I'll start with some lighter material which would get this deleted as off topic if this were not a blog. A little gentle humor is not misplaced when emotions run high. We'll see how it relates as we go on.
There have recently been reports of a major security breach at Anthem involving data on millions of patients. The consequences are still developing. While this did not include actual credit card numbers or private medical data, it did include quite a bit of billing information.
But, this common everyday news report is merely prologue to my story.
When I passed a warning to someone I know, I got in return a story about an operation on his knee which was carefully planned in advance, based on an MRI. (High-tech stuff!) After he recovered, he was interested in seeing objective evidence of the resulting improvement. This led to the revelation that the first MRI had been done on another patient with the same last name and similar knee problem. (Fortunately, the scan was actually of the same-side knee.) There had been considerable "on the fly" planning during the operation, once they opened him up and saw the knee did not match. He had been unaware because literally unconscious.
What we both realized was that the system crackers had obtained data which would have shown the MRI surgeons were using to plan had been billed to a different patient. This would have put them ahead of that surgical team.
Now, I'm envisioning a whole new range of "Internet services" possible when attackers are able to use electronic medical record systems better than doctors.
One doctor to whom I told this story had experience in correcting errors propagating through medical records after an electronic sex-change. It was not easy. He has suggested that the way to get gender right is to put a full-frontal nude photograph of the patient on the front of the chart.
Note: this problem was created without the assistance of malicious system crackers.
The difference between what any damn fool knows, what highly-trained professionals know, and what is actually implemented can be as dramatic as dealing with the wrong patient or gender. Since the IOM report on ME/CFS sketches diagnostic criteria which have not yet been implemented we are quite some distance from the finish line, and cheering is premature.
Here's a quote from the IOM report to illustrate what bothers me:
This shows how the clinical details, which we have yet to see, can have overwhelming influence. Based on current estimates of major depressive disorders, an incautious application of this criterion could add millions of cases to the patient population, so that research cohorts would be dominated by people with primary depressive disorders. The CCC, with details spelled out and years of clinical experience, has been able to cope with the problem without wholesale addition of large numbers of depressed patients, without other indications of ME, to confuse issues.
The criteria in the IOM report are simple and easy to implement only if we assume well-intentioned clinicians can apply them without falling into the above error. They are cheap to implement only if you do not count the cost of the recommended work-up to eliminate known confounding diseases. Predictable efforts to control costs could easily turn this into another exercise in intuitive application of "vast clinical experience" which has been derived from making the same mistakes repeatedly.
A great deal of Internet activity about the IOM report has centered on opinions about the new terminology Systemic Exercise Intolerance Disease (SEID), which is preferable to Chronic Fatigue Syndrome (CFS) or Post-Exertional Neuro-Immune Syndrome (PENIS).
My own opinion of the terminology is that medicine can work with labels that are completely ridiculous without batting an eye. Consider malaria ("bad air") and influenza ("influence" of malign winter stars.) The common term polio is derived from a 19th-century coinage combining Latin polio ("gray") with Greek terms for "marrow" and inflammation. The full term indicates an inflammation of "gray marrow" which does sort of describe infection of the spinal cord, though this is only one form of the disease. The common term is simply Latin for gray, and essentially meaningless.
Before myalgic encephalomyelitis came into use, first as benign myalgic encephalomyelitis, then, with the realization the disease could be disabling for life, dropping the term benign, the most common term in the literature was epidemic neuromyasthenia. We are now in a situation where it is nearly impossible to trace such epidemics because of mobile populations and the 6-month delay needed for diagnosis. This might result in the disease being called neuromyasthenia, if we did not have the term neurasthenia used for psychological problems. (Note: prior to Charcot's definition in 1868, multiple sclerosis was also called neurasthenia, and this may also have been applied to ALS. This almost coincided with the definition of neurasthenia by Beard in 1869. Even Beard did not go the full psychological route followed later. Terms like "neurosis", "psychosis" and "functional mental illness" did not exist, let alone "somatization". They didn't even try to use the term "medically-unexplained symptoms" because scarcely anything had an established etiology.)
