me/cfs 27931
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In the United States, although my doctor said he'd prefer a diagnosis of ME, my HMO has no code for ME. He apologized to me and said his only option was to diagnose me with CFS.
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Tuller and Rehmeyer Trial By Error, Continued: Did PACE Really Prove that GET is safe
- Thread starter Cheshire
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worldbackwards
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Wasn't White' s point back in 2008 that ME may once have existed but it doesn't anymore and that everything now is CFS? Haven't watched the video but I remember a report of the talk. I also remember a correspondence afterwards in the MEA magazine where he held up the fact he'd talked about ME as a 'real' disease as a badge of honour, all whilst he was saying it was now irrelevant.
I'm far from a fan of the PACE Trial, but they did make some sort of effort to look of adverse events even if the approach was problematic. Previously adverse events were pretty much ignored and basically GET and CBT was said to be safe because on average there were improvements. As anciendaze has pointed out, a lot of information is not given with means: just because a mean improves doesn't mean that nobody's score deteriorated.
anciendaze
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I'm sorry if I gave the impression PACE researchers did nothing to address the issue of possible harms. They did talk about the subject.
However, when I get through reading what they wrote on the subject, I'm at a loss to understand any meaning beyond assurances and assertions that either there were no harms or these were not caused by therapy.
If my own condition is not deteriorating it is possible the PACE papers serve as vectors carrying brain fog.
However, when I get through reading what they wrote on the subject, I'm at a loss to understand any meaning beyond assurances and assertions that either there were no harms or these were not caused by therapy.
If my own condition is not deteriorating it is possible the PACE papers serve as vectors carrying brain fog.
anciendaze
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@Dolphin
Not meant to be personal criticism. I'm quite aware that my thinking is not always what it should be.
Perhaps you can help me catch errors before I go further in making a fool of myself. Please correct any errors below. Here's the impression I get when I sit back from reading the PACE documents:
I am not sure how many patients improved, and what is considered a clinically significant benefit.
I am not sure how many patients declined, and what is considered a clinically significant harm.
I am not sure how the rate of hospitalizations compares to anything else, and I certainly don't know what caused them.
If the distributions in various arms of the study were normal, as commonly assumed, I could deduce a good bit from the two parameters published. If, as seems almost certain, they are not, then I have considerable doubt about the effect of outliers.
Were the modest objective improvements the result of a few positive outliers which had disproportionate effect? Could these be patients who should have had different diagnoses?
Were there any negative outliers at all? If so, were these examples of harm, or at least potential for harm?
What would it take for the authors to declare that a patient was harmed?
If you can't answer such questions after reading a scientific document claiming objective results, either the research is badly flawed or the write-up is absolutely atrocious.
Not meant to be personal criticism. I'm quite aware that my thinking is not always what it should be.
Perhaps you can help me catch errors before I go further in making a fool of myself. Please correct any errors below. Here's the impression I get when I sit back from reading the PACE documents:
I am not sure how many patients improved, and what is considered a clinically significant benefit.
I am not sure how many patients declined, and what is considered a clinically significant harm.
I am not sure how the rate of hospitalizations compares to anything else, and I certainly don't know what caused them.
If the distributions in various arms of the study were normal, as commonly assumed, I could deduce a good bit from the two parameters published. If, as seems almost certain, they are not, then I have considerable doubt about the effect of outliers.
Were the modest objective improvements the result of a few positive outliers which had disproportionate effect? Could these be patients who should have had different diagnoses?
Were there any negative outliers at all? If so, were these examples of harm, or at least potential for harm?
What would it take for the authors to declare that a patient was harmed?
If you can't answer such questions after reading a scientific document claiming objective results, either the research is badly flawed or the write-up is absolutely atrocious.
anciendaze
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An example of how the PACE authors deal with both subjective and objective data occurred to me after I wrote the above. I think this illuminates the general problem.
There is detailed data on the doubly-subjective question of catastrophizing. This concerns the authors' opinions about the patients' concerns over problems that may result in significant harm. Extending these results to several decimal places strikes me as what a colleague describes as "measuring the diameter of a gnat's navel".
A related objective question should have been accessible to the authors, but not to anyone limited to published material. Consider the entire cohort of 640. Did these patients experience higher rates of verifiable accidents, health problems, legal actions, financial setbacks and personal losses than the general population? If so, there would be nothing irrational about concern for serious difficulties that they, though perhaps not the general population, would consider catastrophic. Millionaires can laugh about dropping thousands while gambling, paupers cannot.
A particular concern might explain much resistance to releasing any data. If any patient in the study was hospitalized because of attempted suicide that would be highly personal information the patient would not want disseminated. Indirect mentions of such problems do show up in studies on the effect of medications without identifying individuals.
