The power of patients networking

Dave deBronkart learned that he had renal cancer in 2006. From his doctor and from many internet resources, he heard that his death was imminent. Then, he hooked into an internet network of renal cancer patients, where he learned about a scientific (but not well-known) treatment that offered him a chance.  He pursued the treatment and had a great result. He became an e-patient, a patient who became empowered because he acquired access to important data. Now, 4 years later, he gave the following TED talk, and you'll see that he's very much alive and kicking. I recent had a similar experience, though not in nearly as serious a situation as Dave's. I was diagnosed by two doctors with "tennis elbow." I don't play tennis, but I play the guitar, and I suspect that that strumming was the precipitating cause for me. About three months ago, before I noticed any problem, I assumed that tennis elbow was irritating, but that it quickly went away when you stopped engaging in the causative activity.   The two doctors I consulted told me otherwise. They said that tennis elbow lasted for as long as a year, or more, and that it can be disabling. They said that you simply take aspirin and rest it, that it is a long drawn out problem and that there is not much else you can do about it. I "confirmed" this first-hand, when I stopped playing the guitar for two months, but the condition did not get any better. I bought two types of arm wraps at the drug store and I wore one or the other for weeks. My arm remained extremely weak. For instance, I could not lift a heavy book with the affected arm. When someone shook my hand, I felt excruciating pain at the elbow. Like Dave, I refused to stop searching for a better answer. I took to the internet, and about three weeks ago I found what appears to be a cure. It's a rubber bar that costs $15: [caption id="attachment_18575" align="aligncenter" width="300" caption="Thera-Band FlexBar"][/caption] I've been doing the simple exercises for two weeks (click this link and watch the short video demonstrating the exercise); it's amazingly simple and it takes less than 10 minutes per day. My pain has decreased by 95% and my strength has probably tripled, even though I'm taking only one over-the-counter Naproxen per day. This is a scientifically-designed and tested remedy, which suits me fine.   In fact, the device and exercise was being tested in a double-blind study that was so incredibly successful that the experimenters stopped the study in mid-stream and gave all of the patients rubber bars.  It pains me to think of all of the victims of "tennis elbow" out there who are suffering with the pain needlessly because their doctors are telling them what my doctors told me. I have no interest in any form of voodoo, such as homeopathic medicine, and you'll hear a lot about these unscientific treatments on the Internet.  This post is not about unproven and unscientific remedies.  What you heard from Dave (and from me) is that there are often effective and proven remedies out there, and that you will not learn about from your doctor.  I agree with the main point made by Dave, that we need better methods for sharing information regarding successful treatments that are already out there.  E-patients, unite!

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The cost of America’s warmongering

President Barack Obama recently suggested that America's wars had cost $1 trillion. Reuters suggested that Obama is not being forthright:

Staggering as it is, that figure grossly underestimates the total cost of wars in Iraq, Afghanistan and Pakistan to the U.S. Treasury and ignores more imposing costs yet to come, according to a study released on Wednesday. The final bill will run at least $3.7 trillion and could reach as high as $4.4 trillion
The study referred to is this one, by Costs of War.  Unlike your local newspaper or your local TV news, this is website that pulls no punches. Here are some of the findings:
  • While we know how many US soldiers have died in the wars (just over 6000), what is startling is what we don’t know about the levels of injury and illness in those who have returned from the wars. New disability claims continue to pour into the VA, with 550,000 just through last fall. Many deaths and injuries among US contractors have not been identified.
  • At least 137,000 civilians have died and more will die in Afghanistan, Iraq, and Pakistan as a result of the fighting at the hands of all parties to the conflict.
  • The armed conflict in Pakistan, which the U.S. helps the Pakistani military fight by funding, equipping and training them, has taken as many lives as the conflict in neighboring Afghanistan.
  • Putting together the conservative numbers of war dead, in uniform and out, brings the total to 225,000.
  • Millions of people have been displaced indefinitely and are living in grossly inadequate conditions. The current number of war refugees and displaced persons -- 7,800,000 -- is equivalent to all of the people of Connecticut and Kentucky fleeing their homes.
    How disproportionate has been America's response to the 9/11 attacks?  Reuters offers this:

    What followed were three wars in which $50 billion amounts to a rounding error. For every person killed on September 11, another 73 have been killed since.