While dropping CFS is a good idea, this isn't going to fool anyone in medicine, particularly when the report describing the condition devotes a large section to fatigue. Dropping ME has less to do with clinical precision than erasing history, as Chinese emperors used to do. Various powers that be would love to get out of the bind in which patient outrage for 30 years of obfuscation and obstruction places them. They are generously willing to forget the time spent blaming patients for the problem, and any evidence there was a recognized clinical entity prior to this detour. They want to restart the clock for literature searches in 2015. This will show that responsible authorities took wise actions which led to an appropriate response in a reasonable time. They definitely do not want people asking why there was a workable clinical definition already existing at the time the CDC produced an unworkable one in 2005, or why doctors treating such patients felt the need to construct such criteria to replace those foisted on them in 1994.
Concerning attempts to "erase history" I have also noted that, while the report mentions the U.K.'s Dr. Ramsay repeatedly, there is a very peculiar omission of several names of respected U.S. doctors who were officially dispatched to personally investigate epidemic outbreaks of the disease now being redefined from earlier incarnations of the institutions currently under HHS, and now promoting this report. These people published in respectable journals, were not discredited, and did not endorse the change which NIH and CDC made to dispose of the problem by creating the label "CFS": Donald A. Henderson, A. Shelokov, D. C. Poskanzer. Henderson is particularly well-known for his role in the successful global campaign to eradicate smallpox. Poskanzer went on to teach neurology at Harvard Medical School and practice at Massachusetts General. (He also investigated a reported outbreak of epidemic MS in an effort to find an infectious cause.) These were not quacks, renegades or professional light-weights. Nor were they reticent about warning of the effect of the change which created "CFS".
While any number of experts have written opinions based on literature searches, these individuals were actually there "on the ground" and in direct contact with actual patients. That ought to count for something.
At this point I feel the need to make a disclaimer that isn't likely to please everyone. I don't blame those who volunteered their time and participated in this IOM exercise, or who took time to review the findings. Theirs was an almost thankless task, given the history of the subject. What would have resulted if they had not been involved is too awful to contemplate.
(This brings up a story about a Jewish couple discussing the process which gave them the 1812 name Feigenblatt, literally "figleaf". "I thought you were going to bribe the official to get us a good name!", "I did! You don't know what it would have been without the figleaf!")
Some members of the committee may have been "useful idiots" who still haven't figured out what dysfunctional institutions can do with their work. You would have to be clinically paranoid to predict the organizational behavior which has characterized the last 30 years. In the text of the report there is a naive reference to the fact that the Fukuda definition is the most widely used, even by mutually-hostile groups. Part of the reason it was used is that it doesn't really place much constraint on diagnosticians, allowing them to follow their inclinations. The other reason people supported this official proclamation is similar to the reason people obey the law of gravity, a lack of alternatives.
Those who fought the system could expect to end up as "voices crying in the wilderness", deprived of grants, and blackballed from publication in major journals. They could also expect questions about their professional competence and trustworthiness. (This in a society which allows some very strange varieties of alternative medicine to flourish which routinely make unsubstantiated claims, yet seldom end up in court. Makes me feel like emitting a primal scream.)
There is a great deal of verbiage in the report I accept and agree with, but this does not hide the organizational motives of others behind the exercise which produced it. What we have here is a promissory note for a new definition. It has not been implemented. The clinical details needed to implement it have not been made explicit, so I can't even comment on whether or not it is possible to implement it. (Note that I am not using the term "operationalize". There is already a perfectly good English word for the purpose.)
I believe we are now at "T+16 months" since this exercise began. We have not yet seen any action which cannot simply be neglected by the powers that be. We have not seen a clinical definition. The timescale on which the report planning operates is indicated by the need to reassess the definition within 5 years. Sometime in the next five years we can expect to have a new definition, assuming it is possible to implement this preliminary version. It is doubtful such a definition can be tested within that time, at the normal pace of the institutions involved. Whatever happens then will take place in a new political administration, (which may undo whatever was done by the previous administration,) so the consequences are "somebody else's problem". Because there has been no particular effort to avoid delay, I have to assume these delays and separations of responsibility from authority serve an unstated purpose.
What I see now are good intentions and encouraging words from people who have no particular authority. I have yet to see any evidence the dysfunctional institutions which brought us to this pass will change by any process except natural attrition.
