Back on January 26, I made my initial post about Laura Beckett and her predicament, followed on February 1, by this. Beckett contracted MRSA pneumonia that apparently went systemic while undergoing the ketamine coma treatment for CRPS/RSD in Germany and then, wanting to return home to be treated for the infection, struggled to find the means. She is back and, I assume, having heard nothing attesting otherwise, is doing okay. The whole affair ended up sounding ridiculously litigious.
At the time, I was irritated by things people were writing in response to her unfortunate battle with sepsis, things that were inflammatory and needlessly critical, I thought, of this promising experimental treatment. Given that I battle MRSA myself, and have learned how pervasive it is, the uproar about the quality of care in Germany seemed directed by the lowest common denominator, that of playing meanly on people's fears. I have long been an admirer of Dr. Robert Schwartzman's work in the field and harbored an unrequited desire to undergo the protocol myself.
The only thing that bothered me, really, was a strong sense that the extensive waiting list might be driven more by financial bottom lines than by intractable pain. It is pure jealousy, I suspect. So what if some of the patients undergoing the ketamine coma are "only" afflicted in one leg or one arm and one leg... and that only for a few years. So what that they seem to be born into a family of relative means? There are also a fair number who got there by fundraisers and prayers... So what that some of the coma patients are undergoing the treatment for a SECOND time?
So what that I have been suffering since May 22, 2002, and now have this crappy, shitty syndrome in "all 4s" as well as in part of my face?
So what that I am not brave enough to take what money I do have and apply it toward a potential cure? So what that I am apparently in not enough pain to do whatever I can to alleviate it?
Now there is news of a death on the Mexican front of coma research, that of a young woman undergoing a second attempt with the regimen (her first in Germany), a young woman who spent much of her time helping others with CRPS. That doesn't make her death any more tragic, it just makes it terribly emblematic.
Informed consent lies at the heart of the whole mess, of course. No one has ever made the claim that allowing yourself to be put into a coma by use of a drug with inherent dangers is not without risk to life (I would say "limb," too -- but that's kind of ridiculous, in the case of CRPS). The risk of infection and, particularly, of pneumonia, has been explained with perfect transparency.
I am now going to write something that makes me gasp at my temerity: I believe that the work being done in Mexico is seriously flawed. Not in its science, for I am not qualified to make any such judgment. But in the way it goes about promoting itself... there is something smarmy about the slick brochure style of recruitment. I get the impression that the testimonials and videos
-- typically made by attractive young white women of means -- are there to gloss over the sense of risk and danger that might make someone definitively pause.
Still, innovators in any field tend to be charismatic and what seems questionable to me is just as likely to be simple optimism and confidence. Schwartzman and Kirkpatrick obviously care deeply about their patients, would never put them in a situation of untoward risk, and are hardly responsible for these recent negative outcomes. Even so, the fallout will not be kind and the criticisms may be impossible to answer due to their foundation outside logic. It had to happen sometime.
At the time, I was irritated by things people were writing in response to her unfortunate battle with sepsis, things that were inflammatory and needlessly critical, I thought, of this promising experimental treatment. Given that I battle MRSA myself, and have learned how pervasive it is, the uproar about the quality of care in Germany seemed directed by the lowest common denominator, that of playing meanly on people's fears. I have long been an admirer of Dr. Robert Schwartzman's work in the field and harbored an unrequited desire to undergo the protocol myself.
The only thing that bothered me, really, was a strong sense that the extensive waiting list might be driven more by financial bottom lines than by intractable pain. It is pure jealousy, I suspect. So what if some of the patients undergoing the ketamine coma are "only" afflicted in one leg or one arm and one leg... and that only for a few years. So what that they seem to be born into a family of relative means? There are also a fair number who got there by fundraisers and prayers... So what that some of the coma patients are undergoing the treatment for a SECOND time?
So what that I have been suffering since May 22, 2002, and now have this crappy, shitty syndrome in "all 4s" as well as in part of my face?
So what that I am not brave enough to take what money I do have and apply it toward a potential cure? So what that I am apparently in not enough pain to do whatever I can to alleviate it?
Now there is news of a death on the Mexican front of coma research, that of a young woman undergoing a second attempt with the regimen (her first in Germany), a young woman who spent much of her time helping others with CRPS. That doesn't make her death any more tragic, it just makes it terribly emblematic.
Informed consent lies at the heart of the whole mess, of course. No one has ever made the claim that allowing yourself to be put into a coma by use of a drug with inherent dangers is not without risk to life (I would say "limb," too -- but that's kind of ridiculous, in the case of CRPS). The risk of infection and, particularly, of pneumonia, has been explained with perfect transparency.
I am now going to write something that makes me gasp at my temerity: I believe that the work being done in Mexico is seriously flawed. Not in its science, for I am not qualified to make any such judgment. But in the way it goes about promoting itself... there is something smarmy about the slick brochure style of recruitment. I get the impression that the testimonials and videos
-- typically made by attractive young white women of means -- are there to gloss over the sense of risk and danger that might make someone definitively pause.
Still, innovators in any field tend to be charismatic and what seems questionable to me is just as likely to be simple optimism and confidence. Schwartzman and Kirkpatrick obviously care deeply about their patients, would never put them in a situation of untoward risk, and are hardly responsible for these recent negative outcomes. Even so, the fallout will not be kind and the criticisms may be impossible to answer due to their foundation outside logic. It had to happen sometime.
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