[Note from Jim Wilson, president of the Canadian Lyme Disease Foundation:
This case is close to my heart. My daughter almost died and now has a pacemaker for the rest of her life after her heart specialist told her to go home and stop worrying about things. He said he could take any 17 yr old girl off the street and find the same stress related issues. We fired him. She had Lyme disease but he wouldn’t believe her. This poor man who lost his battle was not aware of the facts that a flu outside of flu season is not likely to be the flu and that Lyme disease should then be at the top of the list in Canada, along with viral infections. The vast majority of people never recall a tick bite or see any rash. Lyme infected ticks can be anywhere that birds fly. Birds transport ticks, and infect ticks because the disease is in their and rodents blood.
Medical and public awareness after 3 decades is dangerously poor, and full of misrepresentations.
All levels of government contribute to the millions of dollars of our taxes spent to educate physicians, nurses, and the public, but there is a serious problem. The most important stakeholders are just patted on the head.
Now, if we could improve dialogue between patients (the most important stakeholders), their experts, and the actual policy makers – who write Canadian guidelines, direct our tax funded research dollars, and who create public messaging and buy media spots – those millions of dollars could be spent in a much more beneficial way. It is unthinkable that in 2020 only token patient representation and hidden decision making is allowed, and that we and our experts are not there at the policy making and research decision making table equally represented.
Canada, we have to do a much better job and we need our politicians to stand ‘with us for us’ which is why we elected them, and to not simply go to the same medical bureaucrats paid by our tax dollars who have been misrepresenting the science for decades. They say they don’t, but we and our experts say they do, but we are always excluded while science is ignored and politicians do little to nothing. Science is not evidence until it is openly debated and replicated. This is not allowed in Canada. People needlessly die. Peoples lives are destroyed.]