Horror Statistics from the US Government

Government statistics show an appalling neglect of ME/CFIDS research which is costing the US economy billions. From the CDC and NIH web sites:

• Number of people in the US with HIV or AIDS, diagnosed or undiagnosed: 1.1 million
• Number of new Lyme cases reported in the US between 1990 and 2008: 328,128
• Number of people in the US with CFS: 1+ million (tens of millions more have "similar fatiguing illnesses" but don't meet the CDC's strict "research" criteria)

• NIH money to be spent on HIV/AIDS research in 2010: $3 billion
• NIH money to be spent on Lyme disease research in 2010: $23 million
• NIH money to be spent on CFS research in 2010: $3 million (yes, you read that right. One thousand times less than HIV/AIDS!)

• Number of categories getting more research money than CFS: 209
• Number of categories getting less research money than CFS: 2

And yet...

Dr. Nancy Klimas told the New York Times:

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. [emphasis added]

I don't mean to pick on HIV/AIDS and Lyme disease. (I was recently diagnosed with Lyme disease myself.) For perspective, here are some other examples of NIH funding categories for 2010:

• hay fever, $6 million
  
• Tourette Syndrome, $9 million
  
• Carcot-Marie-Tooth Disease, $13 million
  
• homelessness, $13 million
  
• methamphetamine, $70 million
  
• Small Pox, $98 million
  
• violence research, $191 million
• influenza, $212 million
• health effects of climate change, $300 million
• nanotechnology, $326 million
• tobacco, $326 million
• depression, $418 million
• obesity, $687 million
• networking and information technology R&D, $950 million
• drug abuse, $1 billion
• substance abuse, $1.8 billion
• health disparities, $2.7 billion
• bioengineering, $2.9 billion
• biotechnology, $5.5 billion
  

What's wrong with this picture?

Maybe the CDC's Dr. William Reeves can clarify things for us. Speaking about the recent discovery of the connection between ME/CFIDS and the XMRV retrovirus, he told the New York Times:

"If I don’t know the nature of the cases and controls, I can’t interpret the findings," Dr. Reeves said. "We and others are looking at our own specimens and trying to confirm it,” he said, adding, “If we validate it, great. My expectation is that we will not." [emphasis added]

How's that for scientific objectivity?

Hillary Johnson, author of the book Osler's Web, is very familiar with the CDC's approach to "CFS." Here's a sample of what she thinks of Dr. Reeves' opinions:

Let’s start with Reeves’ comment: "Until the work is independently verified, the report represents a single pilot study."

Blood samples from one-hundred plus patients? Over 200 healthy controls? The phylogenetic tree established? The results confirmed in THREE labs—the Cleveland Clinic, the National Cancer Institute, the WPI? Lab contaminants ruled out using three different tests? That's a pilot study?

About the XMRV researchers and Bill Reeves' "surprise" that such a prestigious journal as Science would publish their study, Hillary adds:

These collaborators didn’t just arrive on the scene last month from Mars; they knew going into this work what the CDC did to Elaine DeFreitas and her retrovirus finding in 1991. They understood the politics. They were aware of the agency’s multi-million dollar propaganda war on a million very sick people. They were prepared. They CDC-proofed this study. The rigor in the Mikovits-Ruscetti-Silverman paper was such that Science had to take the paper.

The privately funded Whittemore Peterson Institute, which led the XMRV study, says this:

Is the government doing enough for ME/CFS?

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 [emphasis added] 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 [emphasis added] chronic fatigue syndrome (ME/CFS) ranks near the bottom in funding of the over 200 diseases and conditions which the NIH funds.

Twenty-five billion dollars every year?

So what can we do about the US Government's monstrous and malicious neglect of the millions of people stricken with this disease, and their families - and cavalier disregard for those of us who foot the multi-billion dollar bill for the loss of productivity of the people disabled by this disease and the ineffective medical care available to them?

Wake up, Americans. Even if you don't have ME/CFIDS, even if you don't know anyone who has it, the official policies of the NIH and the CDC - their refusal to support serious efforts to understand and eradicate this disease - is having an impact on you right now. This disease is costing you money!

Comments welcome.

Update: In her blog, Life as we know it, Karen Campbell of CFS Facts has posted a different perspective on some of these numbers in NIH Research Statistics Show Fundamental Inequality. Karen lists a "research dollars per patient" for people suffering from various diseases, including ME/CFIDS. See also her blog "Letter Writing Time!" and this forum post.

Thanks to Hillary Johnson and her blog post about the NIH's nifty new search engine, without which I wouldn't have discovered these horrifying statistics.

Thanks to Peggy Munson and her blog post Fly Away to XAND-ado, or Where Is Elaine DeFreitas? for inspiration and background material for this post.