Media coverage of Matthees PACE recovery reanalysis: post links here

Sean

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While it is nice to see, and credit where it is due, it should also be noted that the Science Based Medicine site do not have a good track record on ME/CFS stuff, being typically little more than another Wessely mouthpiece, and more than a little full of themselves and their scientism. :meh:

They have a lot of bridge building to do.
 

Kalliope

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I was referring to the picture behind the title which was a of a guy looking tired in front of a computer. Agree that a man jogging on a beach is not a precise image of GET :confused: (I actually first thought it was an ad that had nothing to do with the article).
 

wdb

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Science Based Medicine site do not have a good track record on ME/CFS stuff, being typically little more than another Wessely mouthpiece
Have they been that bad ? I see they were skeptical of XMRV which they were right to be, they've written advising caution regarding Rituximab until stronger evidence is in which is reasonable, I can't find any articles defending the PACE trial. I wouldn't put them in the same category as Science Media Centre.
 

user9876

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While it is nice to see, and credit where it is due, it should also be noted that the Science Based Medicine site do not have a good track record on ME/CFS stuff, being typically little more than another Wessely mouthpiece, and more than a little full of themselves and their scientism. :meh:

They have a lot of bridge building to do.
I wonder if this represents that some people within a UK community are reassessing things with respect to PACE. Possibly because a number of academics have pointed out the issues or perhaps they can see keeping bashing ME patients will get increasingly embarrassing for them.
 

Esther12

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Have they been that bad ? I see they were skeptical of XMRV which they were right to be, they've written advising caution regarding Rituximab until stronger evidence is in which is reasonable, I can't find any articles defending the PACE trial. I wouldn't put them in the same category as Science Media Centre.
Nowhere near as bad as the Science Media Centre, but Harriet Hall always seemed like someone who respected Edward Shorter. There was also a contributor who has since died, but was very keen on psychosomatic explanations for CFS and other stuff.
 
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While it is nice to see, and credit where it is due, it should also be noted that the Science Based Medicine site do not have a good track record on ME/CFS stuff, being typically little more than another Wessely mouthpiece, and more than a little full of themselves and their scientism. :meh:
With a few notable exceptions, I actually found SBM to be quite balanced on ME/CFS - at least across the selection of posts there.
 
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Julie Rehmeyer Nails it:

One patient, Julie Rehmeyer, pointed out the problem with subjective reports:
But the subjective reports from patients seemed suspect to me. I imagined myself as a participant: I come in and I’m asked to rate my symptoms. Then, I’m repeatedly told over a year of treatment that I need to pay less attention to my symptoms. Then I’m asked to rate my symptoms again. Mightn’t I say they’re a bit better — even if I still feel terrible — in order to do what I’m told, please my therapist, and convince myself I haven’t wasted a year’s effort?​
 
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Julie Rehmeyer Nails it:

Yup, what is often loosely called a bit of 'psychology'!

Have they been that bad ? I see they were skeptical of XMRV which they were right to be, they've written advising caution regarding Rituximab until stronger evidence is in which is reasonable, I can't find any articles defending the PACE trial. I wouldn't put them in the same category as Science Media Centre.
Harriet Hall's piece on rituximab was ill-informed, and seemed sniffy and knee-jerk in tone. This new piece does a lot to restore her credibility for me, although it reads strangely more like a piece of routine journalistic reporting for the Milwaukee Daily Record than an original opinion piece. Maybe that actually reflects a deliberate desire to show she is on board, as much as wanting to say something new. No harm in that.

It's good to see it out there - and clearly and reasonably written.
 

alex3619

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Just posted this reply to someone who defended CBT though not the PACE trial:

The CBT approach used in the PACE trial is well documented, they have a handbook for their therapists, and has little to do with classical CBT. It is CBT in name only. So lessons learned from regular CBT do not apply, and it cannot be compared with the CBT used in PACE. This switching of definitions and using common names is common in this study ... these terms, at the least, do not mean what most people commonly understand them to mean - CBT, GET, normal, recovery, CFS, ME, harms.
 
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mfairma

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"This unfortunate episode can serve as a wake-up call and it points out the value of freely sharing raw data with other researchers. Good scientists want to know if they are wrong. They want to have their work scrutinized and should be willing to share their data without the requesters having to resort to a court order."

It may be to her credit to reverse course, but it would be nice if she explored the lessons PACE teaches a little more deeply, because the biggest aren't about data sharing, they're about arrogance and certainty and the willingness in medicine to totally dismiss patients as unreliable observers of their own experiences, sins that are timeless and recur generation after generation in some new form. I'm not a regular reader of the site, but what I have read in the past traffics too much in arrogance and certainty and cultural orthodoxy masquerading as "skepticism." It's nice to have people on our side, but saying those are the lessons to learn is to say that all this has just been some abberation.
 

Sean

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In fairness to SBM, my experience of them was some years ago. They may well have improved since.

Also, I was including commentators in my criticism, as well as contributors. Was some pretty nasty characters allowed to hang out there. The 'I'd prescribe patients a dose of lead to the cranium' types.

So yeah, my view might be a little skewed. :angel:

But, as I said, credit where it is due. If they have changed their tune, then good for them. Just don't want them sneaking their history on this under the carpet.