Even without a deliberate suicide attempt there may be patients hospitalized for eating disorders, or falls, or traffic accidents, or a variety of other medical problems commonly reported in CFS cases. It seems clear the PACE authors would look at such situations and say "we did nothing to cause this, we were constantly advising the patient to get better." Faith healers use similar reasoning to explain failures.
If you remove objective data concerning the kinds of setbacks I'm describing, ignore evidence of declines and shout about insignificant improvements, you end up with evidence no better than testimonials. Testimonials tell you nothing about safety.
Beyond the question of safety of GET what data we have from PACE does not even show the background rate for such serious problems in their CFS cohort. This makes it impossible to say if such problems were more or less common in any arm of the study.
There is detailed data on the doubly-subjective question of catastrophizing. This concerns the authors' opinions about the patients' concerns over problems that may result in significant harm. Extending these results to several decimal places strikes me as what a colleague describes as "measuring the diameter of a gnat's navel".
A related objective question should have been accessible to the authors, but not to anyone limited to published material. Consider the entire cohort of 640. Did these patients experience higher rates of verifiable accidents, health problems, legal actions, financial setbacks and personal losses than the general population? If so, there would be nothing irrational about concern for serious difficulties that they, though perhaps not the general population, would consider catastrophic. Millionaires can laugh about dropping thousands while gambling, paupers cannot.
A particular concern might explain much resistance to releasing any data. If any patient in the study was hospitalized because of attempted suicide that would be highly personal information the patient would not want disseminated. Indirect mentions of such problems do show up in studies on the effect of medications without identifying individuals.
Even without a deliberate suicide attempt there may be patients hospitalized for eating disorders, or falls, or traffic accidents, or a variety of other medical problems commonly reported in CFS cases. It seems clear the PACE authors would look at such situations and say "we did nothing to cause this, we were constantly advising the patient to get better." Faith healers use similar reasoning to explain failures.
If you remove objective data concerning the kinds of setbacks I'm describing, ignore evidence of declines and shout about insignificant improvements, you end up with evidence no better than testimonials. Testimonials tell you nothing about safety.
Beyond the question of safety of GET what data we have from PACE does not even show the background rate for such serious problems in their CFS cohort. This makes it impossible to say if such problems were more or less common in any arm of the study.
That's the impression I got.
anciendaze
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I'll try to narrow the scope of inquiries here to something that I don't understand about PACE and harms. I am really at a loss to understand what I'm supposed to know after reading the documents except that authorities want to assure me that there were no significant harms from CBT or GET.
Here I'm concerned with serious adverse events which leave documentary evidence, regardless of cause. It does not matter if this evidence fits a space on a questionnaire. Hospitalizations, insurance claims and police reports are examples. I'll confess right away that I don't grasp how the PACE definitions correspond to events in the outside world.
My post about catastrophization raises one such question: did I miss evidence about the rate at which patients in the entire research cohort suffered serious adverse events, compared to the general population? This is a separate and distinct question from attribution of causes.
One aspect of such information is that it might explain patient concerns about catastrophic outcomes of common situations, which might be realistic. More to the immediate point, if you don't have that data you have no way to measure relative rates of serious adverse events in different arms of the study. After you have such data you can begin to worry about causes, but without it you are lost before you begin.
Did I miss something?
Added: Anyone who can fill me in on what PACE intended to accomplish in a real scientific sense, rather than a polemical one, but who is worried that they may be vilified for appearing to defend those authors can send me a PM, or even an email to anciendaze at gmail. I really want to know if there is anything more than an assertion behind those claims of safety.
Here I'm concerned with serious adverse events which leave documentary evidence, regardless of cause. It does not matter if this evidence fits a space on a questionnaire. Hospitalizations, insurance claims and police reports are examples. I'll confess right away that I don't grasp how the PACE definitions correspond to events in the outside world.
My post about catastrophization raises one such question: did I miss evidence about the rate at which patients in the entire research cohort suffered serious adverse events, compared to the general population? This is a separate and distinct question from attribution of causes.
One aspect of such information is that it might explain patient concerns about catastrophic outcomes of common situations, which might be realistic. More to the immediate point, if you don't have that data you have no way to measure relative rates of serious adverse events in different arms of the study. After you have such data you can begin to worry about causes, but without it you are lost before you begin.
Did I miss something?
Added: Anyone who can fill me in on what PACE intended to accomplish in a real scientific sense, rather than a polemical one, but who is worried that they may be vilified for appearing to defend those authors can send me a PM, or even an email to anciendaze at gmail. I really want to know if there is anything more than an assertion behind those claims of safety.
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anciendaze
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If nobody can point to another interpretation of PACE literature I'm going to fall back on this vernacular translation of the turgid prose in PACE claimed to show safety of GET:
"We looked at a bunch of reports of problems, and we decided we had not caused any significant problems."
"We looked at a bunch of reports of problems, and we decided we had not caused any significant problems."