Acquiring a new understanding of illness and agency: a narrative study of recovering from chronic fatigue syndrome 2023 Bakken, Strand et al

Background
The condition known as chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) is poorly understood. Simplified medical models tend to neglect the complexity of illness, contributing to a terrain of uncertainty, dilemmas and predicaments. However, despite pessimistic pictures of no cure and poor prognosis, some patients recover.

Purpose
This study’s purpose is to provide insight into people’s experiences of suffering and recovery from very severe CFS/ME and illuminate understanding of how and why changes became possible.

Methods
Fourteen former patients were interviewed about their experiences of returning to health. A narrative analysis was undertaken to explore participants’ experiences and understandings. We present the result through one participant’s story.

Results
The analysis yielded a common plotline with a distinct turning point. Participants went through a profound narrative shift, change in mindset and subsequent long-time work to actively pursue their own healing. Their narrative understandings of being helpless victims of disease were replaced by a more complex view of causality and illness and a new sense of self-agency developed.

Discussion
We discuss the illness narratives in relation to the disease model and its shortcomings, the different voices dominating the stories at different times in a clinically, conceptually, and emotionally challenging area.

Open access, https://www.tandfonline.com/doi/full/10.1080/17482631.2023.2223420

 

Truly effective treatments do not need this kind of marketing because it's easy to demonstrate in credible experiments that they work.

(this kind of marketing refers to all the scientific, newspaper and opinion pieces published over the years, none of which seems to contain an experiment that reliably demonstrates the alleged power of LP)

 

If we don’t understand the condition, how can anyone say there is not a simple ‘medical model’ or say that ‘the complexity of illness’ has any relevance or meaning in this context.

 

I think what the authors and many others are doing is confusing cause and effect.

When we are sick, the body adopts a survival program that is intended to give us the best changes to overcome the illness. We get tired to ensure we don't spend energy on non-essential tasks. We become risk averse and more sensitive to pain and stress to minimize the chances of additional health problems. Interest in participating and building one's life decreases.

When we're no longer sick, the mental state and behaviour begins normalizing. And I think people observe the change in mental state occurring together with the improvement in health and mistakenly believe that a change in mental state made the improvement in health happen.

 

'Erik’s relatives collected personal testimonies from former patients who claimed they had recovered after attending a mental training programme'


'For years afterwards, he tried to avoid conversations about his former illness and contact with patients with CFS/ME, patient organizations and patient advocacy groups because he was afraid his old understanding would be reactivated, triggering symptoms and relapse.'


LP trainees are often encouraged to avoid having contact with other patients/groups who they were previously in contact with before doing Lightning. Like we are contagious.


Yep. A convoluted promotion for Lightning Process.

 

'Acquiring a new understanding of illness and agency: a narrative study of recovering from chronic fatigue syndrome'


'The label CFS/ME may implicitly have promised a narrative understanding resembling that of a well-defined disease within the biomedical paradigm. But since the diagnosis provided neither a sufficient explanation, an effective treatment nor a prediction of the future, participants’ fear and hopelessness persisted.

At any rate, the diagnosis does not seem to fully protect patients from social sanctions of the medically unexplained (Cheshire et al., Citation2020; Fennell et al., Citation2021). On the contrary, there is substantial evidence that many patients with CFS/ME are exposed to negative attitudes, do not feel understood and respected in healthcare encounters as well as more broadly in society and may be particularly susceptible to the phenomena described in the literature as “epistemic injustice” (Blease et al., Citation2017; Froehlich et al., Citation2021).


Sharpe and Greco (Citation2019) address “illness without verified disease” as a paradox in the context of CFS/ME. They argue that society’s tendency to distrust or devalue patients’ experiences may result in one of two possible routes when attempting to escape this paradox. Since both propositions “this is a real illness” and “this is not a disease” cannot be simultaneously true and valid, given the disease model, there will be those who deny the reality of the illness on the one hand and those who believe the illness is a result of a disease that medical science has not yet discovered on the other. To sustain a restitution narrative, participants in this study had to put their trust in future scientific breakthroughs for a cause to be discovered and a cure to be invented, surrendering to the biomedical narrative.'




There are some seriously convoluted and twisty arguments in the paragraphs above. The authors appear to blame 'the disease model' for denial of and disbelief in the disease.

The authors also seem to have shifted the responsibility for 'CFS/ME' being seen as 'not a disease' (with patients' experiences 'distrusted' and 'devalued') onto 'Society'..... whilst quoting Sharpe, as though Sharpe is merely an observer of 'Society's' distrusting and devaluing 'CFS/ME' patients/patients' experience.

