More like a deliberate bit of parasitic marketing.Ironic the trial was dubbed "PACE" while promoting CBT and GET over pacing, which the data showed to be the most effective modality in managing ME/CFS.
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More like a deliberate bit of parasitic marketing.Ironic the trial was dubbed "PACE" while promoting CBT and GET over pacing, which the data showed to be the most effective modality in managing ME/CFS.
I needed to get out of my boom-bust pattern by first reducing my activity and then gradually rebuilding
What anyone who is acutely ill needs to do is rest and get as much sleep as their body needs to recover first.avoiding boom-bust behaviour, setting a baseline you can manage each day without getting worse, and good sleep management in helping people in the earlier stages of their illness
This was deliberate; see my post on how AfME informed members about the PACE trial. Most people thought it was about pacing.Ironic the trial was dubbed "PACE" while promoting CBT and GET over pacing
I am not distressed, vulnerable, a patient, ill-informed, aggressive or an activist. Although congratulations on covering the full range of stereotypical labels for ME sufferers in one sentence there - vulnerable and aggressive at the same time? Or are they two different subsets of ME?All that does is cause distress in a vulnerable group of patients, leads to ill- informed aggressive M.E. activism
It's essential we have rigour in the reporting on pace so that they cant come after David and discredit him for inaccuracies. And how lucky are we to have people in the community, like @jodie100 who understand some of this stuff, and enough brain function to help edit? It seems David appreciated your critique., hence his edit.
"This thread has been very aggressive ..."There seems to have been a gut reaction to Jodie's first statement. I took her statement about patient activist behavior- which can sometimes go in the wrong direction - to be tied directly to David's editorial choice of leading with the idea of research misconduct, whilst not actually making a judgement on it, and leaving it to others to decide. People often barely read things, and could walk away thinking that David has made a call on this and perpetuate that idea. Patients are vulnerable -- half the time I can barely comprehend the detail of some articles. So, putting catch phrase statements out like "research misconduct" could easily become a rallying cry for patients when in fact, no one has found this yet, legally, even if it seems obvious as a casual statement to make.
I think that's what Jodie was reacting to, and fair enough that she can have an opinion on it. It doesn't mean she's tearing david down entirely. Plus, she's actually trying to be protective of the patient community. We are vulnerable. There are misunderstandings. They can lead to ill informed activism.
This very thread has been aggressive toward @jodie100 because she had a critical POV on a piece written by someone we all admire. There are many comments implying she is therefore pro pace and doesn't understand what GET is. I've been reading it going.. wtf? Here's someone who helped finesse a piece, and is protective of patients being totally not credited for it. It's a bummer.
Thanks, that was exactly the point I was trying to make about Tuller bringing the term "research misconduct" into his discussion .There seems to have been a gut reaction to Jodie's first statement. I took her statement about patient activist behavior- which can sometimes go in the wrong direction - to be tied directly to David's editorial choice of leading with the idea of research misconduct, whilst not actually making a judgement on it, and leaving it to others to decide. People often barely read things, and could walk away thinking that David has made a call on this and perpetuate that idea.
Disconcerting?@jodie100 David posted on Facebook that your comment disappeared. He thinks you removed it. Perhaps you can repost.
some M.E. activism( referring to the activism style, not individuals) including from people without M.E. is aggressive or ill-informed. It is obviously not trying to apply all those characteristics to everybody or necessarily simultaneously.
That would be my comment although it's not showing at all for me. I did post it a second time yesterday morning after I noticed Saturday's post had disappeared as I thought it was a software glitch, so that would probably explain why it is showing up twice. I don't know why some people can see it and others not.I can see two copies of the comment on virology blog, under the name 'jmtc'.
I agree; and we have, and still get, far too much from those who are supposed to be acting in our best interests,I also don't like to see patients given the wrong information from somebody they would assume was speaking from a position of knowledge
That would be my comment although it's not showing at all for me. I did post it a second time yesterday morning after I noticed Saturday's post had disappeared as I thought it was a software glitch, so that would probably explain why it is showing up twice. I don't know why some people can see it and others not.