Simon
Senior Member
- Messages
- 3,789
- Location
- Monmouth, UK
A brilliant blog from Nick Brown about the PACE trial: as he said, he has no special interest in mecfs or PACE, but is big on Good Science.
You may have heard of Nick Brown last year due to this work that made headlines worldwide:
The British amateur who debunked the mathematics of happiness | Science | The Guardian
Brown says he's working on the basis that the claims of harassment are not going to go away.
He says the argument against PACE will go on otherwise, because people who are chornically ill will go on being chronically ill and concerns over research on their illness will continue. Transparency throught data release could help move things on.
For me, this is the heart of the piece, that tackles the harassment meme head on
Another gem, disagreeing with the idea that you shouldn't release data to people because they are a bit stroppy (he discloses that Jim Coyne is his PhD supervisor, and "can be a bit shouty at times. But this is not kindergarten".
Re King's argument that only a health economist would be competent to handle the data, he says
Finally, Nick Brown echoes calls for the authors to release the data (as they promised to do when they submitted the article), or have the paper retracted.
You may have heard of Nick Brown last year due to this work that made headlines worldwide:
The British amateur who debunked the mathematics of happiness | Science | The Guardian
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... 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.
Brown says he's working on the basis that the claims of harassment are not going to go away.
Apart from anything else, given the size of the CFS/ME community, it would be unreasonable not to expect there to be some fairly unpleasant people to have also developed the condition. We all know people like that, whatever our and their 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.
He says the argument against PACE will go on otherwise, because people who are chornically ill will go on being chronically ill and concerns over research on their illness will continue. Transparency throught data release could help move things on.
For me, this is the heart of the piece, that tackles the harassment meme head on
The researchers' argument also 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 probably trying to harass us". This is not good logic. It's what leads airline passengers to demand that Muslim passengers be thrown off their plane. It's called the base rate fallacy, and avoiding it is supposed to be what scientists... are good at.
Another gem, disagreeing with the idea that you shouldn't release data to people because they are a bit stroppy (he discloses that Jim Coyne is his PhD supervisor, and "can be a bit shouty at times. But this is not kindergarten".
Scientists don't get to withhold data from other scientists just because they don't play nice. Ask any scientist if science is about robust disagreement and you will get a "Yes", but if that idealism isn't maintained when actual robust disagreement takes place, then we might as well conduct the whole process through everything-is-fine press releases.)
Re King's argument that only a health economist would be competent to handle the data, he says
the idea that it will take a year, or indeed need specialised training in health economics, to determine whether the Fisher's exact tests from the contingency tables were calculated correctly, or whether the results really show that people got better over the course of the study, is absurd
...Of course there will be questions of interpretation, over things like what "getting better" means, but nobody should have to accept the researcher's claims that their interpretation is the right one. There needs to be a debate, so that a consensus, if one is possible, can emerge.
Finally, Nick Brown echoes calls for the authors to release the data (as they promised to do when they submitted the article), or have the paper retracted.
You can't have the cake of "we're transparent, we published in an open access journal" and then eat that cake too with "but you can't see the data". PLoS ONE must insist that the authors release the data as they agreed to do as a condition of publication, or else retract the article because their conditions of publication have been breached. See Klaas van Dijk's formal request in this regard.
I've probably quoted more than is fair (will check with the author) - and please do read his blog.
Last edited: