Saturday, October 31, 2009

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.

10 comments:

  1. Excellent post.

    Sadly the $23million for Lyme disease research mostly will be going to IDSA cable trying to prove it is rare and easy to cure. If it were so rare and easy to cure why would they need the research money, let the money go to those researchers who are helping chronic Lyme patients.

    I am sorry to hear you have also been diagnosed with lyme there are a surprisingly large number of ME/CFS patients with Lyme in the mix.

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  2. Thank you!

    This is certainly interesting - and shocking. I haven't seen any estimates about this in Norway, but I know that ME/CFS must cost this country millions as we have a very good healthcare system. I get paid approx. 65 % of the salary I got before I got sick + insurance money from my latest employer. I've been ill for over 10 years now. It took nearly 8 years to get a diagnosis, during that time I got 3 years of college education as an attempt to get me back to work.

    All in all, I've cost this country A LOT of money. If they only would research and find solutions so I can get treatment, I'd love to go back to working again. So far they don't seem very interested. Not a sound from the health authorities after the recent news from WPI. Hopefully this will change soon.

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  3. This is a shock, and I'm disgusted with where CFS stands in the list for funding. No wonder I gave up looking at CFS info on the web years ago. It's too angering and depressing.

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  4. Thank you for such a concise listing of so much great information all in one post. I'll be linking to this article from my own blog!

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  5. Lothiane makes a good point about how much we're costing the government when we're sick. My lifetime lost income will be close to $2,000,000. Some years, that's half of the amount spent on CFS research. And that's just one person!

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  6. The true loss to the economy because of CFIDS is terribly underestimated. If we were to do a careful analysis we would see that the loss to the economy because of this disease is probably into the high billions and not the figures that the CDC uses, which are quite low. If instead of keeping people sick and paying for SSA/Medicare they had used heavy research funding at the start of this disease - and at about the same time as AIDS/HIV hit - quite possibly a cure for CFIDS could have been achieved and economic loss would be far less. THE AIDS/HIV people do not die anymore and with good medications can live a normal life and work. That was because of the enormous amount of funding for all types of research. But this was not the case for CFIDS - again, CFIDS hitting at the same timeframe as AIDS/HIV. Why the huge difference in funding between the two diseases? At this point it is possible that CFIDS is also caused by a Retrovirus, much like AIDS/HIV.Why was research on CFIDS not in line with the research for AIDS/HIV??? Why is the US and UK governments keep funding so low? What do they NOT want the public to find out? What do they already know but don't want us to know? The numbers provided in this blog force the question to be asked - no begged. WHY continue to let CFIDS sick continue to be disabled and then die early? WHY?

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  7. From www.cdcchatter.net. Examples of insane waste, fraud and abuse - money that could have been used for research - esp. for CFIDS.
    =====================================
    Did anyone go to jail from the Coburn Investigation (CDC Waste, Fraud and Abuse at Work)???

    Some examples in the report of CDC’s spending:
    • $1.7 million — including terrorism funds — on a Hollywood liaison program, which happens to be run by a former employee (pg. 87);
    • $45 million for conferences, including those featuring prostitutes, protests, and beach parties (pgs. 48 - 60);
    • $30,000 employee saunas in a new $200,000 fitness center that also includes mood-enhancing lightshows and $3,500 worth of zero-gravity chairs (pg. 15);
    • $5 billion spent over seven years on HIV/AIDS prevention funding, and yet the U.S. still sees 40,000 new cases each year, with no decrease in infection rates for over a decade (pgs. 23-37);
    • Syphilis prevention funds used to feature a porn star’s presentation (pg. 44);
    • HIV/AIDS prevention funds spent on a transgender beauty pageant (pg. 45);
    • $250,000 spent so two former employees could help build staff morale, (pgs. 100 - 101);
    • $5.1 million on “audio visual integration” in the new Thomas R. Harkin communications and visitor center, including a giant 70-foot-wide by 25-foot-tall video wall of rear-projection and plasma television screens showcasing agency vignettes (pg. 8);
    • 110 CDC employees traveled to two international AIDS conferences, when buying retroviral drugs with the trip funds could have prevented mother-to-child AIDS transmission for more than 115,000 infants (pgs. 50 & 52);
    • New Hawaii office opening soon, announcement made by Senator from Hawaii who oversees agency’s funding (pg. 18);
    • $335 million on ads to fight childhood obesity… kids saw the ads, whether or not the ads affected their behavior is another question (pgs. 69 - 71);
    • $128,000 in CDC bioterrorism funds spent by L.A. County on trinkets such as letter openers, whistles, magnets, mouse pads, flashlights, pens, and travel toothbrushes (pgs. 106 - 110).
    The report also includes:
    • A detailed graph showing CDC’s yearly budget from 1995-2007, which has increased by more than 350% (pg. 7); and
    • A chart showing yearly CDC’s HIV/AIDS funding from 2001-2007, which has more than doubled during that time (pg. 115).

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  8. Today no one needs to suffer with CFIDS, treatment is already known - www.cfids.info

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  9. DR Oluku is the only Dr who could ever get my HIV-AIDS cured with his healing spell, i have tried almost everything but i could'nt find any solution on my disease, despite all these happening to me, i always spend alot to buy a HIV drugs from hospital and taking some several medications but no relieve, until one day i was just browsing on the internet when i come accross a great post of !Michelle! who truly said that she was been diagnose with HIV and was healed that very week through the help of these great powerful healing spell doctor, sometime i really wonder why people called him Dr Oluku the great, i never knew it was all because of the great and perfect work that he has been doing that is causing all this. so i quickly contacted him, and he ask me some few questions and he said a thing i will never forget that anyone who contacted him is ! always getting his or her healing in just 6 hours after doing all he ask you, so i was amazed all the time i heard that from him, so i did all things only to see that at the very day which he said i will be healed, all the strenght that has left me before rush back and i becomes very strong and healthy, this disease almost kills my life all because of me, so i will to hospital to give the final test to the disease and the doctor said i am HIV negative, i am very amazed and happy about the healing Dr Oluku gave to me from the ancient part of africa, you can email him now for your own healing too at: drolukuspellhome@gmail.com

    ReplyDelete
  10. DR Oluku is the only Dr who could ever get my HIV-AIDS cured with his healing spell, i have tried almost everything but i could'nt find any solution on my disease, despite all these happening to me, i always spend alot to buy a HIV drugs from hospital and taking some several medications but no relieve, until one day i was just browsing on the internet when i come accross a great post of !Michelle! who truly said that she was been diagnose with HIV and was healed that very week through the help of these great powerful healing spell doctor, sometime i really wonder why people called him Dr Oluku the great, i never knew it was all because of the great and perfect work that he has been doing that is causing all this. so i quickly contacted him, and he ask me some few questions and he said a thing i will never forget that anyone who contacted him is ! always getting his or her healing in just 6 hours after doing all he ask you, so i was amazed all the time i heard that from him, so i did all things only to see that at the very day which he said i will be healed, all the strenght that has left me before rush back and i becomes very strong and healthy, this disease almost kills my life all because of me, so i will to hospital to give the final test to the disease and the doctor said i am HIV negative, i am very amazed and happy about the healing Dr Oluku gave to me from the ancient part of africa, you can email him now for your own healing too at: drolukuspellhome@gmail.com

    ReplyDelete