A critical commentary and preliminary re-analysis of the PACE trial

[Gijs]

@Tom Kindlon, Is this the peer reviewed publication of the pace trial? Or is there another one? Thx all for your hard work!

 

[Tom Kindlon]

@Tom Kindlon, Is this the peer reviewed publication of the pace trial? Or is there another one? Thx all for your hard work!

Thanks. This is a peer-reviewed paper.

It is hoped there will be one or two more papers published eventually.

 

[JoanDublin]

Full text at http://www.tandfonline.com.sci-hub.cc/doi/abs/10.1080/21641846.2017.1259724

Can't seem to get the full text at that link. Getting some strange Cyrillic alphabet things coming up on the page

 

[Valentijn]

Can't seem to get the full text at that link. Getting some strange Cyrillic alphabet things coming up on the page

@JoanDublin - It should start a download of the pdf. It's sci-hub, which is a Russian site.

 

[JaimeS]

Article by Simon McGrath, summarizing results on #MEAction here:

http://www.meaction.net/2016/12/14/...ecovery-doesnt-mean-getting-your-health-back/

 

[Denise]

Thank you so much, @Simon and others!

Is "Fatigue: Biomedicine, Health & Behavior" connected to PubMed now? Will article be visible there?

Yes, "Fatigue..." is now connected to PubMed though not every article gets on there.

 

[Comet]

Thank you all so much!

 

[AndyPR]

Ellen Gouldsmit is whinging about the paper on the ME Associations Facebook page share of the article, if anybody is remotely interested in what she has to say. I point this out just in case she is actually raising valid points but unfortunately she just comes across as highly irritating to me.

 

[Solstice]

Ellen Gouldsmit is whinging about the paper on the ME Associations Facebook page share of the article, if anybody is remotely interested in what she has to say. I point this out just in case she is actually raising valid points but unfortunately she just comes across as highly irritating to me.

Got a link to that? And would that link be readable without a facebook account?

 

[deleder2k]

Ellen Gouldsmit is whinging about the paper on the ME Associations Facebook page share of the article, if anybody is remotely interested in what she has to say. I point this out just in case she is actually raising valid points but unfortunately she just comes across as highly irritating to me.

https://www.facebook.com/permalink....1240679965989659&comment_tracking={"tn":"R2"}

 

[AndyPR]

Thanks @deleder2k , I couldn't seem to figure it out. Weirdly she was the one to share it with the ME Association in the first place, can't see the point in doing that and then being so critical about it.

 

[Artstu]

Thanks @deleder2k , I couldn't seem to figure it out. Weirdly she was the one to share it with the ME Association in the first place, can't see the point in doing that and then being so critical about it.

You have to put the stage in place before you get on it

No booing at the back please

 

[JaimeS]

The community has legitimate reasons to view research with a critical eye, but this knee-jerk criticism of any researcher who dares try to help us, even if their reputation is unimpeachable and their arguments are sound, is patients standing in their own way.

I understand that sometimes people have a bad week, and vent in whatever direction. And frankly, there will always be crazies. That's life. There will also be disagreement regarding whose arguments are sound... though I wouldn't have thought that would be in PACE!

But I think it's becoming part of our culture as a group, that it's okay to vent -- nonsensically, even -- in the direction of even good science. To clarify, I think we haven't been "too rough" with the PACE contingent, and poor science should always be exposed, for the good of society. But maybe we should make sure it's bad science, before decrying it!

On FB post there is a claim that the authors don't really understand GET... immaterial to the argument of the paper, which is that 'recovery' is not actual recovery. The paper's thrust was not an attempt to explain GET in context.

@AndyPR that seems to be modus operendi of some folks -- bring critical attention in order to delegitimize something they disagree with. By ensuring it is more widely seen, they ensure it is more widely criticized by their contingent, whomever that is.

You have to put the stage in place before you get on it

Yep.

J

 

[Cheshire]

On FB post there is a claim that the authors don't really understand GET... immaterial to the argument of the paper, which is that 'recovery' is not actual recovery. The paper's thrust was not an attempt to explain GET in context.

This is one of the comments made by Ellen Goudsmit that @AndyPR was angry about.

She judges the quality of a paper with one only criterion: "has it been done by me?" Then this is good work. If not, it can only be the result of these unknowledgeable patients who understand nothing.
With friends like her, no need to have ennemies...

 

[JaimeS]

She judges the quality of a paper with one only criterium: "has it been done by me?"

....I left that part out. With patients (and researchers, and clinicians!) having gone without a concrete answer for so long, opinions continue to develop, solidify into theories, and -- unless the proponents are careful -- calcify into belief systems. In order to find the answer(s), we have to be willing and able to let go of what we think we know when the time comes.

I hope we will be able to!

(Just realized, kind of tangent-y! I mean to say that perhaps this is part of why we are so attached to our own ideas / own research... though the criticisms we're seeing are more like "why didn't they write an entirely separate paper with the focus I would have chosen" which we also see a lot: how dare they look at viruses when my interest is in bacteria, how dare they have examined genetics when everyone knows it's environmental... as far as I know, we still don't know, and as I've said before, if others have some unique insights, please share them and provide references!)

 

[Marco]

Well done to all involved.

That spikes the usual response to any critical analysis of PACE to date - i.e. 'it's only a blog'. Not any more. Part of the scientific literature and citable.

The (mis)use of normative data was spectacular which makes me wonder what the peer reviewers were thinking (if at all - actually I probably wouldn't have bothered checking the source data myself assuming that it wasn't being misrepresented).

 

[JoanDublin]

@JoanDublin - It should start a download of the pdf. It's sci-hub, which is a Russian site.

Doesn't appear to be doing that for me. Maybe it's my ipad. Will have a go on the PC later. Thanks

 

[Esther12]

She judges the quality of a paper with one only criterion: "has it been done by me?" Then this is good work. If not, it can only be the result of these unknowledgeable patients who understand nothing.
With friends like her, no need to have ennemies...

She does seem to have a bit of an ego problem. A shame when things like that get in the way.

Excited to give this a careful read. Looked very good at first glance.

 

[Barry53]

Can someone help me with this graph please ...

I know for sure I am misunderstanding something important here, but I cannot see what. The y-axis is "percentage of sample", so it looks (to me ) like it is saying around 65% of participants achieved 100% physical function. I am obviously misinterpreting something. Is the y-axis really "percentage of sample"? or is it a cumulative value somehow?

Also, if I understood this better, then maybe I would also see where the "13% of participants qualified as recovered on this revised criterion before the trial even began" fits into this graph.

Thank you in advance.

 

[Hutan]

@Barry53, the blue bars represent the population sample, not the trial participants. I forget the details of the population sample, possibly it was UK working age people, but the gist is that most people in the general public have physical function ranging from 95% to 100% function as measured on the SF36 Physical Function assessment.

So when the PACE trial originally had a recovery threshold of 85%, that was a level of function significantly below most in the general population and so already fairly lax. The new recovery threshold at the 60% mark was a complete joke.