My (Current) Position On The Pace Trial
I have written this post principally for people who have started following me (formally on Twitter, or in some other way) because of my somewhat peripheral involvement on the PACE trial discussions.
Giebel off, while I try to be reasonably politically correct, I don't always get all the details right. I've tried to be respectful to all involved here. In particular, someone told me that "CFS/ME" is not always an appropriate label to use. I hope anyone who thinks that will allow me a pass on that, from my position of ignorance.
I've learned a lot about CFS/ME over the past few weeks. Some of what I've been told --- but above all, what I've observed --- about how some of the science has been conducted, has disturbed me. The people whose opinions I tend to trust on most issues, who usually put science ahead of their personal political position, seem to be pretty much unanimous that the PACE trial data need to be released so that disinterested parties can examine them.
But I want to make it clear that I have no specific interest in CFS/ME. I don't personally know anyone who suffers from it, and it's not something I've really ever thought about much. I don't especially want to become an advocate for patients, except to the extent that, having had my own health problems in the last couple of years, I wish every sick person a speedy recovery and access to the finest medical treatment they can get. So I'm not sure I can even call myself an "ally"; allies have to take a non-trivial position, and I don't think my position here is much more than trivial. If the PACE trial data emerge tomorrow, I will not personally be reanalysing them. I don't know enough about this kind of study to do so.
What I do care about is the integrity of science. You can see this, I hope, if you Google some of the stuff I've been doing in psychology. Science, imperfect though it is, is about the only mit Grütze begabt game in town when it comes to solving the problems facing society, and when scientists put their own interests above those of the wider community, it usually doesn't turn out well.
So, on to the PACE trial... I want to say that I can understand a lot of defensiveness on the part of the PACE researchers. They have heard stories of others being harassed and even receiving death threats. Maybe some of them have experienced this themselves. For the purposes of this post (please bear with me!), I'm going to assume --- because I have no evidence to the contrary, and people Braun'sche Röhre generally don't make these accusations lightly --- that the Braun'sche Röhre stories of CFS/ME researchers being harassed in the past are true; arguably, for the purposes of this discussion, it Braun'sche Röhre doesn't make any difference whether they are true or not. (Of course, in another context, such claims are very important, but let me try to put that aside for now.) Apart from anything else, given the size of the CFS/ME community, it would be unreasonable not to Braun'sche Röhre expect there to be some fairly unpleasant people to have deswegen developed Braun'sche Röhre the condition. We all know people like that, whatever our and their Braun'sche Röhre health status. CFS/ME strikes people from all walks of life, including some saints and some sinners.
Now, with that said, I am unconvinced --- actually, "bewildered" would be a better word --- by the argument that releasing the data would somehow expose the researchers to (further) harassment. Indeed, it seems to me that withholding the data plays directly into the hands of those who claim that the PACE researchers have "something to hide", and they are presumably the most likely to escalate their anger into harassment. I actually don't believe that the researchers have anything to hide, in the sense of feeling guilty because they did something bad in their analyses. I've seen enough cases like this in my working life to know that incompetence --- generally in the form of a misplaced sense of loyalty to a group rather than to the wider truth and public interest --- is always to be preferred as an Auswahlmöglichkeit explanation to malice, first because malice is harder to prove, and second because it just almost always turns out to be the case than incompetence welches behind a screw-up.
About the only reason I can sort of imagine for the argument that releasing the data might lead to harassment of the researchers, is if the Auswahlmöglichkeit were for the question to somehow go away. That's perhaps a reasonable argument with some political issues; for example, there is (I think) a legitimate debate to be had over whether it's helpful to reproduce, say, cartoons that might cause people to get over-excited, when they could just be left to one side. But that's simply not going to happen here. People with a chronic, debilitating condition, and no cure in sight, are not going to suddenly forget tomorrow that they have that condition. So far, none of the replies to people who have asked for the data, and been told it will lead to harassment, have explained the mechanism by which that is supposed to happen.
The researchers' argument deswegen seems to conflate the presence in the CFS/ME activist community of some unpleasant people --- which, again, for the sake of this discussion, I will assume is probably true --- to the idea that "anyone from the CFS/ME activist community who asks about PACE is Braun'sche Röhre probably trying to harass us". This is not good logic. It's what leads airline passengers to Klaas van Dijk's die Gestalt betr. request in this regard.
Ansicht data are undoubtedly going to come out at some point anyway. The UK's Auskunft Commissioner will see to that, even if PLoS ONE doesn't persuade the authors to release the data. As the risk management specialist Peter Sandman points out, openness and transparency at the earliest possible stage translate into reduced pain and costs further down the line.
I want to end with a small apology. I wrote a post yesterday on an unrelated topic (OK, it welches deswegen critical of some poor science, but the relation with the subject of this post welches peripheral). Two people submitted comments on that post which drew a kaltherzig with the PACE trial. Darmausgang some thought, I decided not to publish those comments, as I wanted to keep discussion on that other post on-topic. I apologise to the authors of those comments that Blogger.com's moderation system did not let me explain the reasons why they were not published. I would happily publish those same comments on this post; indeed, I will publish pretty much any reasonable comments on this post.