There have recently been reports of a major security breach at Anthem involving data on millions of patients. The consequences are still developing. While this did not include actual credit card numbers or private medical data, it did include quite a bit of billing information.
But, this common everyday news report is merely prologue to my story.
When I passed a warning to someone I know, I got in return a story about an operation on his knee which was carefully planned in advance, based on an MRI. (High-tech stuff!) After he recovered, he was interested in seeing objective evidence of the resulting improvement. This led to the revelation that the first MRI had been done on another patient with the same last name and similar knee problem. (Fortunately, the scan was actually of the same-side knee.) There had been considerable "on the fly" planning during the operation, once they opened him up and saw the knee did not match. He had been unaware because literally unconscious.
What we both realized was that the system crackers had obtained data which would have shown the MRI surgeons were using to plan had been billed to a different patient. This would have put them ahead of that surgical team.
Now, I'm envisioning a whole new range of "Internet services" possible when attackers are able to use electronic medical record systems better than doctors.
One doctor to whom I told this story had experience in correcting errors propagating through medical records after an electronic sex-change. It was not easy. He has suggested that the way to get gender right is to put a full-frontal nude photograph of the patient on the front of the chart.
Note: this problem was created without the assistance of malicious system crackers.
The difference between what any damn fool knows, what highly-trained professionals know, and what is actually implemented can be as dramatic as dealing with the wrong patient or gender. Since the IOM report on ME/CFS sketches diagnostic criteria which have not yet been implemented we are quite some distance from the finish line, and cheering is premature.
Here's a quote from the IOM report to illustrate what bothers me:
This shows how the clinical details, which we have yet to see, can have overwhelming influence. Based on current estimates of major depressive disorders, an incautious application of this criterion could add millions of cases to the patient population, so that research cohorts would be dominated by people with primary depressive disorders. The CCC, with details spelled out and years of clinical experience, has been able to cope with the problem without wholesale addition of large numbers of depressed patients, without other indications of ME, to confuse issues.
The criteria in the IOM report are simple and easy to implement only if we assume well-intentioned clinicians can apply them without falling into the above error. They are cheap to implement only if you do not count the cost of the recommended work-up to eliminate known confounding diseases. Predictable efforts to control costs could easily turn this into another exercise in intuitive application of "vast clinical experience" which has been derived from making the same mistakes repeatedly.
A great deal of Internet activity about the IOM report has centered on opinions about the new terminology Systemic Exercise Intolerance Disease (SEID), which is preferable to Chronic Fatigue Syndrome (CFS) or Post-Exertional Neuro-Immune Syndrome (PENIS).
My own opinion of the terminology is that medicine can work with labels that are completely ridiculous without batting an eye. Consider malaria ("bad air") and influenza ("influence" of malign winter stars.) The common term polio is derived from a 19th-century coinage combining Latin polio ("gray") with Greek terms for "marrow" and inflammation. The full term indicates an inflammation of "gray marrow" which does sort of describe infection of the spinal cord, though this is only one form of the disease. The common term is simply Latin for gray, and essentially meaningless.
Before myalgic encephalomyelitis came into use, first as benign myalgic encephalomyelitis, then, with the realization the disease could be disabling for life, dropping the term benign, the most common term in the literature was epidemic neuromyasthenia. We are now in a situation where it is nearly impossible to trace such epidemics because of mobile populations and the 6-month delay needed for diagnosis. This might result in the disease being called neuromyasthenia, if we did not have the term neurasthenia used for psychological problems. (Note: prior to Charcot's definition in 1868, multiple sclerosis was also called neurasthenia, and this may also have been applied to ALS. This almost coincided with the definition of neurasthenia by Beard in 1869. Even Beard did not go the full psychological route followed later. Terms like "neurosis", "psychosis" and "functional mental illness" did not exist, let alone "somatization". They didn't even try to use the term "medically-unexplained symptoms" because scarcely anything had an established etiology.)
