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Just be aware that the author of this article is a writer who is basically "out to get" the PACE trial, and she has some slightly strange ideas about CFS (http:

Just be aware that the author of this article is a writer who is basically "out to get" the PACE trial, and she has some slightly strange ideas about CFS (http://www.healthrising.org/blog/2014/05/02/constant-vigilance-julie-rehmeyers-mecfs-recovery-story/ http://www.healthrising.org/blog/2014/05/02/constant-vigilan...). From what I can see from the reanalysis released by QMUL (http://www.wolfson.qmul.ac.uk/images/pdfs/pace/PACE_bimodal_CFQ_analysis_final_8_Sept_2016.pdf http://www.wolfson.qmul.ac.uk/images/pdfs/pace/PACE_bimodal_... and http://www.wolfson.qmul.ac.uk/images/pdfs/pace/PACE_published_protocol_based_analysis_final_8th_Sept_2016.pdf http://www.wolfson.qmul.ac.uk/images/pdfs/pace/PACE_publishe...), the main difference from the original trial was the "recovery" measure, which is a pretty arbitrary value anyway (as recovery can mean various things). However the average fatigue scores don't seem to be much changed from the original trial as far as I can see, and that is the more important result. A lot of people are out to kill PACE, but releasing lots of frothy press releases with the worst possible interpretation isn't terribly useful for anyone.

sirmarglar 10y ago
First, the article in STAT is not a press release...it's a reported commentary/opinion piece where the author has clearly done a lot of reporting. Second, setting a functional level on measure you're talking about is arbitrary. But the the PACE authors picked a very lo value for "recovery." And they dropped that level after beginning the trial - a very poor practice known as outcome switching. At the end, they defined "recovery" below the physical functioning level for most heart failure patients - and below their entry criteria. That is, a CFS patient could enter the trial, get worse, and get called recovered - all while functioning worse than a heart failure patient. Pretty shady stuff.
- cpncrunch 10y ago
  >Second, setting a functional level on measure you're talking about is arbitrary Yes, and the PACE recovery paper does say this. >But the the PACE authors picked a very lo value for "recovery." How exactly is 1sd below the mean of the general population "lo"? >At the end, they defined "recovery" below the physical functioning level for most heart failure patients Again, it's 1sd below the mean of the general population. Congestive heart failure has a mean value of physical functioning around 1sd below the mean for the general population. The person who first threw out this "congestive heart failure" meme probably didn't understand statistics. >That is, a CFS patient could enter the trial, get worse, and get called recovered The point is that the entry criteria was an upper limit and the recovery criteria was a lower limit, so it makes sense that they're different. I don't think you can have patients who didn't improve being classed as "recovered" as recovery also included various other measures (e.g. not meeting Oxford criteria). The main point of the study was to show the differences in recovery between the treatment groups. The other point is that the recovery results weren't even in the PACE trial, they was in a second paper. The paper does mention that there is no agreed definition of recovery, and they were just trying to get a handle on it using various measures. Overall, apart from the recovery results (which are somewhat arbitrary) the PACE trial results are in line with all the other CBT trials. There are certainly problems with the PACE trial (the main one being that CBT and GET are based on dubious etiologies), so I think CFS advocates would be better off actually delving into the real problems with the treatments, rather than putting up these strawmen.
dreamcompiler 10y ago
The author is a friend of mine and if she's been "out to get" the PACE study it's because it exemplifies bad science by drawing conclusions not supported by evidence and by changing its metric criteria midstream. It's true that it also didn't confirm the author's own experience, but had its conclusions been scientifically sound I'm sure she would have embraced them. Julie Rehmeyer has a long reputation as an objective science writer.
- cpncrunch 10y ago
  Yes, she does generally seem to be an objective science writer, but I think with CFS she has let her objectivity go by the wayside. The science of PACE isn't quite as bad as the haters are making out. In fact some of them are guilty of pretty shocking misunderstandings of basic statistics. See my reply to sirmarglar.

sirmarglar 10y ago

First, the article in STAT is not a press release...it's a reported commentary/opinion piece where the author has clearly done a lot of reporting. Second, setting a functional level on measure you're talking about is arbitrary. But the the PACE authors picked a very lo value for "recovery." And they dropped that level after beginning the trial - a very poor practice known as outcome switching. At the end, they defined "recovery" below the physical functioning level for most heart failure patients - and below their entry criteria. That is, a CFS patient could enter the trial, get worse, and get called recovered - all while functioning worse than a heart failure patient. Pretty shady stuff.

cpncrunch 10y ago
>Second, setting a functional level on measure you're talking about is arbitrary Yes, and the PACE recovery paper does say this. >But the the PACE authors picked a very lo value for "recovery." How exactly is 1sd below the mean of the general population "lo"? >At the end, they defined "recovery" below the physical functioning level for most heart failure patients Again, it's 1sd below the mean of the general population. Congestive heart failure has a mean value of physical functioning around 1sd below the mean for the general population. The person who first threw out this "congestive heart failure" meme probably didn't understand statistics. >That is, a CFS patient could enter the trial, get worse, and get called recovered The point is that the entry criteria was an upper limit and the recovery criteria was a lower limit, so it makes sense that they're different. I don't think you can have patients who didn't improve being classed as "recovered" as recovery also included various other measures (e.g. not meeting Oxford criteria). The main point of the study was to show the differences in recovery between the treatment groups. The other point is that the recovery results weren't even in the PACE trial, they was in a second paper. The paper does mention that there is no agreed definition of recovery, and they were just trying to get a handle on it using various measures. Overall, apart from the recovery results (which are somewhat arbitrary) the PACE trial results are in line with all the other CBT trials. There are certainly problems with the PACE trial (the main one being that CBT and GET are based on dubious etiologies), so I think CFS advocates would be better off actually delving into the real problems with the treatments, rather than putting up these strawmen.

dreamcompiler 10y ago

The author is a friend of mine and if she's been "out to get" the PACE study it's because it exemplifies bad science by drawing conclusions not supported by evidence and by changing its metric criteria midstream. It's true that it also didn't confirm the author's own experience, but had its conclusions been scientifically sound I'm sure she would have embraced them. Julie Rehmeyer has a long reputation as an objective science writer.

cpncrunch 10y ago
Yes, she does generally seem to be an objective science writer, but I think with CFS she has let her objectivity go by the wayside. The science of PACE isn't quite as bad as the haters are making out. In fact some of them are guilty of pretty shocking misunderstandings of basic statistics. See my reply to sirmarglar.