Fatigue and the mind-body relation: A Lacanian exploration, Diserholt, 2020 (PhD thesis)

I tried watching some of the video. It's shocking the level of ignorance, false assumptions, and incoherent reasoning she displays.

The thing I'm finding most frustrating about this is that I honestly think that twenty years ago I might have written it myself.

My views have changed obviously and I desperately want to critique it and expose the misconceptions from the point of view of someone who would have previously thought like this but it would take so much time and energy that I can't afford it, and that's really annoying me.
 
My views have changed obviously and I desperately want to critique it and expose the misconceptions from the point of view of someone who would have previously thought like this but it would take so much time and energy that I can't afford it, and that's really annoying me.

I'm interested in understanding how they think.
 
Peut-être qu'elle est piégée. I can't speak for her institution or department, but I know from experience that during the 1970/80s a few university departments in France and in Central Canada were dominated by structuralists, marxists, semioticists, and lacanists--whole departments. I recall a couple of professors wearing Lenin caps, with the red star in the front. Believe this or not. (Lacan did not identify as Marxist but he was claimed by them early on, and even by the Right) And if a student did not somehow imbibe those methodologies it was hard to survive. If she is in this kind of environment, then she has little choice: either recite the babble and get the degree or leave without the degree. I was often nauseated by the authoritarianism in these humanitarian halls. I was thrilled when Courtois published The Black book of Communism because that bomb shut up some of them for a bit.

From the little I listened to in that interview (it was so tedious and so passe) she is just repeating a variation of the Lacan mantra. "Human beings are adapted," the famous line from Lacan. A human being in a capitalist society has to fit in, has to be adapted to that system, which means he has to be 'usable' or 'exploitable' by that system. So, folks, if anyone gets ME, they have not been able to adapt to the system and the fatigue is a way of rebelling against the system (capitalist).

This kind of stuff is 45 years old.....or more...what drivel
 
The participants who took part in this study were recruited through the private Facebook group of an Edinburgh-based ME charity, with the exception of two of the participants: one was recruited through their newsletter and another through word-of-mouth arising from the Facebook advertisement.

......It was agreed beforehand with the ME charity that in order for me to be allowed to interview their members in their homes, I would need to have a recent background check, a Protecting Vulnerable Adults (PVG) Scheme which is managed and delivered by Disclosure Scotland. I happened to have had one due to my job as a support worker, the copy of which I sent to and got approved by the committee at the ME charity.

There is a post on here explaining how forming a Facebook Group for X will attract people who have X and those who think they have X. The post even explains how unscrupulous doctors can take advantage of people in Facebook Group X. The post explains how using Facebook isn't a good scientific tool. It returned to my mind as I read about Facebook in her thesis. There is an ME charity based in Edinburgh with some egg on their face. I bet they wish they had listened to the free advice.
 
I can't speak for her institution or department, but I know from experience that during the 1970/80s a few university departments in France and in Central Canada were dominated by structuralists, marxists, semioticists, and lacanists--whole departments. I recall a couple of professors wearing Lenin caps, with the red star in the front. Believe this or not.


Oddly enough, one of the places where this kind of coursework took hold in the United States was in university film studies programs.

Prior to 1977, you could count the number of degreed film programs in the U.S. on one hand. Then, Star Wars was released and George Lucas' attendance at USC's tiny Department of Film and Television suddenly made getting a film degree fashionable. [Steven Spielberg's application to USC was rejected, so he studied film at Cal State Long Beach.]

Film programs had always seemed somewhat frivolous compared to most other university disciplines and they were sometimes regarded as little more than trade schools. Then, with the influx of students (and money) that came in a post-Star Wars world, film studies programs sprung up like weeds across the country.

The new departments were ripe for the promise of gaining respectability among their peers and, filling the void, here came disciplines offering the tortured analysis of signs, symbols and meaning in cinema by way of semiotics, structuralism, politics and psychology.

