Comet
I'm Not Imaginary
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"Rehmeyer makes statisticians’ 'jaws drop' over PACE"
- Thread starter Dolphin
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alex3619
Senior Member
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- Logan, Queensland, Australia
Yes, and no. It depends what you mean. They can look at what is published. That is enough, by itself, to invalidate the study. Like not meeting the requirements for calculation of SD, and if they pay attention doing the SD from the wrong population data. This is already known though, so not sure if its publishable. Until we have full data release a full reanalysis is impossible.Can they do this with the data that is available at the moment?!
However it would be cool if we had more people complaining about this study.
We do not even know if one single person recovered in the trial, as the data is not sufficient to determine that. We do know their recovery threshold is ludicrous, as in first year science or statistic students could see the problem. Such a basic issue, and too often doctors just accept this, this is an attack on the credibility of the entire medical profession. How can so many be so blind? (Rhetorical question, I have analyzed some of this, as have others, elsewhere.)
Something that should always be kept in mind, a statistically significant result is necessary but not sufficient to demonstrate something is important. Highly biased outcomes, or outright fraud or data manipulation, can result in significant results. The analysis has to go deeper than that.
Q: Give me an example of a statistically significant result due to bias.
A: The PACE trial's claim to improvement, normal or recovery.
adreno
PR activist
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Even better if more scientists starts asking for the data to be released.Can they do this with the data that is available at the moment?!
I wonder if anyone had any contacts at Radio 4 - More or less, the statistics programme might be interested in doing a piece about it.
http://www.bbc.co.uk/programmes/b006qshd
http://www.bbc.co.uk/programmes/b006qshd
JaimeS
Senior Member
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- 3,408
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- Silicon Valley, CA
@justy -- that's a great idea!
Does anyone have a link to the conference in Chicago details? I could put an email together to send them, but dint really have enough of the relevant info or enough knowledge about the PACE trial to say much about it.
Who could help me with this?
Who could help me with this?
You could also send them this
http://www.stats.org/pace-research-sparked-patient-rebellion-challenged-medicine/
Now Comet, don't be vexatious!Can they do this with the data that is available at the moment?!
Comet
I'm Not Imaginary
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- 694
But I like using the Jaw Drop and Woot smilies together - especially in this context!Now Comet, don't be vexatious!
dreampop
Senior Member
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- 296
I think the take away from pace, regardless of the results, is that its a cardinal sin to bias your study in favor of the expected result - and its clear they did this. And the most shocking example of this, is they made up success stories and provided them to the subjects in pamphlet form. This presentation is light on stats for this group, but that concept is the one they would take away.
alex3619
Senior Member
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- Logan, Queensland, Australia
What is to be done when an entire field within psychiatry thinks such research is business as usual? Psychiatry might come out of this with a much worse reputation.
What is to be done when most of the medical profession thinks this is OK? Medicine is in the process of discrediting itself, yet again.
Some doctors and psychiatrists see the issues, but until very recently most have been far too quiet. That is now changing.
Medical authorities have the opportunity to take the lead here and salvage the profession's reputation. Will they? Or wont they?
JaimeS
Senior Member
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The impression I get is that they think this will simply go away if they ignore it long enough. Whelp, it's been years, now. The problems seem acres deep. Just when you think you've found every error, there are more.
The impression I want to give scientists is that this could not just happen to anyone who gets their data analyzed / publicized. The public might discover an error, but the sheer number of errors here -- and the sheer deliberate misconduct -- is dizzying. I'll never forget that Tuller talked about its issues for an hour non-stop and wasn't even able to finish describing them all.
-J
The impression I want to give scientists is that this could not just happen to anyone who gets their data analyzed / publicized. The public might discover an error, but the sheer number of errors here -- and the sheer deliberate misconduct -- is dizzying. I'll never forget that Tuller talked about its issues for an hour non-stop and wasn't even able to finish describing them all.
-J
frog_in_the_fog
Test Subject
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- California
Massive royal egos and reputations are at stake, so they are not going to back down. How do you peer review those making the decisions at the very top? That it is far cheaper to sweep things under the rug is the only real conclusion we can reach here. The costs to those afflicted on the other hand continue to rise...
JaimeS
Senior Member
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- Silicon Valley, CA
Part of the issue is that there's no way for them to 'win' by engaging. The evidence is too damning. So they'll stay quiet as long as humanly possible. There's no win-win scenario for the PACE trial and patients, because there's no way to step back and say that they made a mistake at this point, no harm, no foul.
It's actually remarkable they moved on with MAGENTA despite PACE having all these methodological flaws and ethical problems. Reminds me of the archetypal Fool card:
Blithely about to walk off that cliff.
For a second time. No sharp rocks at the bottom this time, folks.
-J
It's actually remarkable they moved on with MAGENTA despite PACE having all these methodological flaws and ethical problems. Reminds me of the archetypal Fool card:
Blithely about to walk off that cliff.
For a second time. No sharp rocks at the bottom this time, folks.
-J
dreampop
Senior Member
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- 296
Your know the situation - If we have a psychosomatic illness because a physical illness cannot be objectively shown, how is a psychosomatic illness any more valid since it cannot be objectively shown?
