You're 47 years old, reasonably healthy. One day you get a bad case of the flu and you don't recover. You're in serious pain all the time. You have so little energy that getting to the bathroom and back wipes you out completely.
You go to the doctor. She runs a bunch of tests and diagnoses you with a form of cancer that tends to strike people around your age. Then she tells you the bad news: you have six months to live.
The prognosis gives you enough time to say your goodbyes and, with a lot of help, to get your affairs in order. Unfortunately, your quality of life isn't very high. Most of the time you feel miserable. You die six and a half months later, a few weeks shy of your 48th birthday.
Now imagine a different scenario. You're 22 years old, reasonably healthy. One day you get a bad case of the flu and you don't recover. Symptoms are the same as in scenario #1. You go to many doctors until, a few years later, one finally discovers that you have ME/CFS.
Even with a diagnosis, there's not much anyone can do for you. You go on disability because you're too sick to work and eke out the best existence you can.
You die of cancer just a few weeks shy of your 48th birthday.
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Quiz time. Which disease is likely to get more attention and funding?
My guess, and probably yours, is the first one. It makes sense, right? We have to find a cure for that disease right away. It kills its victims within months. The clock is ticking!
And this is part of ME/CFS's PR problem. ME/CFS can kill people, but it does so more slowly, and more stealthfully. A 2006 study by Jason et al found:
The median age of death for cancer in the United States is 72 (Reis et al., 2003, versus an average age of 47.8 for the CFS sample), the average age of death for suicide in the United States is 48 (Centers for Disease Control, 2003, versus an average age of 39.3 for the CFS sample), and the average age of heart failure is 83.1 (CDC, 2003, versus an average age of 58.7 years for the CFS sample). What this suggests is that those from this memorial list who did die of cancer, suicide, and heart failure were considerable younger than what would have been expected from the general population ...The full paper is here.
If we had to choose, most of us would rather be victim #1 than victim #2.
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Today is the last day of ME/CFS Awareness Month. It has been rewarding to raise awareness about ME/CFS, but I'll be honest with you. I'm tired of raising awareness. I want to skip to the part where everybody is already freaking aware so we can concentrate on raising MONEY.
This disease gets less funding than just about any other, and it isn't going to cure itself.
The clock is ticking.
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The Whittemore Peterson Institute conducts research on ME/CFS and other neuro-immune diseases. As yet it receives no federal funding. To support them, go to wpinstitute.org and click the Donate button.