Film critic Roger Ebert called it “a cruel hoax for students, essentially the academic equivalent of a New Age cult, in which a new language has been invented that only the adept can communicate in."

Below is a fairly hilarious article written in 2003 by a film industry professional who discovered that his daughter was being taught this kind of film analysis at the University of Santa Barbara:


Lights, Camera, Action. Marxism, Semiotics, Narratology
 
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Oddly enough, one of the places where this kind of coursework took hold in the United States was in university film studies programs.

Prior to 1977, you could count the number of degreed film programs in the U.S. on one hand. Then, Star Wars was released and George Lucas' attendance at USC's tiny Department of Film and Television suddenly made getting a film degree fashionable. [Steven Spielberg's application to USC was rejected, so he studied at film at Cal State Long Beach.]

Film programs had always seemed somewhat frivolous compared to most other university disciplines and they were sometimes regarded as little more than trade schools. Then, with the influx of students (and money) that came in a post-Star Wars world, film studies programs sprung up like weeds across the country.

The new departments were ripe for the promise of gaining respectability among their peers and, filling the void, here came disciplines offering the tortured analysis of signs, symbols and meaning in cinema by way of semiotics, structuralism, politics and psychology.

Film critic Roger Ebert called it “a cruel hoax for students, essentially the academic equivalent of a New Age cult, in which a new language has been invented that only the adept can communicate in."

Below is a fairly hilarious article written in 2003 by a film industry professional who discovered that his daughter was being taught this kind of film analysis at the University of Santa Barbara:


Lights, Camera, Action. Marxism, Semiotics, Narratology
Hi Forbin, What a good read! Boy, I sure time travelled. Thank you. In Canada this stuff was also in the film schools, but primarily in literary studies. In France it was also in literary studies. And what always amazed me was these profs would promote their own books, which were boring as old he.. and they thought themselves superior to the actual literary writers they were discussing! I had/have a passion for history, and when Hayden White was brought into the mix, it was just hard to take, particularly as I was interested in the history of genocide. Thanks again. Stay well.
 
Diserholt p35-36 of thesis said:
My experience of the data collection where I had the first point of contact with those who are diagnosed with CFS/ME resonated strongly with the literature outlined in the previous chapter with regards to the mind-body divide and the vehement dismissal of a psychological viewpoint. What I thought was a relatively neutral advertisement in the ME association’s private Facebook group sparked much controversy, heated debates, demands and questions from a large number of members. The most important question asked was from what perspective I was doing the research (biology or psychology) since this would determine their willingness to participate. This caused debates where people wrote lengthy and numerous posts (from which I abstained) which were centred around the big question: ‘is it a mental or a physical condition?’. Without answering the question of which perspective I adopted (since the answer is a complex one not in line with a black-and-white view of the mind and the body and as avoid as much as possible to influence their participation), I reassured them that I was interested in finding out about their experiences of the condition and any interactions with medical health professionals, and that I was not looking to answer the question of cause or come out the other end recommending one treatment. I also mentioned the importance of keeping it as ‘neutral’/‘open’ as possible when participating in the sense that I was unable to explain all aspects of the research beforehand, in order to minimise influencing their answers. In conjunction with this, I explained that they could withdraw at any point, that the study had been approved by Edinburgh Napier University’s Ethical Committee, and that they will be debriefed afterwards in terms of receiving information about the aims and rationale of the study and how their data would be treated. It may also be worth mentioning that the first person I interviewed returned to the Facebook post explaining that she had just participated in the interview, that it was a comfortable experience and that I had been respectful, and consequently encouraging others to take part. Despite of this, those expressing strong opinions against psychology did not end up taking part in this research, and one of the members from the group, who did take part, emailed me pointing out that the word “psychology” was included on my online research page, thereafter warning me of possible criticism/abuse from the ME community. The reactions to my recruitment advertisement could be understood by taking into account the political context of research on fatigue/CFS/ME, particularly the controversial research study the PACE trial mentioned in the previous chapter, since it was referred to throughout the members’ Facebook comments, in private conversations with me, and throughout their interviews — confirming it is crucial to the shaping of patients’ perspectives on research. However, contrary to what has been suggested — that those endorsing a physical cause of fatigue are against the PACE trial as argued above and for instance in a Guardian article (Chainey, 2017) — what seemingly determined the participants’ endorsement or rejection of the PACE study was a certain perception of the body in relation to the mind; one greatly overlapping with the biomedical view as outlined in the previous chapter. I will therefore in what follows briefly outline a summary of the participants’ view of the mindbody relation, as analysed from the participants’ interviews.

