tag:blogger.com,1999:blog-6659981920998562195.post59721301830196245..comments2024-02-19T11:57:08.864+00:00Comments on Super Pooped: Adventures for the Exhausted: The PACE Trial Fiasco (for ME Awareness Hour blog)Hannah Radenkovahttp://www.blogger.com/profile/17182949623983124195noreply@blogger.comBlogger7125tag:blogger.com,1999:blog-6659981920998562195.post-63287989560678186372016-09-25T14:50:22.703+01:002016-09-25T14:50:22.703+01:00PS Thanks for the link to Peter Kemp's blog. I...PS Thanks for the link to Peter Kemp's blog. It's easy to forget about the participants, who acted in good faith. Which is more than can be said for the researchers or the media.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6659981920998562195.post-5863656822325942792016-09-25T14:29:44.650+01:002016-09-25T14:29:44.650+01:00Such a relief that the truth is finally coming out...Such a relief that the truth is finally coming out about this trial! The list of flaws is so long and so obvious that even an amateur like me can grasp it. Textbook 'bad science'. You sum it up really well. Samantha xAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-6659981920998562195.post-25219876526827508142016-09-20T02:45:24.320+01:002016-09-20T02:45:24.320+01:00Excellent post! I am so glad to see a well thought...Excellent post! I am so glad to see a well thought out review of this research and I'm relieved that somebody has their critical thinking cap on! I've always believed that CBT and Graded Exercise are overrated at best and damaging at worst for people with CFS/ME and other chronic diseases and this confirms it! I think both of these modalities offer sufferers false hope and take advantage of people who are desperate for some kind of relief. I've tried both at one time or another and they left me not only feeling worse physically but feeling emotionally inadequate and frustrated.<br /><br />Besides, the persistence of some scientists and physicians in pushing these methods speaks to an even more insidious wrong against chronically ill people, as its underlying agenda suggests that these types of illnesses are functional (in the psychogenic sense of the word) which is something that educated patients have fought hard to prove should be relegated to the dustbin of history. That theory does nothing to serve the needs of those who continue to be ill despite trying all sorts of remedies, cheapens our experience and inner wisdom, and insults our intelligence. I wholeheartedly agree that "Piece of crap" really sums up such a badly skewed study, and I think institutions would be better served to put their grant money into finding real treatments that respect the dignity of the patient. I worked on a research team for several years and learned alot about how scientists manipulate data when there's something in it for them, and anytime a team refuses to release their raw data that's a red flag!<br /><br />Just like Big Pharma, CBT is big business and what most don't realize is that the health insurance companies love it because it plays right into their hands in their wish to limit (AKA ration) care. It is considered a short-term method, and it's not enough that its proponents want to use it for every mental illness known to man, but they now see it as a way to put a time limit on getting well from all sorts of physical illnesses that are in truth life-long. <br /><br />I've seen some people with chronic illness say that it helps them and although they probably truly believe that what I observe is that they are no less ill because of it nor do they cope any better with illness than the rest of us, but rather are lulled into a false sense of security, almost cult-like in nature. Most of the people I've met who believe in it seem to be overly dependant on it and on their therapists, and most of them don't even want to look at nor hear independent opinions like those expressed in this blog post. In fact I was kicked out of a Facebook group (which unbenownst to me was a group of loyalists) for saying I thought it was a raquet for the most part, that it didn't work for me, added insult to injury, and that it was not for everybody. <br /><br />My impression as an observer was that alot of them lived their lives as a series of memes as a way to avoid or deny their illness in an effort to wish it away. There was a brainwashing quality to it that struck me as really creepy. In my opinion both CBT and GET are just forms of learned dissociation (dangerous for someone to be in the habit of reframing very real symptoms going on in their bodies because they might not act on something that should be brought to a doctor's attention or they might overdo it with physical exercise in the mistaken belief that if they learn how to view their pain or other symptoms as something else that they'll eventually make it go away).<br /><br />Needless to say, the Facebook group Admin's emotional regulation skills were not that great if she was so bothered by diverse opionions that she reamed me out, then deleted her post on the messageboard, and dumped me from the group. I rest my case, LOL.<br />Giftbearerhttps://www.blogger.com/profile/11698066439644185753noreply@blogger.comtag:blogger.com,1999:blog-6659981920998562195.post-28162854299516258872016-09-18T12:16:55.119+01:002016-09-18T12:16:55.119+01:00Thanks, dude! I'll check that out :)Thanks, dude! I'll check that out :)Hannah Radenkovahttps://www.blogger.com/profile/17182949623983124195noreply@blogger.comtag:blogger.com,1999:blog-6659981920998562195.post-55984709009078978022016-09-18T00:35:59.030+01:002016-09-18T00:35:59.030+01:00Nice 1 !
Also see PACE trial review @ https://www...Nice 1 ! <br />Also see PACE trial review @ https://www.researchgate.net/publication/301202396_The_PACE_Trial_Invalidates_the_Use_of_Cognitive_Behavioral_and_Graded_Exercise_Therapy_in_Myalgic_Encephalomyelitis_Chronic_Fatigue_Syndrome_A_ReviewDr Speedyhttps://www.blogger.com/profile/04873114586852370992noreply@blogger.comtag:blogger.com,1999:blog-6659981920998562195.post-90325958525734787552016-09-18T00:34:21.644+01:002016-09-18T00:34:21.644+01:00This comment has been removed by the author.Dr Speedyhttps://www.blogger.com/profile/04873114586852370992noreply@blogger.comtag:blogger.com,1999:blog-6659981920998562195.post-41606999757641463052016-09-17T13:54:21.753+01:002016-09-17T13:54:21.753+01:00Thank you so much for this excellent and in-depth ...Thank you so much for this excellent and in-depth article on the pace trial. We very much appreciate it, especially being ill from this disease yourself.<br />ME Awareness Hour.Amanda Carrollhttps://www.blogger.com/profile/09735818802590422688noreply@blogger.com