Since the disease ME forced me to become an historian I shall do my professional duty by revising errors as far as possible. Two messages that essentially all PWME can agree with appeared in the IOM report:
1. The disease is a serious physiological disease causing great harm, and
2. The disease has been substantially under-funded and deserves more research funds.
As shown in PR discussion, there are many aspects in the report that PWME criticize because they are misleading and/or false. Some of the discord is based in whether this matters or not. PWME who think it correct for advocacy groups to endorse and advance the report, like some of the commentators above, say that the errata they see can be worked around. Other PWME believe that endorsing the report with the errata intact and not criticized harms the prospects for important goals. One of the most important is the ability to gather correctly characterized cohorts for research.
I would like to highlight some errata so that people can be aware of them.
1. The IoM committee did not have the option of using the name Myalgic Encephalomyelitis. Input from one or more Federal Agencies forbade it. This fact was disclosed at a public meeting and had slipped out in private from a committee source. Dr. Bateman may well be right that calling the IOM definition ME “would have created even more confusion:” Then again, she may be wrong. We'll never know. What we do know is:
a. The government which is supposed to serve us did not want employed a name which, studies have shown, makes our disease be taken seriously.
b. The committee obeyed the government.
c. Those of us who have precisely the disease long known as ME fear greatly how we can get our causation and symptoms researched if our disease cannot be known by the original name that bears its history.
2. The Federal Agencies determined that work on ME/"cfs" is to be severed from the historic disease that evidenced itself alongside poliomyeltis and often resulted from non-polio enteroviruses. All prior wisdom, insights and treatments were flushed down the toilet when the agencies steered the entire project to eliminate all sources from before 1988. This is like teaching physics without Einstein and relativity. Whatever job the agencies wanted done, they clearly did not want it done absolutely fabulously. You can't do science without truth.
3. The 1988 cutoff also has the effect of more heavily weighting the work of the weaselly and whiter contingents of psychiatrists and psychologists, as their strenuous efforts to overweight bibliographies occurred after this date.
4.The Federal Agencies also made micro-decisions about what truths were acceptable and which were not. One result is that the IOM paper is biased against curing people. Montoya on success with Valcyte was eliminated because the group was subjectively judged "too small," whereas Straus' doubtful work condemning use of acyclovir, though it used as small or a slightly smaller group, was included. Yet Peterson and others have had great success curing younger, newer patients with acyclovir, while Montoya has restored people to function with Valcyte.
5.The IOM report did not adequately or accurately reflect the importance and nature of immunological dysfunction in ME, even as described by the very experts on the committee. Work published in the report does not match work as published elsewhere. Bias against description of ME as a disease of immune deficiency, which in part it is, dates all the way back to the 1980s, when the 1987 publication of the work of Caligiuri et al, executed at Harvard's Dana Farber with blood from Incline Village, which documented the deficiency of NK function, was written out of history by the leadership of NIH and CDC.
As a historian contemplating the historiography of "MECFS" it seems clear that a great deal of revision is necessary before the IOM paper can be considered accurately representative of PWME.
As a student of human behavior I do not consider the presence of very fine ME experts on the IOM committee to be at all contradictory with the errata in the report. For one thing, few if any humans can stand up against a tsunami with the force of all the US government and its near-monopoly on worldwide research finance behind it. For another, some errors were introduced after the committee had hurriedly announced its end. I have little sense that the committee members actually wrote the text; much less that they saw the very last changes.
As to the reviewers, there is no question of them necessarily approving what is written. That is not their job. All we can be sure of is that they read it.
At the moment the groups endorsing the IOM include some people I know to be very devoted to doing their best for patients. Yet those speaking against its endorsement are certainly equally strongly committed to obtaining the best science possible. The discrepancy is about how much can one safely overlook its flaws, for how long, under what circumstances. When and where do the ill-intentions and the manipulations behind it come back to bite? Never? Later rather than sooner? Sooner rather than later?
There is an argument to be made that there is no other flag to fly. 30 years of anti-patient government behaviour in every anglo-saxon country and across northern Europe have left us a deck of cards to play that seems entirely composed of threes of clubs.
What most seems necessary is to continue and broaden discussion of what went wrong with IOM to all PWME groups so that, when PWME fly the only flag we have, as with the Markey resolution, at least the flaws are well enough known that their details and worst damages will not survive the proof-reading.