This suggests strong participation-bias of the 7 participants in her interview, and this limits the generalisability of the findings.

Despite this, information from two interviewees was subsequently ignored (of a total of 9):

For the final analysis of the transcripts, I excluded two of the participants’ data and have engaged in analysing a total of seven of the participants’ transcripts throughout this thesis. This was partly due to the nature of the approach taken, a Lacanian one, where a higher quantity would compromise the in-depth nature of the analysis. The second reason was that the data of the two interviewees excluded lacked the depth of the others’ in relation to elaborations of life events: the attention of their interviews was devoted mainly to the encounters with health professionals and not many details were revealed beyond this, which makes an analysis of symptom formation difficult/impossible. This shortcoming could partly be due to my interview skills, particularly considering one of these was my first interview. Additionally, neither of them returned for a second interview, which affected the amount of data obtained. There is one person I included with whom I only conducted one interview; however, she elaborated extensively on many areas pertaining to her life and her experiences with CFS/ME in a lengthy interview

Confirmation bias in action:

I admit I came into this research with a narrow view of the mind-body relation, believing there was a strong possibility of the research ending up being ‘just another’ one on depression. This turned out to be far from the case, and fortunately my views changed and became less rigid. There was particularly one significant moment which radically changed my position in relation to the texts, which I mentioned briefly above as being the point at which I begun focusing on the associative networks present in the text9 . Before this, I was seduced by Freud’s theory of ‘actual neurosis’, which I more or less imposed on the text. Briefly, this theory states that the cause of the symptom — symptom here being used in a Lacanian sense in terms of the underlying structure of a ‘condition’ — is somatic and not psychical, and thus the symptom corresponds directly to a physical sensation and more precisely anxiety (or an anxiety equivalent such as fatigue) as a result of an accumulation of tension which has been unable to be mentally processed. If a symptom takes on this structure, one would be unable to find any symbolisations in the speech surrounding the condition, or in other words an associative network where the symptom would be linked to discourses surrounding life events and other subjective factors. This is in stark contrast to that of a psychoneurotic symptom and the more commonly known conversion symptom, which has been formed due to a psychical conflict and constitutes a formation of the unconscious, a symbolic message addressed to the Other, where the body has taken the place of certain signifiers, answers or questions, as an attempt to symbolise that which was not symbolised. In this case, we would find a plethora of connections between signifiers and various meanings surrounding descriptions of their symptoms and various events or thoughts.
 
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I can't imagine many of you made it through to the 40 minute mark, but I was pitting cherries and so time passed. There were a couple of passages just after 40 minutes that I thought were worth recording here:

Diserholt:
a very complex area, where fatigue is both this sort of trying to use attention to signal the presence of the body or the subject and, but then also just trying to disappear into this hole of nothingness, numbing into this hole of nothingness.

So, so, I find it is difficult but it's very fascinating.

Um, and I'm kind looking at that through, also, like, mourning, the concept of mourning. Ah, and I guess just the demand for a biomedical diagnosis as well. Sort of, how certain impossibilities play out through those, ah, things.

Interviewer:
It's a really good point, like what you brought up earlier with [condensation?] and how things are so multiply determined, um, and that they're usually, well always, symptoms fulfilling many functions at once. So, this idea that you can have a diagnosis or, like, solve like a biologically condoned problem. Like 'this is it' and 'that is the solution'. It doesn't work.