While dropping CFS is a good idea, this isn't going to fool anyone in medicine, particularly when the report describing the condition devotes a large section to fatigue. Dropping ME has less to do with clinical precision than erasing history, as Chinese emperors used to do. Various powers that be would love to get out of the bind in which patient outrage for 30 years of obfuscation and obstruction places them. They are generously willing to forget the time spent blaming patients for the problem, and any evidence there was a recognized clinical entity prior to this detour. They want to restart the clock for literature searches in 2015. This will show that responsible authorities took wise actions which led to an appropriate response in a reasonable time. They definitely do not want people asking why there was a workable clinical definition already existing at the time the CDC produced an unworkable one in 2005, or why doctors treating such patients felt the need to construct such criteria to replace those foisted on them in 1994.
Concerning attempts to "erase history" I have also noted that, while the report mentions the U.K.'s Dr. Ramsay repeatedly, there is a very peculiar omission of several names of respected U.S. doctors who were officially dispatched to personally investigate epidemic outbreaks of the disease now being redefined from earlier incarnations of the institutions currently under HHS, and now promoting this report. These people published in respectable journals, were not discredited, and did not endorse the change which NIH and CDC made to dispose of the problem by creating the label "CFS": Donald A. Henderson, A. Shelokov, D. C. Poskanzer. Henderson is particularly well-known for his role in the successful global campaign to eradicate smallpox. Poskanzer went on to teach neurology at Harvard Medical School and practice at Massachusetts General. (He also investigated a reported outbreak of epidemic MS in an effort to find an infectious cause.) These were not quacks, renegades or professional light-weights. Nor were they reticent about warning of the effect of the change which created "CFS".
While any number of experts have written opinions based on literature searches, these individuals were actually there "on the ground" and in direct contact with actual patients. That ought to count for something.
At this point I feel the need to make a disclaimer that isn't likely to please everyone. I don't blame those who volunteered their time and participated in this IOM exercise, or who took time to review the findings. Theirs was an almost thankless task, given the history of the subject. What would have resulted if they had not been involved is too awful to contemplate.
(This brings up a story about a Jewish couple discussing the process which gave them the 1812 name Feigenblatt, literally "figleaf". "I thought you were going to bribe the official to get us a good name!", "I did! You don't know what it would have been without the figleaf!")
Some members of the committee may have been "useful idiots" who still haven't figured out what dysfunctional institutions can do with their work. You would have to be clinically paranoid to predict the organizational behavior which has characterized the last 30 years. In the text of the report there is a naive reference to the fact that the Fukuda definition is the most widely used, even by mutually-hostile groups. Part of the reason it was used is that it doesn't really place much constraint on diagnosticians, allowing them to follow their inclinations. The other reason people supported this official proclamation is similar to the reason people obey the law of gravity, a lack of alternatives.
Those who fought the system could expect to end up as "voices crying in the wilderness", deprived of grants, and blackballed from publication in major journals. They could also expect questions about their professional competence and trustworthiness. (This in a society which allows some very strange varieties of alternative medicine to flourish which routinely make unsubstantiated claims, yet seldom end up in court. Makes me feel like emitting a primal scream.)
There is a great deal of verbiage in the report I accept and agree with, but this does not hide the organizational motives of others behind the exercise which produced it. What we have here is a promissory note for a new definition. It has not been implemented. The clinical details needed to implement it have not been made explicit, so I can't even comment on whether or not it is possible to implement it. (Note that I am not using the term "operationalize". There is already a perfectly good English word for the purpose.)
I believe we are now at "T+16 months" since this exercise began. We have not yet seen any action which cannot simply be neglected by the powers that be. We have not seen a clinical definition. The timescale on which the report planning operates is indicated by the need to reassess the definition within 5 years. Sometime in the next five years we can expect to have a new definition, assuming it is possible to implement this preliminary version. It is doubtful such a definition can be tested within that time, at the normal pace of the institutions involved. Whatever happens then will take place in a new political administration, (which may undo whatever was done by the previous administration,) so the consequences are "somebody else's problem". Because there has been no particular effort to avoid delay, I have to assume these delays and separations of responsibility from authority serve an unstated purpose.
What I see now are good intentions and encouraging words from people who have no particular authority. I have yet to see any evidence the dysfunctional institutions which brought us to this pass will change by any process except natural attrition.
