Friday, February 11, 2011
An invisible disease.
Tons have it.
No money to find out why.
I looked up some statistics and found out that between 3 and 5 million people have Fibromyalgia and over one million people have chronic fatigue in the United States. You would think with those kind of numbers there would be adequate funding for research. We are talking numbers in the MILLIONS here and there's very little money to find out why or what causes these illnesses.
To put it in perspective, and not to diminish the severity of the illness, MS afflicts somewhere between 350 to 500,000 people in the U.S. and there is funding galore.
We have numbers in the MILLIONS and no one knows why or cares why we are afflicted. The research that is being done is filled with controversy. Once there was testing done with the XMRV retrovirus and it's correlation to Chronic Fatigue all hell broke loose. One group tries to disparage studies being done and forums are filled with vile comments. Now groups are being put together with doctors who don't believe in the XMRV retrovirus and, get this, dentists. What the hell are dentists doing on the team?
These illnesses are debilitating. Something, whether it be an assault on the immune systems or caused by physical trauma, is flipping the pain switch to the on position. Once in the on position it isn't being turned off. We are called lazy, neurotic, malingerers and depressed. We are not believed.
We live in a state of crisis management.
So how do we get funding, or more precisely, adequate funding?
I guess until Fibromyalgia and Chronic Fatigue reaches up and bites someone important in the old proverbial fanny, no one is going to care. The problem is we look normal. We can smile and laugh but it's through the veil of pain. No one cares unless it's visible. To be sick we have to look sick and we don't look sick. Symptoms can change from day to day and sometimes from minute to minute. Doctors either don't believe us or they don't want to deal with us because there is no cure.
How loud do we have to yell to get something done?
We are the ugly duckling in the world of research.
We want, for once, to be the swan.