Article: Recovering from chronic fatigue syndrome as an intra-active process, 2019, Synne Groven and Dahl-Michelson

Andy

Andy

Retired committee member
In this article, we draw on the narrative of a woman who has recovered from chronic fatigue syndrome (CFS) to explore the process of recovering from a debilitating illness. Inspired by Julia Kristeva’s notion of the body as a complex biocultural fact and by Karen Barad’s posthuman theory (also termed agential realism), we adopt an intra-active approach to the woman’s recovery process, revealing the role played by human as well as nonhuman entities. In so doing, we move beyond “dualistic,” often polarized debates in the medical literature (and mainstream media) regarding the causes of CFS: debates in which “biological/physiological” factors tend to be set against “mental/cognitive/psychological” ones. We argue for a medical perspective in which the intra-action of human and nonhuman agents is recognized as contributing to an individual’s recovery process.
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Paywall, https://www.tandfonline.com/doi/full/10.1080/07399332.2019.1663195
Sci hub, https://sci-hub.se/10.1080/07399332.2019.1663195
 
from Oslo.. oh dear..
I've only skimmed this but :banghead::banghead::banghead:

Here's from the patient's story in her own words (from the sci-hub-link)

I got in contact with the CFS organization through the internet, but I soon learned how they “protected” their disease. They turned down every suggestion I made about things that might help me, because according to them there was only one thing that helped and that was rest. So I decided to break off contact with them because I thought, “This is not good for my mental health.”

...

But when I got home that day, after the acupuncture, I had to go straight to the toilet. I understood that something had happened to my body after that acupuncture appointment. And then I started on the herbal medicine. It was strictly organized and I had to follow a certain order, so I had a timetable which enabled me to organize what to take and when.

Then more things started to happen in my body. There was a change in my energy level. I did not see it so clearly myself, it was my family who saw that after I’d been for treatment I could do things I couldn’t before. The infections I’d suffered became less frequent, the pain in my muscles and my stomach problems also eased... I could do more things. I could do more and more. Still, I did not feel completely recovered. And I was deeply afraid of becoming very ill again.

So then, after hearing stories from people who had recovered after participating in Lightening Therapy, I decided to give it a go.

....

During the program, the therapists explained that when I got the BCG vaccine, on top of having glandular fever, and later had a flu vaccine, my body had begun stressing out. It got into survivor mode, producing adrenaline to fight back – and that adrenaline production has never ceased.

So every time I had thought “I’d like to go hiking in the mountains but it always makes me so unwell,” my adrenal glands had received a signal from the brain saying “ok, here we need to produce more (adrenaline), so the body never got a chance to rest”

The therapists [in the Lightening Program] explained how my body was in survival mode, and that I could end this myself. I had to stop it through my thinking; I had to change my thinking. I needed to think “There’s no reason why I and my body should be so afraid.”

So, I had to learn this way of thinking, of being aware what I was thinking. For example, although I wasn’t negative about going hiking in the mountains, my body reacted against it at once.

It was like, for example, being in a room where a projector was making a racket. Please switch it off: that noise is giving me a terrible headache. So, it’s like STOP. Now you must THINK, [get to your feet and trace a circle on the floor in front of you]. Every time I started to feel afraid or think in terms of my own sickness, I told myself to STOP.

To start off with, I went (physically) out of the situation and said “stop.” But after a while I put this into my own language. I told myself: “I am not going back to CFS; I am going to have a life that I love.” Then I’d remember how it was to be completely healthy and, well, you go into that situation, imagining how it is, the feeling [in your body], the smell ... . And then that bad feeling, and the fear of failing to recover, just seemed to melt away. I stopped that train of thought, and I no longer needed to walk in a circle... It sounds silly, it sounds so simple, but I did this the whole time ...

Then there was a sudden change, and it was very strange. After that, I was healthy and well ... I think it was the combination of LP and alternative medicine, including two years of acupuncture and herbal medicine. I got rid of all the misery that was part of my body. But I still needed to strengthen my body and muscles ... So now I focus on keeping it going.

But if I get the flu I get a bit panicky, because flu has many of the same symptoms [as CFS] and I become very frightened about getting ill again, of being reclaimed by ME. So, I use the techniques I learned in LP. I say “stop.”
 
Kalliope said:
from Oslo.. oh dear..
I've only skimmed this but :banghead::banghead::banghead:

Here's from the patient's story in her own words (from the sci-hub-link)

I got in contact with the CFS organization through the internet, but I soon learned how they “protected” their disease. They turned down every suggestion I made about things that might help me, because according to them there was only one thing that helped and that was rest. So I decided to break off contact with them because I thought, “This is not good for my mental health.”

...

