FROM THE SUBLIME TO THE RIDICULOUS, by CCSVI Ontario
Until November 2009, many Canadians with MS went to MS Clinics attached to hospitals, listened to the MS neurologists, took the drugs and other “therapies” (e.g., chemo) they prescribed, donated to the MS Society and waited for the inevitable.
Dr. Paolo Zamboni changed our world in November 2009. For the first time, we had a glimmer of hope. For the first time, we had a plausible explanation for our “rogue” immune system’s attacks. For the first time, we though our doctors (MS and GPs) would leap on something that might help at least some of us. We thought we would have support from the MS Society and from our governments, provincial and federal.
We quickly lost our innocence. We learned that money and established dogma speak much louder than patient care.
So, we established advocacy groups and used social media to further our cause; we did our homework and our research; we shared our information. We became medical refugees and went outside Canada for CCSVI treatment.
But we went beyond CCSVI, which the self-styled MS experts have ignored for 150 years. We researched studies on other conditions that mimic MS. We found plausible causes for our symptoms in Lyme and a respiratory infective agent, Chlamydophila pneumoniae (CPn –not the sexually transmitted Chlamydia), both of which doctors have known about for decades, and their connection to CCSVI; we researched tests and treatment. We shared our information and our progress. We researched nutrition and supplements and, again, shared our information. Unfortunately, those who are newly diagnosed with MS are not being given any of this information.
Consequently, with little to no help from the medical establishment, we are now light years ahead of the self-styled MS experts in our understanding of MS and its possible causes. We are light years ahead in knowledge of tests, treatments, nutrition and supplements. We are light years ahead in knowing the importance of sharing information and in knowing that treatment of any medical condition should be multi-disciplinary. Ridiculous? Yes. Shameful? Yes.
As a group, most of us think differently about medical care now. We know there are exceptions in the medical community and we celebrate their honesty and courage in going against the tide. As to the rest – they may find themselves confronted with patients who no longer accept the status quo and who will not hesitate to say “You’re fired”.
So, we go back to November 2009. We have much to thank Dr. Zamboni for, not the least of which is waking us up to the fact that, in Canada, we have to manage our own health and take action despite the road blocks and obstacles placed in our way.
source:
https://www.facebook.com/notes/ccsvi-ontario/from-the-sublime-to-the-ridiculous/435684383169138