First, let me say that really getting down to it would take more time than I can bear at the keyboard just now. I need to go kerflop. But I want to offer this information for our further research and consideration.
I got to thinking when I saw this post on WPI's Facebook.
I did what checking I could at the moment. A 2005 estimate stated that over 1 million Americans have HIV/AIDS. I don't know where WIP got the 1-4 million figure for ME/CFS but if it's true, there may be 4x as many people suffering from ME/CFS. Does the funding reflect this? Of course not. Why?
I believe it was Dr. Klimas who pointed out that her HIV/AIDS patients had higher quality of life than we have. Why? Years of activism that have changed the picture of AIDS funding and public understanding of AIDS. (Someone want to nab that link, to throw into this picture?)
We need to tell the US, you have fought the good fight against AIDS and it's going great. Now you need to wage a serious battle against an even bigger public health threat.
We could refer here to the AABB protocol accepting XMRV+ blood donations, to emphasize the point of public health threat.
We should certainly bring up the $ numbers. 2010 CDC Budget Right Here!
CDC's 2010 Budget gives $432 million to HIV/AIDS. Shouldn't ME/CFS get four times that amount?
I know HIV/AIDS is a sensitive topic but the stigma against HIV+ people has decreased greatly, while we are still called lazy or crazy. I think it's perfectly valid to point out the inequities in funding and demand that we get respect and research.
I got to thinking when I saw this post on WPI's Facebook.
WPI on Facebook said:
Is the government doing enough for ME/CFS? [view answer...]
NO. The Centers for Disease Control (CDC) estimates from 1-4 million people in the U.S. have chronic fatigue syndrome (ME/CFS) and that approximately 80% of chronic fatigue syndrome (ME/CFS) cases in the U.S. are undiagnosed. The average annual costs per family, including financial losses due to unemployment, are about $25,000 a year. Overall chronic fatigue syndrome (ME/CFS) is believed to cost the US economy at least $25 billion dollars a year and perhaps much more. CDC studies indicate that chronic fatigue syndrome (ME/CFS) patients as a group have disability rates similar to people with multiple sclerosis, lupus, rheumatoid arthritis, heart disease and other serious diseases. Despite its prevalence, severity and high economic costs chronic fatigue syndrome (ME/CFS) ranks near the bottom in funding of the over 200 diseases and conditions which the NIH funds.
NO. The Centers for Disease Control (CDC) estimates from 1-4 million people in the U.S. have chronic fatigue syndrome (ME/CFS) and that approximately 80% of chronic fatigue syndrome (ME/CFS) cases in the U.S. are undiagnosed. The average annual costs per family, including financial losses due to unemployment, are about $25,000 a year. Overall chronic fatigue syndrome (ME/CFS) is believed to cost the US economy at least $25 billion dollars a year and perhaps much more. CDC studies indicate that chronic fatigue syndrome (ME/CFS) patients as a group have disability rates similar to people with multiple sclerosis, lupus, rheumatoid arthritis, heart disease and other serious diseases. Despite its prevalence, severity and high economic costs chronic fatigue syndrome (ME/CFS) ranks near the bottom in funding of the over 200 diseases and conditions which the NIH funds.
I believe it was Dr. Klimas who pointed out that her HIV/AIDS patients had higher quality of life than we have. Why? Years of activism that have changed the picture of AIDS funding and public understanding of AIDS. (Someone want to nab that link, to throw into this picture?)
We need to tell the US, you have fought the good fight against AIDS and it's going great. Now you need to wage a serious battle against an even bigger public health threat.
We could refer here to the AABB protocol accepting XMRV+ blood donations, to emphasize the point of public health threat.
We should certainly bring up the $ numbers. 2010 CDC Budget Right Here!
CDC's 2010 Budget gives $432 million to HIV/AIDS. Shouldn't ME/CFS get four times that amount?
I know HIV/AIDS is a sensitive topic but the stigma against HIV+ people has decreased greatly, while we are still called lazy or crazy. I think it's perfectly valid to point out the inequities in funding and demand that we get respect and research.