is a chance that the treatment may not be of value and in this case persons with MS will suffer either a minor loss if treatment is made available (very rare, adverse effects of the treatment) or no loss or gain if it is not done.
Persons with MS are far better off with the option provided by treatment being available - a major gain versus a minor loss - as opposed to the option offered by no treatment - a major loss versus no loss or gain. The fact that the neurologists are recommending the latter option which is not in the best interests of persons with MS is troubling and needs an explanation.
One might have thought, given the very low effectiveness of the current drug treatments, the neurologists would have welcomed a new, safe, low cost and potentially effective option for MS treatment. However, I have yet to hear anything positive from the neurological community regarding CCSVI. Ever since the CCSVI cat was let out of the bag by that exceptional documentary, neurologists have mounted a venomous, anti-CCSVI campaign based on fear, half-truths and outright false statements. For example, one prominent neurologist publicly called CCSVI a hoax, implying that Dr Zamboni, an internationally recognized vascular researcher, is a fraud. Another neurologist publicly called the CCSVI documentary shoddy journalism and said the health reporter had no interest in the truth. Recently, CCSVI treatment was performed on a person in Canada and she has enjoyed major clinical improvements. The reaction of the neurologists to this event has been to demand for professional censure of the interventional radiologist who relieved the major blockages in the person’s veins and improved her health.
I could relate many more accounts of incredibly negative actions of neurologists and they all add up to the conclusion that, when it comes to CCSVI, neurologists are concerned about more than just the health of their MS patients. So what is another plausible explanation for the neurologists being so adamantly against CCSVI treatment?
When one is looking for motivation, it is can be helpful “to follow the money”. It is reasonable to assume that a person or profession will be in favour of actions which will enhance their opportunities to increase their intake of money. On the other hand, they will understandably be against actions which have the potential to decrease their future earnings.
Given that, if CCSVI treatment results in major improvements in their patients, it will replace the current drugs as the first line of MS treatment. In fact, CCSVI treatment holds the potential for many newly diagnosed people to not have to ever use an MS drug. Most importantly, interventional radiologists will replace neurologists as the primary care physicians of persons diagnosed with MS.
There can be no doubt that neurologists are aware of the above possible outcomes, all of which will negatively impact neurological practices. The other factor that has to be mentioned is that most neurologists have very close ties to the pharmaceutical industry which is currently raking in almost ten billion dollars a year from MS drugs. Such ties include substantial funding
from the pharmaceutical companies and company sponsorship of most neurological scientific and social events. Any decrease in drug sales would negatively impact the neurologists.
In summary, it is clear that the prevention of testing and treatment for CCSVI is in the best interests of neurologists and thus their actions are rational and understandable. The question for government bodies, which will ultimately decide on the availability of CCSVI treatment, is whether or not the physical health of MS patients is more important than the financial health of the neurologists. That is what the “Liberation War” is really about. Persons with MS have to remain very vocal and proactive in order to win this war.
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Excellently written Ginger! I am copying and printing it!
ReplyDeleteBev said, thank-you, Ginger for all the information. This is what we need at this time as there seems to be conflicting information going aroud. We need a united front to push this procedure through. I can't understand why Canada is so slow with this procedure. How many positive testimonials does it take for them to wake up and realize that this really does work? We are being cheated out of a life-changing treatment for our loved ones. Thanks a million!
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.
There 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.
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
Thanks for sharing a idea....Great post and informative
ReplyDeleteCCSVI Cancun