Trial by Error continued is PACE a case of research misconduct

[Barry53]

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.

More like a deliberate bit of parasitic marketing.

 

[slysaint]

I needed to get out of my boom-bust pattern by first reducing my activity and then gradually rebuilding

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

What anyone who is acutely ill needs to do is rest and get as much sleep as their body needs to recover first.

 

[slysaint]

Ironic the trial was dubbed "PACE" while promoting CBT and GET over pacing

This was deliberate; see my post on how AfME informed members about the PACE trial. Most people thought it was about pacing.

 

[TiredSam]

All that does is cause distress in a vulnerable group of patients, leads to ill- informed aggressive M.E. activism

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?

 

[jodie100]

@TiredSam I am afraid you have misread my comment. What it is intended to say is some people are distressed or vulnerable , 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.

 

[Barry53]

There are all kinds of aggression, including passive aggression, which is in many ways one of the most abusive forms of aggression. The BPS crew have been doing this to pwme long time now. Interestingly UK law now covers this in domestic abuse cases. Maybe this could be extended to other situations.

 

[MEPatient345]

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.

 

[arewenearlythereyet]

@jodie100 As someone that has experienced GET, I would like to say that yes the beginning part of resetting baseline is good. For me this started with a 2 minute slow walk. It built up to 20 minutes slow walking over 6 months. All good. I should point out that I was signed off work for 5 months and was never bed bound even at my worse.

The problem comes when the Therapist then starts advising jogging. I was using a heart rate monitor at the time and could see a pattern emerging very quickly that my heart rate being elevated for just 2 minutes in the aerobic zone was causing the return of my symptoms.

When I went back to her and said that the jogging wasn't working and I was getting excruciating joint pain returning that made it painful and I was having more frequent crashes, she looked at me funny and suggested that I push on through and was disappointed that I hadn't made as much progress as walking. They see you every 8 weeks in the NHS for a maximum of a year. Since it took me so long to get to 20 minutes walking I was discharged back to my GP before they could berate me further. Needless to say I didn't progress with the jogging and then running full pelt for 20 min as advised.

This is the problem. The first bit is sensible pacing technique, the second bit "push on through" is bad advice and causes the opposite of what it was designed to do. In fact the main problem is that the therapy is to cause more harm and put people in a bed bound state far faster than will happen naturally. This appears to be a relapsing remitting disease and each time you fall back from remission you are more likely to end up worse off than before.

The fact that it's called PACE has nothing to do with pacing ... if one were to call it something more accurate I would pick FLOG (as in flogging a horse until it's dead)

 

[Invisible Woman]

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.

While I can't agree with @jodie100 I do agree that criticisms that help remove errors and refine our arguments to rid ourselves of ineffective and potentially very harmful treatments can only be a good thing.

 

[MEPatient345]

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.

 

[Barry53]

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.

"This thread has been very aggressive ..."

There is a major difference between being aggressive and assertive. If people always went about saying people were being aggressive, when in fact they were being justifiably assertive ... where would we be? (Answers on a postcard please).

David Tuller is right to help begin a public conversation on this, knowing that it will be for others with specific skills to make some of the further progress. The staying silent approach only ever plays to PACE.

 

[Esther12]

I thought some of Jodie's comments were unreasonable, but it also looks like she did spot an error in Tuller's blog, so I thank her for that. I think that people often do jump to commenting on the aspects of a post that they disagree with. Exploring disagreements is normally so much more interesting than joining a consensus. Also, Jodie's first comment was pretty 'assertive' itself, so that may have had some impact on the tone of responses.

 

[jodie100]

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.

Thanks, that was exactly the point I was trying to make about Tuller bringing the term "research misconduct" into his discussion .

I also don't like to see patients given the wrong information from somebody they would assume was speaking from a position of knowledge, and the economics part of that article is very clearly wrong in many ways. I have not read the rest of it in any detail but probably don't agree with it all either. My post criticising the article is not showing on the Virology blog, and I think although the most obvious errors are corrected the analysis of the PlosOne paper is still based on some ill-founded assumptions.

 

[MEPatient345]

@jodie100 David posted on Facebook that your comment disappeared. He thinks you removed it. Perhaps you can repost.

 

[Barry53]

@jodie100 David posted on Facebook that your comment disappeared. He thinks you removed it. Perhaps you can repost.

Disconcerting?

 

[Esther12]

I can see two copies of the comment on virology blog, under the name 'jmtc'.

 

[Snowdrop]

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.

But why the focus again and again on Tuller and correcting people with ME.

When there has been a horrible injustice that affects a huge number of people a few will respond perhaps intemperately. There is no way to control that.
Their style may not be perceived as the most effective but here's the point really -- they are stuck in a situation not of their own making out of their control and the institutions that are in place in their society are failing them spectacularly, deliberately, knowingly, they are profiting from that failure to help and have rich full lives unaffected by this blight that we live every day. Some of these people (advocating) may indeed be in the desperate and most vulnerable category and therefore behave as such.

I think if there are any allowances to be made it most certainly should not be for those poor researchers who, even if they did not understand in the beginning what harm their research trajectory would have they are very aware now. AND THEY DON'T CARE.

 

[jodie100]

I can see two copies of the comment on virology blog, under the name 'jmtc'.

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.

 

[slysaint]

I also don't like to see patients given the wrong information from somebody they would assume was speaking from a position of knowledge

I agree; and we have, and still get, far too much from those who are supposed to be acting in our best interests,
which is why I find it strange that you will pick up on David Tuller, and yet seem quite happy to take everything the MEGA team put out at face value, and will defend parts of PACE and other BPS research. (I am referring to previous posts, not just the ones on this thread).

I just don't understand why

 

[Invisible Woman]

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.

From @Esther12 post I assume that you are posting as jmtc. I have just had a look and couldn't see your comments. I checked using both firefox and chrome in case it was a browser issue.

Perhaps respond to David on Facebook? You're comment was worth making and it is a shame for all concerned if it can't be seen.