Diserholt:
Yes. Yeah, exactly. Yeah. People want it but they don't want it as well. And that's kind of another thing that I'm also kind of seeing in interviews and especially maybe some more than others. That, you know, it's very prevalent with, ah, those that are diagnosed with it that they have campaigns for people to take it seriously and to be recognised as a medical condition, something that is real and deserves, you know, attention and appropriate treatments and stuff. But, ah, then, yeah. It's like there's a demand for this but there is also the impossibility, when you are refusing, like, if there is a refusal of the symbolic world, you know, and society, and life. It kind of presents an impossible situation when you're demanding something from a system of knowledge, which, ah, you're, ah, well you are refusing the system of knowledge that you are relying on for recognition. So it's kind of like this consciously demanding an answer, but unconsciously not really tolerating it, or not wanting it. So, that also seems to be, ah, something going on.

And yeah, just the quick fixes today, ah, people think that, people just want to get rid of problems quickly, ah, and they do, but there is also that other uncomfortable area where they don't really want to, ah, to a certain extent, you know.

Interviewer:
Yeah, it's serving a purpose. How do you see it tied in to mourning?

Diserholt:
Ahm, so that's a, um, how do I explain that? Um, well I notice like all, pretty much all, of the participants I interviewed, that they had some sort of loss, a death of a loved one or a separation, or ah, you know, something. Um. Well, they lost something kind of at the onset or around the onset of their condition, ah, so I was kind of like, ah, playing around with the possibility that it might be a failure of mourning. Um, where, ah, which would, which would shed light on the contradiction that, you know, trying to ah signal the presence in a way to keep the person alive, but at the same time... Well, I need to explain the concept of mourning in Freudian Lacan, which is, ah, not dealing with a loss, an absence as we would normally think of it. ah, but it's dealing with, yeah, as Freud said, it's not the person that we lost but the ideas related to the person. You know, they come to play a huge role in our identities, but that we don't know what these ideas were, and we don't know what we lost in the other person.

Ah, which then Lacan comes to emphasise that it is a presence we are dealing with, um, the presence of these ideas and, but which are ultimately incomprehensible. So it's a presence of an absence, ah, just the way he is putting it. Ah, so I think that, I just thought that was kind of appropriate and, kind of, that does shed light on that contradiction that, trying to keep the person alive and then trying to get rid of this incomprehensible too muchness tension, ah, because it just doesn't make sense.
 
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She seems like a nice well-meaning young woman. I know we are really careful when using the word 'cult' on this forum, but that was what came to mind as I listened to her - a capturing of the mind with the seductiveness of being part of a group with 'special knowledge' that others do not have.

She's planning a book.

so I was kind of like, ah, playing around with the possibility that it might be a failure of mourning
The thought of her, or, even worse that interviewer, 'playing around with the possibility that it might be a failure of mourning' with a vulnerable patient is really concerning.

If you watch the interview on You Tube, you can like/dislike it.
 
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Me: "Uh, like yeah, I was kind of in a failure of mourning at the onset,and beyond, kind of like uh, with extreme pain and exhaustion, disorientation, unable to speak coherently and having to leave work early. And like losing my f-ing job and fearing/knowing I would never be able to work again, and having no means of support, though I continued to try different types of very part-time work, uh, yeah. Losing a career, yeah, uh, a failure...of mourning.

And uh, like I was kind of in mourning because uh, after onset, some months later, my husband left me because he didn't want a sick wife, so sure, uh..mourning, mmmmm."

She has failed to learn about ME before she designed the shoddy qualitative/philosophical vehicle for her ponderings a la Lacanisme.

So, there is no science base here.

This whole thing has angered me all day.
 
In these psychological narratives, the illness is always something that can be easily overcome. You just have to get over your own fears, face your sadness, release your true desires and so on. The pieces you need to solve the problem are all there, in your mind and just have to be rearranged.

