Friday, April 5, 2013

HAWMC Day 6: Letters to Myalgic Encephalomyelitis

Today I look at my computer screen trying to express what I would say for this assignment. I am supposed to write to my disease. What would I say? 

And honestly, other than my usual angry rant, which easily comes 10 times daily, likely more, and I just don't know what I'd say to my disease. 

See, being a nurse, I understand that getting sick is basically luck of the draw. When I got sick I was an oncology nurse. I also did bone marrow transplant. I have seen health nuts coming down with cancer, and the whole spectrum of human being types that we find on earth. No matter what you are doing with your life and your health, there is a chance that you come down with cancer. After all, we have to die of something. That's the rule, even if you die of old age. You die of that. 

What I vehemently object to is having this disease that no one sees as being serious, including physicians and governments. 

I have said it before and I will say it again. I would rather have cancer, HIV, tuberculosis, leprosy, fill in the blank, than have myalgic encephalomyelitis. Most people will protest: " Nah, you don't want to have cancer, my relative so and so got it and had the most horrible experience, was in pain, etc... "

In Canada and probably all around the world, governments fund cancer and HIV more than any other diseases. And then families of the deceased give funds to cancer foundations. In Vancouver, the BC Cancer Agency, a provincial program, owns at least 3 different buildings. One is made of glass. A research program has its own building. They probably have primates over there but I could be wrong. Research happens as patients come. And then, there are volunteers to go and pick up the patients at their door steps, and take them home when  they're done. Call this valet service. The day you get cancer, you are a hero. Neighbors will bring you baked dishes and ask you if your lawn needs to be mown. 

As for the HIV program, I hear it's just about the same. Drug cocktails will be given to IV drug users. The BC HIV/AIDS program is the lucky recipient of having a world renown physician advocate, Julio Montaner, and probably just him alone brings millions for HIV research. When the government do not have money for diseases like ME, they announce millions for HIV research the next week. 

Dr Nancy Klimas is a Miami Immunologist and well known ME expert. In her early years she cared for HIV patients. Over the years she has seen the same patients getting better and better as the anti-retroviral drug cocktails got better. She says that if given the choice between having HIV or ME, she would choose HIV. 

There is something unbelievably cruel when you go to the doctor and they tell you there is nothing they can do for you, there is no specialist to send you to, because you have this disease called myalgic encephalomyelitis (they wouldn't say that, they would say "chronic fatigue" ) that hasn't been accepted by the governments and even by the medical schools. You got to be kidding me. I got sick at 39. Some got sick in their teens, and never launched out of the nest or finished high school or landed a job. They are still living at home, in a dark quiet room, supported by their parents, bedridden and unable to attend their own care. The parents are likely struggling to get respite care because government home care do not come for a disease like this. 

So all diseases are not equal, therefore all citizens are not equal. This is discrimination. 

Just for fun (DId I just say that?)  here is a list of disease and how much funding they get per patient per year. 

per patient funding Apr2010 to Mar2013
Canadians affected CCHS 2010
Muscular dystrophy
Multiple Sclerosis
Cerebral palsy
Spina Bifida
Heart Disease
Bronchitis, Emphysema, COPD
Chronic Fatigue Syndrome
Multiple Chemical Sensitivities

Note that cancer and HIV/AIDS is not being counted, as the numbers come from the Canadian Community Health Survey, which monitors chronic conditions. However I can tell you there is about 70 000 cases of HIV/AIDS in Canada. Funding is counted in billions.  

So there you got it. I managed once more to rant and be frustrated. Advocacy and doing anything is just so, so hard for patients with ME. We have cognitive dysfunction and just sitting at the computer is an effort. It is just another reason why we are so behind and not heard, because we are just too sick to just show up. 

And this brings me back to the beginning, what would I say to my disease? Nothing. I got nothing to say. 

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