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    New graphic cigarette warns might discourage smokers

    And then again, according to this article in Discover, they might not. Check the comments to see the counter-research, as well as ever-more skirmishes in the ongoing American culture-wars. To the extent that graphic warnings don't discourage smokers, I'll rack this up as one of the many many many counter-intuitive things scientists have discovered about human beings.

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    Bring out the corporate flags to celebrate the Fourth of July

    It's almost the Fourth of July, the date that red-blooded Americans thank God that they are not British. And, increasingly, we give homage to our corporate sponsors. I was walking by the St. Louis Arch today, and noticed all of those American flags flapping in the wind in anticipation of the big St. Louis Independence Day Fair at the arch grounds. I looked more closely and noticed that flapping along with the American flags were the flags of a corporate who's who. AT&T, Pepsi, Boeing, Peabody Coal, InBev, U.S. Bank and many others, letting us know how inter-twined government is with corporate America these days. After they noticed that there were 50 stars, what would the founding fathers have thought had they seen those American flags touching the flags of corporations? They would probably have asked why those corporate flags were there, and we'd need to explain that corporations own Congress and control the elections. I doubt that that would satisfy them.

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    Environmental Working Group shines light on “farm bill” failures

    What is the purpose of the federal "farm bill"? It's for the benefit of America's farm families and it ultimately benefits all Americans, right? Guess again. It's loaded with pork and corporate welfare. The Environmental Working Group has set the record straight, in this list of 10 points you need to know about America's "farm bill." These are real eye-openers, good reasons for you to condemn many parts of the most recent farm bill and to demand reform in the upcoming version of the "farm bill."

    The Environmental Working Group knows that you care about the affordability and availability of healthy food and clean drinking water. So we wanted to make sure you know as much as you can about the massive piece of legislation that guides federal agriculture policy. Congress rewrites the farm bill every five years or so. It drives federal spending for farm, nutrition and conservation programs and is the only important piece of environmental legislation that Congress is almost certain to enact over the next 18 months. In just a single year – 2010 – farm bill programs spent $96.3 billion. With so much on the table, here’s our list of the 10 most important things you should know about the farm bill: 1) The farm bill doles out billions of taxpayer dollars in subsidies to the largest five commodity crops: corn, cotton, rice, wheat and soybeans. Those payments go out, regardless of need, and they mostly fail to help the nation’s real working farm and ranch families. In fact, since 1995, just 10 percent of subsidized farms – the largest and wealthiest operations – have raked in 74 percent of all subsidy payments. 62 percent of farmers in the United States did not collect subsidy payments, according to the U.S. Department of Agriculture. 2) The Obama Administration says fruits and vegetables should fill about half of our plates during meal times. Yet, only a tiny fraction of the farm bill funding goes to programs that support healthy fruits and vegetables, and many of these programs have no budget going into the next farm bill, which is up for renewal in 2012. 3) Some 90,000 checks went out to wealthy investors and absentee land owners in more than 350 American cities in 2010, despite the so-called “actively engaged” rule adopted in the 2008 farm bill. This rule was designed to ensure that federal payments go only to those who are truly working the land. It hasn’t worked. 4) A handful of other commodities also qualify for government support, including peanuts, sorghum and mohair. Dairy and sugar producers have separate price and market controls that are highly regulated and can be costly to the government. 5) The flawed subsidy system creates perverse incentives for farmers to grow as much industrial-scale, fertilizer- and pesticide-intensive crops as possible, with harmful effects on our environment and drinking water – and the availability of organic food in your grocery store. [More . . . ]

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