It is 2 Am and I am sitting at my desktop, in a daze. I almost fell off my bed when I read the news. It felt unreal. Now all of a sudden, we are legit? We are not malingerers anymore? We don't have to avoid doctors, or worse, speak really loud because we don't feel heard (or perhaps we thought they were deaf)?
The British Columbia minister of health has announced a 2 millions $ funding for chronic diseases such as Lyme, ME/CFS and fibromyalgia. 2 millions dollars is just about half of the yearly budget of the CDC CFS program
The Globe and Mail calls these diseases "rare". Rare? Well the BC government thinks there was only 30 cases of Lyme disease in British Columbia. However they are wrong since physicians have steered clear of diagnosing and reporting Lyme disease, and let's say that the canadian blood test is not sensitive at all.
We all know that fibromyalgia is not rare at all, the last number I saw was 340 000 in Canada. Everyone knows someone with this mysterious disease. But no one has paid attention.
The latest numbers for ME/CFS in Canada was 330 000. For British Columbia, apparently 28 000 people reported having the disease. Rare disease you said? Well we certainly won't rely on the government to count the cases of Lyme disease... It could be embarrassing.
The great news is a new clinic is coming, with a study, apparently. They even said they suspect infectious disease involved. You're telling me. They didn't mention XMRV, but I think they are thinking of breaking the news slowly, so they don't shock the citizens. Who knows, them citizens could get scared.
My thoughts are, what kind of clinic, what kind of studies are they planing? Could they please don't get in the habit of calling it chronic fatigue? Could they please not read anything from the UK, especially papers, or anything that has Wellcome Trust on it? Could they please phone Judy Mikovits tomorrow? She is expecting their call? Could they please collaborate with the Li- Ka Shing Institute of Virology in Alberta? Can they please leave the psychiatrist well away from us? Can they include patients in the decision making, to ensure that the best health care possible can be provided? And my personal opinon, leave alternative medicine behind, focus on science. Focus on evidence-based medecine.
The BC Cancer Agency model is very successful, in fact other countries come and visit here in Vancouver to copy the model. Essentially it is a provincial program with protocols for every types of cancer and accessible for everybody in the province. Attached to the BC Cancer Agency is a separate building that offers alternatives for cancer patients. From diet to therapeutic touch, to supplements and everything in between. It is a pay for service, but patients that desire that kind of service are happy to pay and are treated just the way they want to be treated.
Since here in Canada we have socialized health care, I believe that the care that is paid by the system will consist of medical doctors and real science. At least I hope.