But when I got home that day, after the acupuncture, I had to go straight to the toilet. I understood that something had happened to my body after that acupuncture appointment. And then I started on the herbal medicine. It was strictly organized and I had to follow a certain order, so I had a timetable which enabled me to organize what to take and when.

Then more things started to happen in my body. There was a change in my energy level. I did not see it so clearly myself, it was my family who saw that after I’d been for treatment I could do things I couldn’t before. The infections I’d suffered became less frequent, the pain in my muscles and my stomach problems also eased... I could do more things. I could do more and more. Still, I did not feel completely recovered. And I was deeply afraid of becoming very ill again.

So then, after hearing stories from people who had recovered after participating in Lightening Therapy, I decided to give it a go.

....

During the program, the therapists explained that when I got the BCG vaccine, on top of having glandular fever, and later had a flu vaccine, my body had begun stressing out. It got into survivor mode, producing adrenaline to fight back – and that adrenaline production has never ceased.

So every time I had thought “I’d like to go hiking in the mountains but it always makes me so unwell,” my adrenal glands had received a signal from the brain saying “ok, here we need to produce more (adrenaline), so the body never got a chance to rest”

The therapists [in the Lightening Program] explained how my body was in survival mode, and that I could end this myself. I had to stop it through my thinking; I had to change my thinking. I needed to think “There’s no reason why I and my body should be so afraid.”

So, I had to learn this way of thinking, of being aware what I was thinking. For example, although I wasn’t negative about going hiking in the mountains, my body reacted against it at once.

It was like, for example, being in a room where a projector was making a racket. Please switch it off: that noise is giving me a terrible headache. So, it’s like STOP. Now you must THINK, [get to your feet and trace a circle on the floor in front of you]. Every time I started to feel afraid or think in terms of my own sickness, I told myself to STOP.

To start off with, I went (physically) out of the situation and said “stop.” But after a while I put this into my own language. I told myself: “I am not going back to CFS; I am going to have a life that I love.” Then I’d remember how it was to be completely healthy and, well, you go into that situation, imagining how it is, the feeling [in your body], the smell ... . And then that bad feeling, and the fear of failing to recover, just seemed to melt away. I stopped that train of thought, and I no longer needed to walk in a circle... It sounds silly, it sounds so simple, but I did this the whole time ...

Then there was a sudden change, and it was very strange. After that, I was healthy and well ... I think it was the combination of LP and alternative medicine, including two years of acupuncture and herbal medicine. I got rid of all the misery that was part of my body. But I still needed to strengthen my body and muscles ... So now I focus on keeping it going.

But if I get the flu I get a bit panicky, because flu has many of the same symptoms [as CFS] and I become very frightened about getting ill again, of being reclaimed by ME. So, I use the techniques I learned in LP. I say “stop.”
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I know we shouldn't say this, but this sounds so different to my experiences. She's getting ill at the very thought of hiking--that's worry, in my mind. It's not the thought of doing things that makes me ill.
 
adambeyoncelowe said:
I know we shouldn't say this, but this sounds so different to my experiences. She's getting ill at the very thought of hiking--that's worry, in my mind. It's not the thought of doing things that makes me ill.
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And it seems she was already improving anyway when she started with LP.

But none of that matters, I guess.

This article is another addition about Lightning Process (TM) in the academic literature, providing an aura of credibility and will for sure be enthusiastically used in further marketing :arghh:
 
Why on earth do anecdotes like this get published in journals?

Writing a abstract that is full of nonsensical jargon shouldn't make it academically respectable.

This sentence looks like it was written as a joke:

Inspired by Julia Kristeva’s notion of the body as a complex biocultural fact and by Karen Barad’s posthuman theory (also termed agential realism), we adopt an intra-active approach to the woman’s recovery process, revealing the role played by human as well as nonhuman entities.
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Do people really get paid academic salaries for this?
 
Trish said:
Why on earth do anecdotes like this get published in journals?

Writing a abstract that is full of nonsensical jargon shouldn't make it academically respectable.

This sentence looks like it was written as a joke:



Do people really get paid academic salaries for this?
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this stuff is all the rage in humanities departments. they call it ethnographic research or something. it's an absolute travesty that millions is being spent on stuff like this. follow New Real Peer Review on Twitter to see them call out this crap. you can literally get a phd now by writing a thesis that is basically just your life story - apparently that's called autoethnography. a bit of postmodernist gobbledygook also helps.
 
This woman's story actually appears to follow a very similar time frame to my first bout and there is overlap of some of our experiences. I went for acupuncture at the insistence of my family but other than having a nice lie down I experienced nothing.

I then gradually improved over the next 2 years to a point where I also experienced 'a sudden change' and from that point on was able to lead a life similar to before my illness.

