Despicable Vulture Scumbags
Today I'm going to depart from the usual format and answer a single email that I received. You get a lot of email when you do a show like this — most of it praise or thanks for helping a friend; a bit of it negative, which is usually both obscene and anonymous; and once in a while something that really gets my attention. The following email was of this latter variety:
Well listener, when I got your email, it really affected me. I could easily imagine myself in your friend's position, and in your position as well. Sadly your position is not unique. There are many such small personal tragedies around the world, and many people asking your same questions.
Amyotrophic lateral sclerosis, or ALS, is better known as Lou Gehrig's disease, and maybe best known these days as Stephen Hawking's disease. The sclerosis is a degenerative hardening of nerve cells in the brain and spinal column, resulting in painless weakness and atrophy of muscles, often leading to complete paralysis. Only one cause is known, a mutation responsible for only a few percent of cases. The average life expectancy is only two to five years after diagnosis, though five percent live 20 years. Stephen Hawking has survived 45 years so far. Over 5,000 people develop ALS in the United States each year, most of them white males over 40. In some cases, the progression stops, and a few cases have even reversed. ALS progresses differently in virtually every patient, and is thus exceedingly difficult to diagnose. There is only one approved treatment, the drug Rilutek, which has been shown to slow the progression of ALS in some cases and prolong life by a few months. No other treatments so far have been found to have any beneficial effect, though a number of clinical trials for other drugs are ongoing.
The use of a wet cell battery in New Age healing is the invention of Edgar Cayce, an early American celebrity psychic from the early 20th century. Cayce was best known for giving psychic readings on the sick, and developed a following of believers in psychic healing which still persists to this day. Virginia's Association for Research and Enlightenment, which claims tens of thousands of members, still promotes spiritual and psychic healing through methods developed by Cayce. One of these is the use of a wet cell battery. To use it, you mix chemicals in a bucket to create a weak battery. Next you mix the special "medicines", gold, silver, spirits, or iodine, in a secondary jar. A wire loops through these "medicines" and you apply the electrodes to your spine. You're supposed to do this for 30 minutes a day, and Cayce said months to years of daily application is required to get results. The claimed mechanism is "to introduce energy and medicinal vibrations directly into the body". There is no hypothesis behind the device suggesting how or why it might be useful.
The battery kit itself is $200 from this company Baar, but then there's a gigantic list of accessories and chemicals that you'll need a steady stream of, and these appear to account for the ongoing costs mentioned in the email.
The term "medicinal vibrations" is linguistic nonsense with no scientific or medical counterpart, so it was difficult to search for any research on this. I was not able to find any clinical trials or any research of any kind on a reputable source such as PubMed, into the efficacy of wet cell batteries for either wellness or treating disease. The Cayce web page for the battery makes no claims about its powers, although there is a long list of personal testimonials from customers of the Baar wet cell battery for all kinds of diverse conditions like fatigue, inner harmony, repolarization, and cold hands. Oddly, the authors of these testimonials managed to realize their positive results in far less than the "months to years" that Cayce said was required, often just days. Baar does point out that the device is not intended to diagnose, treat, cure or prevent any disease, and makes no claims about its usefulness. Apparently they leave that to people like whoever it was who recommended this product to your friend. Nevertheless, if Baar is knowingly selling this device to someone who believes it may treat ALS, they are indeed despicable vulture scumbags.
I'd like to read you the response of Dr. Stephen Barrett, who runs Quackwatch, to one of his frequently asked questions: "Isn't it better to at least try an unproven alternative therapy, than to simply give up, roll over and die?" Dr. Barrett says:
There's one thing that I would add to Dr. Barrett's suggestion, and it's a matter of personal choice. I'd probably participate in clinical trials, though I'd do it with the understanding that they are rarely successful, and with an awareness of potential side effects. Future ALS sufferers may benefit from my participation. Clinical trials are always free to the participants, and that's another important distinction between proper medical trials and quack treatments. The purveyors of quack nonsense like the wet cell battery always, always charge money. The ALS Association website maintains a large list of clinical trials in which your friend might choose to participate. At best, he may find relief if one of these treatments pans out. At worst, his participation will further our knowledge of ALS and get us a step closer to the day when it's treatable.
ALS is no picnic, but it's also not the end of the world. Your friend has three small children who are always going to look up to him as their guiding light. He has their youth sports leagues to watch, their high school graduations, their first dates, their first broken hearts, their weddings. He has friends like you watching out for him, hanging out with him, taking him to the movies. How much of that will he be around to enjoy? Nobody knows. But then, you or I might get hit by a bus tomorrow. In that sense we all have the same concerns, and we can't all stop living our lives just because we don't know what tomorrow brings.
It is the nature of human beings to come and go. Passing on is neither unnatural nor unexpected. It's the way the world works. Death is not the culprit. The obscenity here is that someone is getting $200 a month richer off of your friend's tragedy. Someone who never went to medical school. Someone who probably couldn't tell you anything about the mechanisms of ALS. Someone who, I promise you, has never successfully treated ALS, and who has no plausible chance of ever doing so.
You've said you're reluctant to dash your friend's hopes. But hope does not come in the form of a worthless piece of pseudoscience. Hope comes from a realistic chance, no matter how small — get him into a clinical trial if he wants to work the problem. The demonstrably false hope sold by Baar and other Edgar Cayce followers is a ripoff and a lie. Your friend, and everyone like him who needs a chance and a break and some hope, deserves better.
You asked my advice, so I'll give it, controversial though it may be. Having ALS doesn't give your friend any special dispensation to cause additional grief to his family and friends. He still has obligations to them, he's not above being wrong, and he's not the only person affected by this. Tell him he's making a bad situation worse for those close to him. Make sure he has the tools to make an informed decision. Share your thoughts with his other family and friends. Be part of the solution and don't enable the problem.
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