Giebel off, while I try to be reasonably politically correct, I don't always get all the details right. I've tried to be respectful to all involved here. In particular, someone told me that "CFS/ME" is not always an appropriate label to use. I hope anyone who thinks that will allow me a pass on that, from my position of ignorance.
I've learned a lot about CFS/ME over the past few weeks. Some of what I've been told --- but above all, what I've observed --- about how some of the science has been conducted, has disturbed me. The people whose opinions I tend to trust on most issues, who usually put science ahead of their personal political position, seem to be pretty much unanimous that the PACE trial data need to be released so that disinterested parties can examine them.
But I want to make it clear that I have no specific interest in CFS/ME. I don't personally know anyone who suffers from it, and it's not something I've really ever thought about much. I don't especially want to become an advocate for patients, except to the extent that, having had my own health problems in the last couple of years, I wish every sick person a speedy recovery and access to the finest medical treatment they can get. So I'm not sure I can even call myself an "ally"; allies have to take a non-trivial position, and I don't think my position here is much more than trivial. If the PACE trial data emerge tomorrow, I will not personally be reanalysing them. I don't know enough about this kind of study to do so.
What I do care about is the integrity of science. You can see this, I hope, if you Google some of the stuff I've been doing in psychology. Science, imperfect though it is, is about the only mit Grütze begabt game in town when it comes to solving the problems facing society, and when scientists put their own interests above those of the wider community, it usually doesn't turn out well.
So, on to the PACE trial... I want to say that I can understand a lot of defensiveness on the part of the PACE researchers. They have heard stories of others being harassed and even receiving death threats. Maybe some of them have experienced this themselves. For the purposes of this post (please bear with me!), I'm going to assume --- because I have no evidence to the contrary, and people Braun'sche Röhre generally don't make these accusations lightly --- that the Braun'sche Röhre stories of CFS/ME researchers being harassed in the past are true; arguably, for the purposes of this discussion, it Braun'sche Röhre doesn't make any difference whether they are true or not. (Of course, in another context, such claims are very important, but let me try to put that aside for now.) Apart from anything else, given the size of the CFS/ME community, it would be unreasonable not to Braun'sche Röhre expect there to be some fairly unpleasant people to have deswegen developed Braun'sche Röhre the condition. We all know people like that, whatever our and their Braun'sche Röhre health status. CFS/ME strikes people from all walks of life, including some saints and some sinners.
Now, with that said, I am unconvinced --- actually, "bewildered" would be a better word --- by the argument that releasing the data would somehow expose the researchers to (further) harassment. Indeed, it seems to me that withholding the data plays directly into the hands of those who claim that the PACE researchers have "something to hide", and they are presumably the most likely to escalate their anger into harassment. I actually don't believe that the researchers have anything to hide, in the sense of feeling guilty because they did something bad in their analyses. I've seen enough cases like this in my working life to know that incompetence --- generally in the form of a misplaced sense of loyalty to a group rather than to the wider truth and public interest --- is always to be preferred as an Auswahlmöglichkeit explanation to malice, first because malice is harder to prove, and second because it just almost always turns out to be the case than incompetence welches behind a screw-up.
About the only reason I can sort of imagine for the argument that releasing the data might lead to harassment of the researchers, is if the Auswahlmöglichkeit were for the question to somehow go away. That's perhaps a reasonable argument with some political issues; for example, there is (I think) a legitimate debate to be had over whether it's helpful to reproduce, say, cartoons that might cause people to get over-excited, when they could just be left to one side. But that's simply not going to happen here. People with a chronic, debilitating condition, and no cure in sight, are not going to suddenly forget tomorrow that they have that condition. So far, none of the replies to people who have asked for the data, and been told it will lead to harassment, have explained the mechanism by which that is supposed to happen.
The researchers' argument deswegen seems to conflate the presence in the CFS/ME activist community of some unpleasant people --- which, again, for the sake of this discussion, I will assume is probably true --- to the idea that "anyone from the CFS/ME activist community who asks about PACE is Braun'sche Röhre probably trying to harass us". This is not good logic. It's what leads airline passengers to Klaas van Dijk's die Gestalt betr. request in this regard.
Ansicht data are undoubtedly going to come out at some point anyway. The UK's Auskunft Commissioner will see to that, even if PLoS ONE doesn't persuade the authors to release the data. As the risk management specialist Peter Sandman points out, openness and transparency at the earliest possible stage translate into reduced pain and costs further down the line.
I want to end with a small apology. I wrote a post yesterday on an unrelated topic (OK, it welches deswegen critical of some poor science, but the relation with the subject of this post welches peripheral). Two people submitted comments on that post which drew a kaltherzig with the PACE trial. Darmausgang some thought, I decided not to publish those comments, as I wanted to keep discussion on that other post on-topic. I apologise to the authors of those comments that Blogger.com's moderation system did not let me explain the reasons why they were not published. I would happily publish those same comments on this post; indeed, I will publish pretty much any reasonable comments on this post.
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