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Talk:PACE trial
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===[[Angela Kennedy]], sociologist and author=== Angela Kennedy has made specific critiques of PACE regarding the following areas: (ref: [http://pacedocuments.blogspot.co.uk/2016/02/summary-of-my-specific-concerns-about.html Summary of my specific concerns about PACE with annotated bibliography]) 1. Serious risks to clinical patient safety caused by unsound claims made about the efficacy of CBT and GET following the PACE trial; 2. Gross discrepancies between research and clinical cohorts, and how clinical patients (and the physiological dysfunction associated with them) appear to have been actively excluded from PACE and other research by the research group involved in PACE, which has, ironically, caused serious resulting risks to clinical patient safety in the UK in particular; 3. Related to the above, gross discrepancies in how various sets of patient criteria were used (and/or rejected), including but not limited to a changing of the London criteria by PACE authors from its original state, a set of criteria which was already controversial and problematic to start with for a number of reasons; 4. Failure of the PACE trial authors to acknowledge the range and depth of scientific literature documenting serious physiological dysfunction in patients given diagnoses of ME or CFS, and how CBT and GET approaches may endanger patients in this context; 5. The inclusion of major mental illnesses in the research cohort; 6. The distortion by PACE trial researchers of 'pacing' from an autonomous flexible management strategy for patients into a therapist led Graded Activity approach; 7. The post hoc dismissal of adverse outcomes as irrelevant to the trial, in direct contradiction to what is scientifically known about the physiological dysfunctions of people given diagnoses of Myalgic Encephalomyelitis or Chronic Fatigue Syndrome ; 8. The instability of 'specialist medical care' as a treatment category, and the lack of any sound category of 'control' group. [[User:Olliec|Olliec]] ([[User talk:Olliec|talk]]) 02:46, 4 March 2016 (PST) :I have reinstated the above summary. It was not in order to completely remove a person's contributions to PACE critique from the main page indefinitely, especially as no clear reason for 'improvement' has been given, and my contribution to PACE critique has been treated differently to others cited here. [[User:Angela Kennedy]] ::~~I copied over again as the citations did not come up correctly but now do. I am thinking that it is just a matter of formatting to look like all other authors and their information. Perhaps saying "Items 1 through 8 discuss main points of citations." and then indented numbered bullets so that it is obvious the points are from the cited paragraphs. Not sure if this was the issue or not but might be.--[[User:DxCFS|DxCFS]] ([[User talk:DxCFS|talk]]) 13:27, 21 April 2016 (PDT) ::[[User:DxCFS|DxCFS]] ([[User talk:DxCFS|talk]])I see. You are citing bullet points from your own blog post. We all know what you state is true, but where are you drawing your conclusions on each bullet point. I know they are really trying to stick to science and scientific conclusions because the future of correct publishing on the PACE trial and appeals in court depend on it.--[[User:DxCFS|DxCFS]] ([[User talk:DxCFS|talk]]) 13:44, 21 April 2016 (PDT) :::I agree with DxCFS and Olliec's general points here. I believe all the others we've cited in that section either have medical credentials, journalistic credentials, or are publishing on behalf of ME/CFS organizations which they represent. I feel that any material we quote should meet one of those criteria. While I know Angela has done a fair bit of work for ME/CFS, I don't know if she actually does meet any of those criteria (Angela: please correct me if you do), and it's usually advised that a person should not substantially edit material that's about them or add material written by them (in short, they should not self-promote). I will fully admit that these criteria are not clearly outlined here, at least not that I'm aware of, but I think if we're going to keep any kind of neutrality to the article, the material published needs to come from an organization or medical/research professional, not just a well-known advocate. <span style="white-space:nowrap; line-height:0;">– [[User:RobinHood70|<span style="color:royalblue; font-size:140%; font-family:Vladimir Script,serif">Robin Hood</span>]] [[User talk:RobinHood70|<sup style="font-size:70%">(talk)</sup>]]</span> 18:22, 21 April 2016 (PDT) ::::I just noticed the section immediately below the one Angela's currently in about "citizen-scientists". Would that, perhaps, be a more appropriate section to list her under? We'd have to remove the word "patient" from the section heading, since she's an advocate and not a patient, though. Still, given the clear context of the section, I'd even say the current content and reference could go there, since that section clearly implies that the persons listed have no related credentials other than significant experience with the topic. The reference would also be appropriate in that context, since it's what she's written. <span style="white-space:nowrap; line-height:0;">– [[User:RobinHood70|<span style="color:royalblue; font-size:140%; font-family:Vladimir Script,serif">Robin Hood</span>]] [[User talk:RobinHood70|<sup style="font-size:70%">(talk)</sup>]]</span> 11:39, 22 April 2016 (PDT) :::::That seems appropriate RobinHood. Her page can also have this post and I assume it does. Whether these 8 posts are listed on this page or perhaps it can be stated there are 8 points as the Blog clearly outlines them. Also, it isn't that she isn't correct in her conclusions, it would be helpful if the blog would show exactly how she came to those conclusions. We have been stating points like these but no one cares unless we can show scientifically and statistically just why these claims are not so or have patient interviews listed and referenced even though PACE authors were not required to do the same scientifically, statistically or have patient interviews referenced.--[[User:DxCFS|DxCFS]] ([[User talk:DxCFS|talk]]) 16:01, 22 April 2016 (PDT) The summary I've produced gives a list of various publications I've had about PACE, including my book, responses to articles that are there for all to see etc. which sets out key points I have made. In this respect I'm like most of the critics of PACE! If people want to read my points at length to adequately convey my points, then please do so. As regards 'citizen scientists'. I find this a strange division from the so-called 'medical credential' preoccupation. I have an academic qualification, and my field of research is the sociology of science. This does make me 'qualified' enough. By the logic of above comments, a GP with no knowledge of the PACE trial problems is more 'qualified' to be quoted than me, or Tom Kindlon for that matter. It's a flawed dichotomy. There should not be any division. People who have made key points should be listed in the same section. On top of this - I was one of the first people to critique the PACE trial. You need to be putting that history (and not just about me) in this frankly. Hooper, Margaret Williams, Jane Bryant, One Click etc. Angela Kennedy
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