Commentary: Graded Exercise Therapy and Cognitive Behaviour Therapy Do Not Improve Employment Outcomes in ME/CFS, 2022, Tuller and Vink

Peter T

Peter T

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Percentage of people with ME/CFS able to work or attend school

The latest Virology blog:

“Trial By Error: Research From GET/CBT Ideological Brigades Shows No Improvements
in Work Status” see https://www.virology.ws/2022/09/30/...cFRaFRhyrMqR0-pJmToPmXst9jJIv34WzPlj5myMAi6Cs

reports on a pre print article by @dave30th and Mark Vink “Commentary:
Graded Exercise Therapy and Cognitive Behaviour Therapy Do Not Improve Employment Outcomes in ME/CFS” containing the part of the text dealing with PACE and for the full text see https://osf.io/kjm3f/

which tangentially refers to levels of unemployment.
 
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Great article. The absurdity of subjective and objective outcomes giving different data and successfully making it about how it's the objective outcomes that are wrong is probably the strongest argument to repair the disaster of what EBM has become.

Of course the entire psychosomatic ideology depends on it, but this is by far the best wedge to hammer and break apart.

I doubt it will have any real impact, there is no shortage of bad excuses, but to have this on record can accelerate the end of this dystopian nightmare. It simply never looks good, indefensible.
 
Trish said:
It's such an important analysis put rightly in historical context.
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Thanks, Trish--Mark had already done the analysis of the other studies, so that was the real heavy lifting. I thought it was good idea to highlight the point and pull all the data together, and point out this was part of the plan from the start of the CBT/GET "project." it's always irritated me how the PACE authors skated right over the failures of the objective outcomes and then denied they were objective after all.
 
The response to how employment data are unreliable because they are economic data points, rather than medical, is especially malicious, as they are implying that those people could work if they wanted to, that the people who do not get back to work but "improve" based on their subjective assessments are able to work but choose not to.

Because of course being able to work is a valid medical data point. Our entire societies are built around the need to work. But they simply hand-wave it off with cheap inuendo.

Getting people back to work was always the only end-goal here, the other side of reducing healthcare expenses. And it fails, in fact most studies show slightly worse outcomes. This is a scam that ruined millions of lives and it didn't even accomplish any of its goals. A comparable failure to the war on drugs, widely seen as a failure, still ongoing, still funneling billions to organized crime and other nasty people. All for nothing.
 
rvallee said:
Getting people back to work was always the only end-goal here,
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I think there's actually a lot going on. Some of the therapists genuinely wanted to feel that they were helping the poor people who don't know how to eat, sleep and get off the couch properly. An overlapping number wanted to prove that they were right, and all their critics were wrong, and get appreciation from people with power. And an overlapping number wanted to protect the investment they had made in their rehabilitation careers.

The DWP was probably less concerned with getting people back to work than they were concerned about making sure that people didn't claim benefits. Although they might not have consciously thought it, they might therefore have been less concerned about people becoming healthy again, and more concerned with resetting people's ideas of what sort of health is compatible with working. And increasing the level of shame associated with 'treatment-resistant' ME/CFS, so that people didn't linger with that diagnosis on benefits.

rvallee said:
The response to how employment data are unreliable because they are economic data points, rather than medical, is especially malicious, as they are implying that those people could work if they wanted to, that the people who do not get back to work but "improve" based on their subjective assessments are able to work but choose not to.
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I do have a little bit of sympathy with the view that employment data isn't a terribly useful outcome for ME/CFS research.

It will often take someone quite a long time to get back into work. A history of being out of the workforce for years wth a stigmatised health condition doesn't make it easier. And then there are economic effects, it might be easy or hard to get a job.

People might try to do too many hours if they have convinced themselves that they are better, and that will only be sustainable for a while. Alternatively, people may have learned from trying to get back into work that jumping back to a lot of hours caused a relapse, so they may sensibly want to take a cautious approach, doing less than they possibly could.

Edited to add: Possibly having had ME/CFS might result in lifestyle and outlook changes that make someone more inclined to be comfortable with a lower income with less time devoted to work and more time devoted to family, meaningful hobbies and volunteering.
 
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Hutan said:
A history of being out of the workforce for years wth a stigmatised health condition doesn't make it easier. And then there are economic effects, it might be easy or hard to get a job.
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I agree. These are valid considerations as to whether employment is the most reliable objective outcome. It might not be for a variety of reasons. But in this case of course the employment outcomes are the same across different time periods and study designs. And the poor outcomes for employment in PACE were in line with the poor outcomes on other objective outcomes.

Also the point isn't just whether people get back to work. It's about benefits from the treatments. In a poor job environment, maybe no one gets back to work, but you might see less employment loss among those treated with therapy than among those not treated, if the treatment actually worked.
 
rvallee said:
The response to how employment data are unreliable because they are economic data points, rather than medical, is especially malicious, as they are implying that those people could work if they wanted to, that the people who do not get back to work but "improve" based on their subjective assessments are able to work but choose not to.

Because of course being able to work is a valid medical data point. Our entire societies are built around the need to work. But they simply hand-wave it off with cheap inuendo.

Getting people back to work was always the only end-goal here, the other side of reducing healthcare expenses. And it fails, in fact most studies show slightly worse outcomes. This is a scam that ruined millions of lives and it didn't even accomplish any of its goals. A comparable failure to the war on drugs, widely seen as a failure, still ongoing, still funneling billions to organized crime and other nasty people. All for nothing.
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Just as interesting is that Stevelink et al., which included Professor Trudie Chalder, concluded that “work-related outcomes should be targeted” in treatment for ME/CFS but for whatever reason they forgot to mention the null effect on work related outcomes in her own pace trial.

Anybody knows why she did that?
 
Mark Vink said:
Just as interesting is that Stevelink et al., which included Professor Trudie Chalder, concluded that “work-related outcomes should be targeted” in treatment for ME/CFS but for whatever reason they forgot to mention the null effect on work related outcomes in her own pace trial.

Anybody knows why she did that?
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Yup. I forgot to mention that most important detail but it's precisely because this is all used to get people back to work that this argument is absurd, that's why the DWP was involved in the first place. It's what they claim, then they turn around and say it's not a valid outcome, even though it's the outcome they sold. This is what's behind the whole "graded return to work" thing. It's the only goal here.

But it takes knowledge of what they say and think beyond the papers themselves to know this. Just like we know their misinterpretation of PEM is the usual post-exercise fatigue everyone knows and (usually) love. There is knowledge outside of an academic paper that informs what goes in it but people pretend like it's said in a vacuum.
 
rvallee said:
This is what's behind the whole "graded return to work" thing. It's the only goal here.
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It is the core of their sales pitch to the powerful. The promise of getting patients back to work is how they get so much support and protection.

Their whole project would never have got off the ground if they had not framed in that way.

Which is why they have to spin the clear failure to deliver on that core outcome as due to everything else except their model and treatment.
 
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