1. The disease is a serious physiological disease causing great harm, and
2. The disease has been substantially under-funded and deserves more research funds.
As shown in PR discussion, there are many aspects in the report that PWME criticize because they are misleading and/or false. Some of the discord is based in whether this matters or not. PWME who think it correct for advocacy groups to endorse and advance the report, like some of the commentators above, say that the errata they see can be worked around. Other PWME believe that endorsing the report with the errata intact and not criticized harms the prospects for important goals. One of the most important is the ability to gather correctly characterized cohorts for research.
I would like to highlight some errata so that people can be aware of them.
1. The IoM committee did not have the option of using the name Myalgic Encephalomyelitis. Input from one or more Federal Agencies forbade it. This fact was disclosed at a public meeting and had slipped out in private from a committee source. Dr. Bateman may well be right that calling the IOM definition ME “would have created even more confusion:” Then again, she may be wrong. We'll never know. What we do know is:
a. The government which is supposed to serve us did not want employed a name which, studies have shown, makes our disease be taken seriously.
b. The committee obeyed the government.
c. Those of us who have precisely the disease long known as ME fear greatly how we can get our causation and symptoms researched if our disease cannot be known by the original name that bears its history.
2. The Federal Agencies determined that work on ME/"cfs" is to be severed from the historic disease that evidenced itself alongside poliomyeltis and often resulted from non-polio enteroviruses. All prior wisdom, insights and treatments were flushed down the toilet when the agencies steered the entire project to eliminate all sources from before 1988. This is like teaching physics without Einstein and relativity. Whatever job the agencies wanted done, they clearly did not want it done absolutely fabulously. You can't do science without truth.
3. The 1988 cutoff also has the effect of more heavily weighting the work of the weaselly and whiter contingents of psychiatrists and psychologists, as their strenuous efforts to overweight bibliographies occurred after this date.
4.The Federal Agencies also made micro-decisions about what truths were acceptable and which were not. One result is that the IOM paper is biased against curing people. Montoya on success with Valcyte was eliminated because the group was subjectively judged "too small," whereas Straus' doubtful work condemning use of acyclovir, though it used as small or a slightly smaller group, was included. Yet Peterson and others have had great success curing younger, newer patients with acyclovir, while Montoya has restored people to function with Valcyte.
5.The IOM report did not adequately or accurately reflect the importance and nature of immunological dysfunction in ME, even as described by the very experts on the committee. Work published in the report does not match work as published elsewhere. Bias against description of ME as a disease of immune deficiency, which in part it is, dates all the way back to the 1980s, when the 1987 publication of the work of Caligiuri et al, executed at Harvard's Dana Farber with blood from Incline Village, which documented the deficiency of NK function, was written out of history by the leadership of NIH and CDC.
As a historian contemplating the historiography of "MECFS" it seems clear that a great deal of revision is necessary before the IOM paper can be considered accurately representative of PWME.
As a student of human behavior I do not consider the presence of very fine ME experts on the IOM committee to be at all contradictory with the errata in the report. For one thing, few if any humans can stand up against a tsunami with the force of all the US government and its near-monopoly on worldwide research finance behind it. For another, some errors were introduced after the committee had hurriedly announced its end. I have little sense that the committee members actually wrote the text; much less that they saw the very last changes.
As to the reviewers, there is no question of them necessarily approving what is written. That is not their job. All we can be sure of is that they read it.
At the moment the groups endorsing the IOM include some people I know to be very devoted to doing their best for patients. Yet those speaking against its endorsement are certainly equally strongly committed to obtaining the best science possible. The discrepancy is about how much can one safely overlook its flaws, for how long, under what circumstances. When and where do the ill-intentions and the manipulations behind it come back to bite? Never? Later rather than sooner? Sooner rather than later?
There is an argument to be made that there is no other flag to fly. 30 years of anti-patient government behaviour in every anglo-saxon country and across northern Europe have left us a deck of cards to play that seems entirely composed of threes of clubs.
What most seems necessary is to continue and broaden discussion of what went wrong with IOM to all PWME groups so that, when PWME fly the only flag we have, as with the Markey resolution, at least the flaws are well enough known that their details and worst damages will not survive the proof-reading.
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