4 Matching Annotations
  1. Jul 2018
    1. On 2017 Oct 06, Lily Chu commented:

      Thank you for the response, Dr. Loy. Many medical resources used by clinicians continue to conflate CFS with SEID and suggest that cognitive behavioral and/or graded exercise therapy are appropriate for patients who fit SEID criteria despite there being no trials of CBT and GET using SEID criteria. I was concerned your group's article might contribute to this confusion.

      (In fact, the US Centers for Disease Control and Prevention are working on removing CBT and GET as treatments from their ME/CFS website. See: http://www.npr.org/sections/health-shots/2017/10/02/554369327/for-people-with-chronic-fatigue-syndrome-more-exercise-isnt-better.)


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    2. On 2017 Sep 01, Bryan Loy commented:

      Thank you for commenting on our paper, and for your contributions to this field. We agree that the ME, CFS, and SEID case definitions are not the same, which is why we provided a citation of each major case-defining paper in the first sentence of our introduction. We then wrote in the “Data searches” section that we were looking for papers using any of the 3 major case definitions, and cited them again. We further acknowledge the differences in the “Diagnostic characteristics” section of the paper, where we coded studies based on the criteria used to diagnose the participants within each study that was included in the meta-analysis. As you point out in table 1, we only found studies that had used the CDC or Fukuda criteria. We wrote ME/CFS/SEID in the title, abstract, and paper to be consistent with the naming used in the IOM report “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness” and the first sentence in the report brief, “Between 836,000 and 2.5 million Americans suffer from myalgic encephalomyelitis/chronic fatigue syndrome-commonly referred to as ME/CFS” (https://www.nap.edu/resource/19012/MECFS_ReportBrief.pdf). While our conclusions may pertain only to people diagnosed using the CDC or Fukuda criteria, we wanted to still refer to the disease as ME/CFS/SEID since ME and SEID have been recommended as new names for CFS. We hope the results of this initial summary of the existing literature will encourage future research that includes other case definitions, and improves the lives of people living with the disease.


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    3. On 2017 Aug 24, Lily Chu commented:

      I am one of the co-authors for the SEID (Systemic Exertion Intolerance Disease) case definition. The SEID and ME case definitions are not the same as the CFS case definition. Otherwise we would not have different names for them. The authors of this study seem to think they are equivalent to each other. The title and abstract is misleading: they should be clear that ALL of the studies examined by the authors (in Table 1) used only the 1994 Fukuda CFS case definition. Consequently, any results and conclusions drawn are only about CFS.


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  2. Feb 2018
    1. On 2017 Aug 24, Lily Chu commented:

      I am one of the co-authors for the SEID (Systemic Exertion Intolerance Disease) case definition. The SEID and ME case definitions are not the same as the CFS case definition. Otherwise we would not have different names for them. The authors of this study seem to think they are equivalent to each other. The title and abstract is misleading: they should be clear that ALL of the studies examined by the authors (in Table 1) used only the 1994 Fukuda CFS case definition. Consequently, any results and conclusions drawn are only about CFS.


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