The point of the narrative is apparently not to correctly describe reality because usually no effort is made to ensure it does. The point is to be an inspiring story that gives a sense of control. It's insulation against a cruel reality where bad things happen to good people and sometimes nothing can be done.

In the long term reality denial is harmful. One way it can be harmful: if the dominent narrative of ME becomes that it's not really a serious illness, but a psychological problem that challenges patients to become a better person, one should not be surprised to see little effort put into biomedical research and healthcare.

The irony is also that you also can't really help people psychologically unless you understand their true situation.
 
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The point is to be an inspiring story that gives a sense of control. It's insulation against a cruel reality where sometimes nothing can be done.
Yes, and of course it's mainly the therapist who is insulated from harsh reality, with every naturally occurring recovery bolstering their sense of having the solution. No science required.

The client might get some temporary reassurance that they are facing a problem that can be overcome by working on their psyche and identifying their past traumas. But, if they are unlucky enough not to recover, the despair is deeper, as they know that they failed (and their family and friends know it too). They just didn't want to be well strongly enough, preferring to disappear into 'the hole of nothingness'.
 
I was diagnosed as having a physical disease in 1984 when ME was considered a physical disease and research into it's physical causes was being done.

When all the psychological stuff was being brought in I was totally shocked. As a sort of defence, my family began a kind of game where everyone we came across with a disease we worked out why they needed it at that point in their lives.

It is easy to make up a reason for everything from toothache to the flu. Point is it is you can make up anything but you have to prove it and the BPS side don't do that. They do the opposite and leave out any evidence for a physical causation.

Put simply, if the patient was functioning well one day then long term sick the next was it something physical that changed, something in their circumstances or something psychological?
 
Me: "Uh, like yeah, I was kind of in a failure of mourning at the onset,and beyond, kind of like uh, with extreme pain and exhaustion, disorientation, unable to speak coherently and having to leave work early. And like losing my f-ing job and fearing/knowing I would never be able to work again, and having no means of support, though I continued to try different types of very part-time work, uh, yeah. Losing a career, yeah, uh, a failure...of mourning.

And uh, like I was kind of in mourning because uh, after onset, some months later, my husband left me because he didn't want a sick wife, so sure, uh..mourning, mmmmm."

She has failed to learn about ME before she designed the shoddy qualitative/philosophical vehicle for her ponderings a la Lacanisme.

So, there is no science base here.

This whole thing has angered me all day.
Yes dear Shak8, it is angering, but she's in a web, like a spider's web, called Lacanian analysis. If someone living in Scotland (is this where she is?) has a free moment, it might be useful to send her a few articles about ME (by mail). I am sure the university would forward them to her. Perhaps an organization can do this. This is the best approach with folks who are into this stuff. It might just move her off ME a bit, and she may focus more on "fatigue" in her 'book.' After all, ME is not primarily about fatigue but about exertion intolerance, PEM, etc.. Best wishes.

(PS. When we have medical visits now, we carry around a folder of articles about ME in order to give to physicians, because here in Canada, very little of substance is known about this illness.)
 
That's kind of you @Perrier, and I agree that it's definitely worth trying to educate Ms Diserholt to at least limit the harm that she does. But, she has already spent what she suggests is a great deal of time interviewing at least 9 people with ME/CFS and thinking about what they said to her. Indications are that at least some of the people interviewed said many of the things we would have wanted Ms Diserholt to know, including 'changing thoughts and behaviours doesn't fix ME/CFS', 'ME/CFS is more than fatigue' and 'loss of a loved one does not cause ME/CFS'. It will take a lot of effort to turn around her entrenched beliefs.

Meanwhile, this young woman's supervisor (Associate Professor Calum Neill) continues to turn smart caring young people into graduates with these harmful, blinkered, and unevidenced beliefs. He makes a PhD qualification and this particular university laughable. I think that education needs to be primarily targeted at the administration of the university that allows this.
 
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