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

[Dolphin]

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

 

[EzzieD]

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.

 

[jnmaciuch]

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.

 

[Hutan]

Welcome to the forum @jnmaciuch. Looks like you are going to fit right in.

I hadn't seen this before, taken directly from the PACE Participant Manual:

In the 2004 CBT manual for the PACE trial, for example, the phrase “I feel so tired” is explicitly
listed as an “unhelpful thought,”10 and CFS patients are told that even though they feel that they might need rest, it is unnecessary and detrimental to their nighttime sleep quality.11 At one point, the CBT manual even primes subjects to doubt any potential negative assessment of the treatment’s efficacy: the phrase “I feel just as tired as I did 3 months ago, there has been no improvement in my illness” is listed as an example of an unhelpful pessimistic thought pattern.12

You write very well. I think a paper examining the harms of the CBM beyond physical harm would be useful.

Just some of the interesting points:

Miranda Fricker’s articulation of epistemic injustice identifies two ways in which harm is perpetuated against epistemic agents: testimonial and hermeneutical injustice. In testimonial injustice, the credibility of the speaker, and thus the social value assigned to their knowledge, is diminished due to prejudice. In hermeneutical injustice, a lack of shared conceptual frameworks prevents individuals from articulating their experience in ways that are socially valued. In both cases, epistemic injustice serves to prevent marginalized individuals from fully engaging in the vital social processes of accumulating and utilizing knowledge.

The very formation of the CBM can be characterized by testimonial injustice. The foundational model outlined by Surawy et al. (1995) arose from interviews with 100 CFS patients referred to an infectious disease clinic. Interviewers are granted a privileged position of credibility, implied to be more able to discern accurate patterns of behavior and cognitions than the patient themselves. For example, in the section on illness onset, Surawy et al. write: “Onset was usually reported [by the patient] as having occurred in association with the symptoms of a 'viral illness'. Further enquiry, however, typically revealed major psycho-social stressors and difficulties.”18 Through this interaction, it is heavily implied that the patient’s assessment of which factors were most relevant in illness onset could not be trusted.

The “further enquiry” of the interviewer is framed as a neutral tool to reveal clinically relevant factors, which would otherwise have been obscured by the patient. It is therefore apparent that the foundational principles of the CBM are predicated on interpreting patient testimony through a lens of undue scrutiny—framing the self-knowledge of CFS patients as a potential manifestation of psychopathology, rather than a legitimate source of knowledge in its own right. When contrasted with the presumed rational neutrality of the paper’s authors, it is abundantly clear that the formative conditions of the CBM are representative of Fricker’s definition of testimonial injustice.

Furthermore, since Surawy et al.’s model is meant to serve as the basis for cognitive-behavioral therapy programs, the only way in which a patient might regain any testimonial credibility is through “successful treatment,”–i.e. when the patient demonstrates to a CBT specialist that they have eliminated their “dysfunctional beliefs.” The very statement that challenges the validity of the model– “My illness is physical”–must be disavowed before the patient is considered psychologically sound. Even once the patient is deemed to have regained credibility through successful treatment, their ongoing credibility is dependent on maintaining allegiance with the tenets of the CBM long term, since any future opposition to the model may be framed as a “relapse” into dysfunctional beliefs. As such, the CBM must be understood as creating a self-perpetuating testimonial injustice, since the act of identifying and challenging testimonial injustice from the position of the patient only serves to bolster the existing testimonial injustice.

 

[jnmaciuch]

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.

 

[rvallee]

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.

 

[jnmaciuch]

@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.