ME/CFS Funding by CDC and numbers vs. HIV/AIDS funding and numbers

[creekfeet]

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.

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.

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.

 

[creekfeet]

I found a Klimas quote but not a link to its original source. It has been quoted a lot. I think the original source was the NY Times.

...now there’s proof that inflammation occurs in the brain and there’s evidence that patients with this illness experience a level of disability that’s equal to that of patients with late-stage AIDS, patients undergoing chemotherapy, or patients with multiple sclerosis.

Oh wait oh wait oh wait, here's the one I was thinking of, right here in the Readers Ask at NY Times.

But I hope you are not saying that C.F.S. patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.

I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it.

 

[creekfeet]

I really truly have to go kerflop now: I am one solid ache. But I just had this amazing flash of totally ridiculous fantasy. Suppose ACT-UP could be persuaded to help us, as a sister retroviral illness? What if they could be so brave as NOT to make a big fuss when people dare to compare us to their sacred cow? What if they could actually extend support and help publicize our need? Call me Pangloss, but it is nice to dream that we could live in the best of all possible worlds.

 

[Dolphin]

I really truly have to go kerflop now: I am one solid ache. But I just had this amazing flash of totally ridiculous fantasy. Suppose ACT-UP could be persuaded to help us, as a sister retroviral illness? What if they could be so brave as NOT to make a big fuss when people dare to compare us to their sacred cow? What if they could actually extend support and help publicize our need? Call me Pangloss, but it is nice to dream that we could live in the best of all possible worlds.

Might be good. But a community of our size (with that many people with the llness) should be able to make a difference by ourselves also if they won't help.

 

[creekfeet]

True, tomk. We do have the numbers. And if we haven't got the energy, maybe we can get family and friends to take action on our behalf.

 

[Dolphin]

True, tomk. We do have the numbers. And if we haven't got the energy, maybe we can get family and friends to take action on our behalf.

Exactly. I have been housebound nearly bedbound for 15 years. There have been some things I have achieved and I’ve called in others for other things e.g. fund-raising.