The Epistemic Injustice of the Cognitive Behavioral Model of Chronic Fatigue Syndrome, 2023, Maciuch

I am not sure whether the full paper is available publicly at the moment but perhaps this might be of interest to somebody

https://www.wellesley.edu/lts
Independent Study Award
Jessica Maciuch ’22 has won an Independent Study Award for her PHIL 350 paper, “The Epistemic Injustice of the Cognitive Behavioral Model of Chronic Fatigue Syndrome.” Supporting Faculty: Alison McIntyre

---

Jessica Maciuch PHIL 350 (Spring 2022) Research Strategy for “The Epistemic Injustice of the Cognitive Behavioral Model of Chronic Fatigue Syndrome”
https://repository.wellesley.edu/islandora/object/ir:1927/datastream/PDF/view

 

The summary looks good - the author has ME herself and is aware of, and critical of, PACE and the BPS belief systems as regards ME, and she cites the Epistemic Injustice paper by Keith Geraghty et al and the Carolyn Wilshire et al re-evaluation of PACE. It would be interesting to see what the full paper is like.

 

Oh wow, what an honor to see some discussion of my work! This was a capstone project for my undergrad degree (the linked summary is from a submission to a library research award in which I was asked to outline my research strategy). It's probably not publication quality, but I've attached a PDF if anyone would like to read it. Ultimately it was an attempt to articulate some of my experiences as someone with ME/CFS through existing philosophical frameworks.

 

Thanks for the kind words! And very happy to see discussion of this paper in an ME/CFS forum since that was one of the focal points of my argument!

Just for full disclosure to anyone perusing this thread:
As noted in the research summary, the PACE manual was sourced through MEpedia, since I anticipated considerable difficulty getting direct access to study materials considering the public backlash. I did my best to verify its authenticity as much as possible, but I can’t claim with 100% certainty that it was used in the trial.

 

If my memory serves me, I think that those materials are all preserved on the PACE trial website. In fact they have been referenced positively many times since, including a recent update of CFS guidelines in Australia.

They don't seem to mind their own words being used against them. They're more used to the fact that it makes no difference. Simon Wessely has a huge archive of his own writings on his website. Also very damning. Doesn't bother him, he's at the peak of his influence right now.

I hadn't looked much at your thesis before, but the excepts from Hutan above show a solid understanding of the issues.

 

@rvallee Appreciate the info! From a quick glance it looks like the publicly archived version is the same text I have saved in my old research materials. I remember digging through the published protocols for the PACE trial several years ago when I first started working on this project, but it seems like those particular links eluded me at the time. (And since it was an undergrad project not intended for publication there wasn't much of a need to revisit sources). But that's definitely something I'd update for the future.

And as you mention, there's also a need to update discussion of the status of PACE trial findings among various public health institutions. At the time of writing I was observing a tentative trend towards rejecting CBT and GET--I guess I can only consider it extremely ironic that those exact trends of epistemic injustice ended up swinging the pendulum in the other direction since then.