Doctors are simply afraid to take the side of the perceived psychosomatic illness and a psychosomatic illness can't be disproved until you can show one of the symptoms has a biologic origin. They dismiss any other direct biologic findings as a result of neuro immune changes derived from irrational thoughts/beliefs. Until we find a smoking gun, things won't change for CFS, abnormalities are not enough, including changes in gut flora.
I'm surprised you discount all psychogenic illnesses - these do exist in delusional disorders (psychotic) and seem to exist in non psychotic disorders from an unknown etiology (conversion, irrationality, etc) - i.e. non epileptic seizures. I reject flawed psychogenic models and studies, but I have an impossible time believing no somatic diseases actually exist.
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dreampop
Senior Member
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I'm also not personally put off that the idea that CFS is psychological - more that, as you said, the argument for that is as weak as the biological arguments they criticize and that their are no effective treatments, CBT is modest for FMD, for it anyway implying psychologists don't really understand how it works.
alex3619
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There is a difference between brain derived symptoms and mind derived disorders or diseases.
I have no issues with research into psychogenic illnesses, in principle. Yet, in the history of medicine, not one has been proved. None should be taken seriously, as the evidence is much much worse than for CFS, and is right up there with tubercular personality, personality created heart disease, or women getting breast cancer because, well, they're women.
Non epileptic seizures have been presumed to be psychogenic.
Irrationality ... its a human trait, not a disorder. Most of us can learn to be rational, but lack training. Just as we can learn mathematics or many other things.
Somatic diseases are bodily diseases, like HIV/AIDS, cancer or a heart attack.
Psychosomatic disease was originally, prior to Freud, considered to be the study of how the mind and disease interact. At the time it was a valid research area. Its questionable that mind is still a valid medical concept though.
With one caveat I mention from time to time, and there are caveats on that caveat, there is no proof that even one mental disorder exists. We do know that brain disorders exist. We do know that informational "disorders" exist, as in cult brainwashing. But what about supporting your local football team, being a patriot, or voting for one party all the time, or belonging to one religion, and here I include athiesm? These are cultural and social things, and its not a great idea to medicalize them. The Soviet Union did that with people who disagreed with its politics.
Further, it has been recognized (widely in fact, and I think there is a disclaimer inside the DSM itself) that not one single disorder category in the DSM is really validated. Even depression. We know something is wrong, lots of evidence of that, but not what is wrong nor if there is a valid discrete category.
Now I do think that some categories in the DSM will prove to be valid, but will that be 1%, 10%, 90% or 99%? Depression, for example, is a range of similar symptoms that seem to apply to many diseases and injuries. The symptom is real, but we are kidding ourselves that there is a discrete diagnostic category with good validity, representing a disorder or disease. If follows from there that the research to find a cure hinges on finding mechanisms. It also will not be one cure, but a range. So far we have none. Hence depression is just a symptom, or range of symptoms, and its a category mistake to call it a disorder or other disease entity. We treat it palliatively. It often resolves on its own. Its a lot like the Oxford Definition of CFS, a hodgepodge of different things brought in under an umbrella label.
I should add that there is strong and growing evidence that schizophrenia and Alheimers are in the process of validation. They are however brain disorders, involving the immune system and metabolism respectively, though with many other complicated processes still being researched. I think it likely most mental disorders will be renamed as brain disorders in time.
Now brain disorders can induce disordered cognition and emotion. Just look at brain injury for example.
Emotional events can also trigger changes in behaviours. Its the mechanisms that are under question.
Until we have evidence that a psychogenic disorder actually exists, and I mean tangible experimental evidence, thoroughly tested and not just supported by poor quality research designed to amass evidence of what might be, we should regard it like the Yeti, or aliens buzzing the White House in flying saucers, or magic, or demonic possession.
Psychogenic disorders, as a diagnostic label, exist because some people thought they existed, it was a convenient label, and definitions were written up in the DSM, which was then marketed. The science behind these is very very limited, and there is nothing definitive at all.
Psychogenic disorders might exist, as a research possibility, and people who are diagnosed with these things deserve treatment. However they deserve appropriate treatment, with awareness the diagnostic categories are unstable, and that the claims to causal mechanism are based on theory.
People with "mental" disorders deserve better. Much better. They deserve cures, not palliative treatments.
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alex3619
Senior Member
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There is no question that psychological symptoms exist in CFS. None. That is not where the problems lie.
Many CBT research adherents, as demonstrated in CFS, schizophrenia, and asthma research, frequently use research methodologies that are likely, even when there is no improvement, to show improvement. That is, statistically significant improvement, yet the objective evidence consistently shows they are wrong. I have not recently read much on FMDs, but I suspect it has the same issues.
Its also impossible for these studies to be "gold" standard. They cannot be double blinded. The diagnostic categories are unstable. They might be able to validly write about quality of life improvement, but they consistently fail on measure of objective improvement so far as I am aware. I have, in a blog, discussed the Lead standard instead, with their methodologies as modern alchemy.
"Evidence based" reviews and meta-analyses that use tick box approaches, and do not question underlying methodology are at risk they just produce "evidence" based reviews on bias. Given the constraints on funding, timing, and expertise in such reviews there is wide room for problems to arise.
Psychiatry, medicine and other disciplines can do better. Much better. They just, generally, don't.