Re: PACE trial authors’ reply to letter by Kindlon
I note Dr Luke's request that quacks be given their own space, mentioning: "homeopaths, ME specialists, Reiky pedlars, snake oil salesmen, ufo spotters and 'i know who killed Kennedy" posters, et al. This would allow a faster read of the science postings and an opportunity for the 'believers' to post their beliefs on faith sites and their science on the BMJ".
I am a ME specialist, i.e. I specialised in this illness for over 30 years. I helped draw up research criteria, I studied it and even wrote my PhD on it. To link me with snake oil salesman and UFO spotters and judge me on factors other than the quality of my work is inconsistent with science and should be discouraged.
Recent posts by patients or professionals without medical training may show a lack of knowledge regarding the design of trials but some make valid points in relation to the PACE trial. Even this uber orthodox scientist was surprised to see that one criterion for significant improvement was a score below that required for entry to the trial. Moreover, the means and SD made a few of my colleagues and I wonder if any of the participants recorded a score for physical functioning in the normal range at follow-up. So as a trained scientist, I'm hopeful that an independent review looking at the raw data will be able to assess how many had truly improved, i.e. recorded scores within the normal range for their age and no longer in receipt of sickness benefit.
Whatever one might feel about the quality of the PACE trial, let's not start using the modus operandi of the cyberbully and dismissing those with alternative views by getting peronal.
Rapid Response:
Re: PACE trial authors’ reply to letter by Kindlon
I note Dr Luke's request that quacks be given their own space, mentioning: "homeopaths, ME specialists, Reiky pedlars, snake oil salesmen, ufo spotters and 'i know who killed Kennedy" posters, et al. This would allow a faster read of the science postings and an opportunity for the 'believers' to post their beliefs on faith sites and their science on the BMJ".
I am a ME specialist, i.e. I specialised in this illness for over 30 years. I helped draw up research criteria, I studied it and even wrote my PhD on it. To link me with snake oil salesman and UFO spotters and judge me on factors other than the quality of my work is inconsistent with science and should be discouraged.
Recent posts by patients or professionals without medical training may show a lack of knowledge regarding the design of trials but some make valid points in relation to the PACE trial. Even this uber orthodox scientist was surprised to see that one criterion for significant improvement was a score below that required for entry to the trial. Moreover, the means and SD made a few of my colleagues and I wonder if any of the participants recorded a score for physical functioning in the normal range at follow-up. So as a trained scientist, I'm hopeful that an independent review looking at the raw data will be able to assess how many had truly improved, i.e. recorded scores within the normal range for their age and no longer in receipt of sickness benefit.
Whatever one might feel about the quality of the PACE trial, let's not start using the modus operandi of the cyberbully and dismissing those with alternative views by getting peronal.
E Goudsmit PhD FBPsS
Competing interests: No competing interests