I attribute my recovery to waiting to get better and not forcing myself to do things I knew I wasn't capable of. But I guess there's not enough nonsense words and internal reflection for it to be considered a valid story!
 
adambeyoncelowe said:
I know we shouldn't say this, but this sounds so different to my experiences. She's getting ill at the very thought of hiking--that's worry, in my mind. It's not the thought of doing things that makes me ill.
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This could be a very big clue indeed. This person might be someone who's problems really did stem from their own unhelpful beliefs. It's a non-trivial possibility I think, that there really are some people with this mode of illness, yet with symptoms approximating to those of real ME. This could be one of the really tricky issues where an illness can only be diagnosed by symptoms, and by subjective questioning of illness progression etc.
 
Barry said:
This could be a very big clue indeed. This person might be someone who's problems really did stem from their own unhelpful beliefs. It's a non-trivial possibility I think, that there really are some people with this mode of illness, yet with symptoms approximating to those of real ME. This could be one of the really tricky issues where an illness can only be diagnosed by symptoms, and by subjective questioning of illness progression etc.
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Everything just feels so different in her description compared to what I experience, I think. Her explanation of adrenaline doesn't sound right either. I rarely get adrenaline surges, and when I do they mask my symptoms temporarily.

It's not the adrenaline that makes me ill but how it distorts my awareness of my energy envelope. In fact, sometimes I wish I had more adrenaline to overcome the crushing fatigue.

I don't want to poo-poo her diagnosis. That's her experience, not mine. But it's clear to me why that would never work for me.
 
Barry said:
I was not poo-pooing her condition, as for every person it is very real and deeply life-impacting. Though I am raising the doubt whether receiving the same diagnosis necessarily maps to having the same condition.
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Sorry, I wasn't implying you were. I just wanted to make it clear that in pointing out how her experience is not mine, I'm not trying to say 'that's not real ME'.
 
"I rarely get adrenaline surges, and when I do they mask my symptoms temporarily." It's the same with me.

She doesn't say that she was feeling more ill at the thought of hiking:
"So every time I had thought “I’d like to go hiking in the mountains but it always makes me so unwell,” my adrenal glands had received a signal from the brain saying “ok, here we need to produce more (adrenaline), so the body never got a chance to rest”"

Sounds more like she has adopted the LP nonsense to explain her illness and recovery which could well be a natural/ spontaneous recovery (or remission) from ME/CFS or Post Viral Fatigue.
 
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lycaena said:
"I rarely get adrenaline surges, and when I do they mask my symptoms temporarily." It's the same with me.

She doesn't say that she was feeling more ill at the thought of hiking:
"So every time I had thought “I’d like to go hiking in the mountains but it always makes me so unwell,” my adrenal glands had received a signal from the brain saying “ok, here we need to produce more (adrenaline), so the body never got a chance to rest”"

Sounds more like she has adopted the LP nonsense to explain her illness and recovery which could well be a natural/ spontaneous recovery (or remission) from ME/CFS or Post Viral Fatigue.
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You're possibly right. The wording is ambiguous:
So every time I had thought “I’d like to go hiking in the mountains but it always makes me so unwell,” my adrenal glands had received a signal from the brain saying “ok, here we need to produce more (adrenaline), so the body never got a chance to rest”

The therapists [in the Lightening Program] explained how my body was in survival mode, and that I could end this myself. I had to stop it through my thinking; I had to change my thinking. I needed to think “There’s no reason why I and my body should be so afraid.”

So, I had to learn this way of thinking, of being aware what I was thinking. For example, although I wasn’t negative about going hiking in the mountains, my body reacted against it at once.
Click to expand...
That reads to me that she wasn't conscious about her thinking, but that it was those unconscious thoughts, or fears, or signals from her brain which caused adrenaline which caused her symptoms.

There's implicit linking in her description between cognition/fears and adrenaline, which were the apparent source of her illness.
 
Kalliope said:
from Oslo.. oh dear..
I've only skimmed this but :banghead::banghead::banghead:

Here's from the patient's story in her own words (from the sci-hub-link)

I got in contact with the CFS organization through the internet, but I soon learned how they “protected” their disease. They turned down every suggestion I made about things that might help me, because according to them there was only one thing that helped and that was rest. So I decided to break off contact with them because I thought, “This is not good for my mental health.”

...

But when I got home that day, after the acupuncture, I had to go straight to the toilet. I understood that something had happened to my body after that acupuncture appointment. And then I started on the herbal medicine. It was strictly organized and I had to follow a certain order, so I had a timetable which enabled me to organize what to take and when.

Then more things started to happen in my body. There was a change in my energy level. I did not see it so clearly myself, it was my family who saw that after I’d been for treatment I could do things I couldn’t before. The infections I’d suffered became less frequent, the pain in my muscles and my stomach problems also eased... I could do more things. I could do more and more. Still, I did not feel completely recovered. And I was deeply afraid of becoming very ill again.

