Tuesday, May 12, 2015

#May12BlogBomb event

I suppose I should slip in just under the wire on this one.
Here we are, more than 30 years after the twin epidemics and how far have we gotten?
No treatment.
No cure.
Too many people still thinking it's all in our heads and we should just exercise our way back to health. Or eat a raw food diet.  Or only eat cooked food to kill the germs in raw food.  Or only eat certain foods.  Or try talk therapy to get rid of a virus.
Because we get 1/2 of 1% of the per-patient funding that cancer gets.  You can't find answers you're not looking for.  Cancer has a 95% cure rate; CFS has a cure rate of zero.  Zip, zilch, nada, not one patient has ever been cured.  Yet they want us to feel sorry for someone who's going to take a couple months off work (with automatic Disability benefits), puke a couple days after chemo, and then go back to work full-time, because that person has "[shudder] Cancer". 
Let me tell you, it really rattled the cage of a friend undergoing chemo when she described how she felt the next day (and by Day 3 she was feeling well again) and I told her that I feel that way every day.  Every. Single. Day. For. Years.  I wish I could tell myself "endure this for 48 hours, and then you'll feel fine for a couple weeks until your next treatment."  I feel that awful without seeing a light at the end of the tunnel, without being able to tell myself that I'm suffering in order to be cured.  I'm just suffering because I have no other options other than suicide.  And a lot of my fellow patients have taken that option because they can't stand the suffering without any promise of hope for a cure.
I was not joking earlier today when I suggested that the government should pay us reparations, just as they did to the Japanese citizens who were placed in camps during WWII.  By the time I retire, I'm going to have lost more than a million dollars in income, for the sole reason that my government would rather see me suffer endlessly than put money into research funding to get me well enough to return to full-time work.  But I'm not holding my breath for the government to admit that the real problem is not that patients are "too lazy to work" but the government's refusal to fund proper research.

1 comment:

Sally Burch said...

Link list for 2015 #May12BlogBomb