The amount of funding for ME research in Canada is now zero.
This is down from last year's whopping .11 per patient. Other chronic illness are funded (eg. Parkinson's funding is $428.16 per patient) so why is ME funding non-existent? It's difficult to understand why our government continues to ignore us, given even the basic facts:
It's not for lack of trying. Many within the ME community have tried extensively to raise this concern and awareness with our elected government officials with no success.
Shameful.
I have personally tried to arrange meetings with my MP and other than her standard auto-reply, I have heard nothing back. I think these folks forget they were elected to represent their constituents -- all their constituents, not just the ones they feel are worthy.
We have money to hand out for just about every other cause, but no help available for the folks who helped fund those very causes.
This is totally unacceptable and our Canadian government needs to do better.
That said, I recently had the opportunity to take part in a Canadian University research study about ME. It was conducted out of Laurentian University details here and funded out of the pocket of these Scientists.
Realizing ME patients are quite often too ill to leave their homes, these scientists, Andrew and Max, came to our homes to conduct the testing. How cool is that? They were wonderful guys all the way around. They were knowledgeable about ME (this alone was refreshing! I didn't have to convince them ME was real or even educate them on it. They knew! This hardly ever happens!). They explained the testing process well, walked me through the requirements and were concerned throughout the testing time for my well-being. After the testing was complete, they showed me my scans and explained what they saw.
A big thank you to Andrew, Max and Laurentian University! Looking forward to following your research into this area!
Canadian Government -- please take note!
This is down from last year's whopping .11 per patient. Other chronic illness are funded (eg. Parkinson's funding is $428.16 per patient) so why is ME funding non-existent? It's difficult to understand why our government continues to ignore us, given even the basic facts:
- ME is extremely debilitating
- There are 580,000 Canadians living with ME
- More people are living with ME than there are living with Multiple Sclerosis, Alzheimer's, Parkinson's, Epilepsy and AIDS combined.
- ME isn't going to magically disappear. Numbers are continuing to grow.
- More info here
It's not for lack of trying. Many within the ME community have tried extensively to raise this concern and awareness with our elected government officials with no success.
Shameful.
I have personally tried to arrange meetings with my MP and other than her standard auto-reply, I have heard nothing back. I think these folks forget they were elected to represent their constituents -- all their constituents, not just the ones they feel are worthy.
We have money to hand out for just about every other cause, but no help available for the folks who helped fund those very causes.
This is totally unacceptable and our Canadian government needs to do better.
That said, I recently had the opportunity to take part in a Canadian University research study about ME. It was conducted out of Laurentian University details here and funded out of the pocket of these Scientists.
Realizing ME patients are quite often too ill to leave their homes, these scientists, Andrew and Max, came to our homes to conduct the testing. How cool is that? They were wonderful guys all the way around. They were knowledgeable about ME (this alone was refreshing! I didn't have to convince them ME was real or even educate them on it. They knew! This hardly ever happens!). They explained the testing process well, walked me through the requirements and were concerned throughout the testing time for my well-being. After the testing was complete, they showed me my scans and explained what they saw.
A big thank you to Andrew, Max and Laurentian University! Looking forward to following your research into this area!
Canadian Government -- please take note!
Andrew and Max preparing patient and setting up for testing in ME research study
Balance ...... despite the chaos!
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