So then, after hearing stories from people who had recovered after participating in Lightening Therapy, I decided to give it a go.

....

During the program, the therapists explained that when I got the BCG vaccine, on top of having glandular fever, and later had a flu vaccine, my body had begun stressing out. It got into survivor mode, producing adrenaline to fight back – and that adrenaline production has never ceased.

So every time I had thought “I’d like to go hiking in the mountains but it always makes me so unwell,” my adrenal glands had received a signal from the brain saying “ok, here we need to produce more (adrenaline), so the body never got a chance to rest”

The therapists [in the Lightening Program] explained how my body was in survival mode, and that I could end this myself. I had to stop it through my thinking; I had to change my thinking. I needed to think “There’s no reason why I and my body should be so afraid.”

So, I had to learn this way of thinking, of being aware what I was thinking. For example, although I wasn’t negative about going hiking in the mountains, my body reacted against it at once.

It was like, for example, being in a room where a projector was making a racket. Please switch it off: that noise is giving me a terrible headache. So, it’s like STOP. Now you must THINK, [get to your feet and trace a circle on the floor in front of you]. Every time I started to feel afraid or think in terms of my own sickness, I told myself to STOP.

To start off with, I went (physically) out of the situation and said “stop.” But after a while I put this into my own language. I told myself: “I am not going back to CFS; I am going to have a life that I love.” Then I’d remember how it was to be completely healthy and, well, you go into that situation, imagining how it is, the feeling [in your body], the smell ... . And then that bad feeling, and the fear of failing to recover, just seemed to melt away. I stopped that train of thought, and I no longer needed to walk in a circle... It sounds silly, it sounds so simple, but I did this the whole time ...

Then there was a sudden change, and it was very strange. After that, I was healthy and well ... I think it was the combination of LP and alternative medicine, including two years of acupuncture and herbal medicine. I got rid of all the misery that was part of my body. But I still needed to strengthen my body and muscles ... So now I focus on keeping it going.

But if I get the flu I get a bit panicky, because flu has many of the same symptoms [as CFS] and I become very frightened about getting ill again, of being reclaimed by ME. So, I use the techniques I learned in LP. I say “stop.”
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OK this is straight up embarrassing to read. This does not belong in a medical journal. There is woo out there that is written satirically and is less embarrassing than this.
 
adambeyoncelowe said:
I know we shouldn't say this, but this sounds so different to my experiences. She's getting ill at the very thought of hiking--that's worry, in my mind. It's not the thought of doing things that makes me ill.
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My experience of illness has characteristically been perfectly associated with poverty of thought, my mind has been mostly blank since then and in direct relation to how sick I am. Which is extremely at odds with my normal self. I have no running internal dialogue anymore, every thought needs to be strained through, pushing back against the dullness of cognitive molasses, exactly how it is when I'd get the flu, food poisoning or whatever.

The thought of hiking? Holy crap that sounds amazing. I used to love that. It makes me feel all warm and fuzzy inside simply thinking about it, or anything physically demanding, even stuff like high-intensity training, I love that. The thought of doing anything, really, is one of the things that keeps me going. At least I have those memories and the hope that I will be able to again.

This account sounds a lot like actual severe anxiety. This I can't relate to at all.
 
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Forbin said:
Just who are these "nonhuman agents," and what kind of commission do they get when they sell your house?
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This got me curious and holy crap is this peak pseudo-intellectual argle-bargle. This was clearly written by someone who has never been challenged on any of their ideas and beliefs and think they are too smart to ever be wrong.

I see a reference to the agency of the LP. So we are firmly into leprechauns and fairies territory here. The LP acts as an agent on the subject's own agency, which is driven by fear.

I wonder if Parker got his ideas from Donnie Darko.

56cbfd4c6cad20b1d2e1c8d263ee3716.jpg
 
adambeyoncelowe said:
It's not the adrenaline that makes me ill but how it distorts my awareness of my energy envelope. In fact, sometimes I wish I had more adrenaline to overcome the crushing fatigue.
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This.

My first thought whenever I read about all this 'adrenaline is the cause' gumph, is 'No it isn't. I feel orders of magnitude better during a fight or flight response, it's when I'm calm I feel at my worst'.
 
The article appeared in the journal "Health Care for Women International," which had a 2018 "impact factor" of 0.788.

https://www.tandfonline.com/toc/uhcw20/current

Inspired by Julia Kristeva’s notion of the body as a complex biocultural fact and by Karen Barad’s posthuman theory (also termed agential realism), we adopt an intra-active approach to the woman’s recovery process, revealing the role played by human as well as nonhuman entities.
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Anyone want to take up the challenge of summarizing the Wikipedia page on agential realism?
 
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