Establishing research cohorts of 'Canadian' criteria patients.
This is a new thread, arising from the XMRV CFS UK study #II thread:
http://forums.aboutmecfs.org/showthread.php?3133-XMRV-CFS-UK-study-II/page55
The 'Canadian' Criteria have been with us since 2003, they have been subject to some validation as an effective means of establishing severely impaired 'ME/CFS' sufferers by Leonard Jason et al (2005) and, crucially, have been subject to the most studious of neglect and ignoring, in most subsequent research papers on 'CFS'.
Recently, Lombardi et al's use of the Canadian criteria to select a research patient cohort, and the failure of, specifically, Erlwein et al to reproduce this cohort (but also, I argue , the Kerr team's apparent failure to do same) has highlighted both the failure of scientists to establish a severely impaired research cohort, and the inappropriate extrapolation of results from research cohorts, for which organic dysfunction has been weeded out, to severely impaired patients with signs and symptoms of organic illness (no matter how difficult to 'explain' fully). I think therefore the issue has become extremely timely.
There is a dissonance between what many in the community understand about patient cohorts, and the apparent lack of this by some of the 'scientists'. This is not meant to be inflammatory, but I do think we need to stop excusing scientists for not establishing more 'Canadian' cohorts in ME/CFS research, or at least acknowledging, in the sections of their papers detailing 'limitations of study', the discrepancies between those cohorts like the 'empirical' CDC and Wessley/White Oxford/minimal Fukuda criteria cohorts, and people who should be included in a Canadian defined research cohort, perhaps (I'd say definitely) with the additional abnormal physiological responses detailed in the Lombardi paper.
I have been involved since about 2004 in highlighting the failure of the 'PACE' trial in particular to establish a cohort of patients based on the Canadian guidelines, as well as other scientist's failures to acknowledge the problems of conflicting patient cohorts in their published papers (for example under a section detailing 'limitations of the study') since 2003. I will put up various links and copies of correspondence etc detailing this.
Failure to establish a research cohort of 'Canadian' patients in the UK means there will never be an adequate replication study in the UK. In addition, it has allowed certain unsubtantiated but common claims to be made (e.g. the recent BMJ editorial by Sandthouse et al) that people as ill as, for example, Lynne Gilderdale, are somehow 'rare' and that 'CFS' is treatable by CBT/GET.
I would like this thread to include links to any deliberations on the Canadian Criteria as a research tool, including those arguing against it. In light of some doubt being cast upon the research cohort in the Lombardi et al paper, I am hoping to get that issue clarified as well.
Any evidence people have around the use or non use of Canadian criteria in research settings would be greatly appreciated, as well as deliberations and opinions on the issue.
Best wishes
Angela Kennedy
This is a new thread, arising from the XMRV CFS UK study #II thread:
http://forums.aboutmecfs.org/showthread.php?3133-XMRV-CFS-UK-study-II/page55
The 'Canadian' Criteria have been with us since 2003, they have been subject to some validation as an effective means of establishing severely impaired 'ME/CFS' sufferers by Leonard Jason et al (2005) and, crucially, have been subject to the most studious of neglect and ignoring, in most subsequent research papers on 'CFS'.
Recently, Lombardi et al's use of the Canadian criteria to select a research patient cohort, and the failure of, specifically, Erlwein et al to reproduce this cohort (but also, I argue , the Kerr team's apparent failure to do same) has highlighted both the failure of scientists to establish a severely impaired research cohort, and the inappropriate extrapolation of results from research cohorts, for which organic dysfunction has been weeded out, to severely impaired patients with signs and symptoms of organic illness (no matter how difficult to 'explain' fully). I think therefore the issue has become extremely timely.
There is a dissonance between what many in the community understand about patient cohorts, and the apparent lack of this by some of the 'scientists'. This is not meant to be inflammatory, but I do think we need to stop excusing scientists for not establishing more 'Canadian' cohorts in ME/CFS research, or at least acknowledging, in the sections of their papers detailing 'limitations of study', the discrepancies between those cohorts like the 'empirical' CDC and Wessley/White Oxford/minimal Fukuda criteria cohorts, and people who should be included in a Canadian defined research cohort, perhaps (I'd say definitely) with the additional abnormal physiological responses detailed in the Lombardi paper.
I have been involved since about 2004 in highlighting the failure of the 'PACE' trial in particular to establish a cohort of patients based on the Canadian guidelines, as well as other scientist's failures to acknowledge the problems of conflicting patient cohorts in their published papers (for example under a section detailing 'limitations of the study') since 2003. I will put up various links and copies of correspondence etc detailing this.
Failure to establish a research cohort of 'Canadian' patients in the UK means there will never be an adequate replication study in the UK. In addition, it has allowed certain unsubtantiated but common claims to be made (e.g. the recent BMJ editorial by Sandthouse et al) that people as ill as, for example, Lynne Gilderdale, are somehow 'rare' and that 'CFS' is treatable by CBT/GET.
I would like this thread to include links to any deliberations on the Canadian Criteria as a research tool, including those arguing against it. In light of some doubt being cast upon the research cohort in the Lombardi et al paper, I am hoping to get that issue clarified as well.
Any evidence people have around the use or non use of Canadian criteria in research settings would be greatly appreciated, as well as deliberations and opinions on the issue.
Best wishes
Angela Kennedy