 

As is the case in hundreds of other diseases?

These other diseases mostly don't have a psychosomatics lobby group that is constantly trying to cast doubt on the reality of the disease. Maybe that is where the disbelief originates?

 

These people think any chronic illness is the patient's fault. They just don't say it because it's politically incorrect and would really hurt their marketing. The reason they insist on ME so much is because nobody is on our side so we are easy prey, not because they think ME is fundamentally different compared to other chronic illness.

 

Yes! That is a massively important point, Hubris. I think you are absolutely right. The psycho-social industry that has developed around ME strikes me as being both predatory and parasitical.

 

The entire results section is all about one patient named Eric who recovered after what seems to be a 3-day course of the LP. "We have chosen to present the results in this paper through one participant’s story" the authors say.

Not sure what this has to do with science.

 

I saw on Twitter that this research project applied for an exemption of public announcement of the study and its protocol, because the researchers expected criticism from patients. The request was approved. This was information gained via FOI requests, but I can't remember who shared it on Twitter.

 

The premise of this paper is strongly at odds with my experience. In some ways, almost the opposite.

The narrative is that of a patient that is caught up in a harmful medicalization, within a dominant biomedical world view.

I think it would be be accurate to describe my first years as being dominated by confusion, lack of clarity, and psychologization. A biomedical view entered the picture only after many years of fruitless attempts to "overcome myself", which is how one could summarize the psychologization I experienced in its various forms. Whenever these attempts failed (they always did), it increased the pscyhological suffering.

For me a biomedical view of my illness seemed more consistent with what I was experiencing, allowed discussion of some unpleasant facts about prognosis and treatments that had not been mentioned before (perhaps in part to spare me unpleasant emotions).

I can only laugh at the idea of too much biomedicalization because the reality is that there is extreme neglect. It's really something for a person to look at the almost complete absence of medical treatments, diagnostics, training, and general attention given and declare that this is far too much. Maybe things are different in Norway but from what I've seen there are no major differences in the treatment of ME between healthcare systems.

Also the idea that thinking patterns could cause such a severe impairment seems ridiculous to me. It's just not how reality works. To me these ideas (of think-yourself-well approaches and similar) seem more like a fantasy that is embraced to avoid confronting an unpleasant reality. And they are used to exploit patients who are still struggling to understand and accept reality.

ME is perhaps more vulnerable to this due to a combination of factors like being fluctuating, PEM, imprecise diagnostic criteria and a lack of diagnostic tests.

 

They don’t interview patients with stage 4 cancer who claim they have been cured by divine intervention, do they? These patients must have left all their friends behind so they could live free of any negative views and maladaptive patterns.

if you believe hard enough, and if you work at it hard enough, then you will be cured. Bullshit.

If they claim they can cure patients who to this day have no biomarkers for ME, then how about they try with measurable solid tumours and see how the tumours shrink or expand after their own labor intensive psyche intervention?

 

yes it is one of those ‘services with no use and no customers’ which is why they sell indirectly to those around patients by inciting them to push their loved ones or employees into it.

parasitic is the correct term. In the actual health profession I think it’s a weird issue if not wanting to just ban cherry-picking of useless ‘specialisms’ or habits. Let’s be honest many prefer to motivate and manipulate and ‘jolly’ than the hard work of empathy and listening and medical stuff.

no other condition puts up with this crap - which it is - yet it seems over prescribed in people who would rather do that job which I think is why it got dumped in ‘MUs’ and perhaps why ‘MUS’ ie de-investigating’ and bucketing so chronically ill predominantly females so said people have no leg to stand on in saying no to getting stuck with the dept no one wants and shouldn’t exist. Just because no one will do tests. It’s just jobs-creation for those who want to do what they want. But it has no use. And if for them that believing in delusions they’ve talked themselves into so to tell themselves instead of pushing around ill people with domineering techniques to enforce bigotry that it’s ‘a skill’ of ‘help’ only the most powerless get stuck with them. Those who are I think would be right in using the terms victim given the focus on selling to others around them to push them into such damaging things.

I have a real issue regarding vulnerability, influencing and manipulating testimony by playing on the cognitive and energy vulnerabilities of pwme and the power issues isolating techniques etc that these things can only run on.

To me it’s a safeguarding issue showing how methods can be dangerous in manipulating vulnerable people rather than ‘treatment’ when I see this stuff and get shocked at people being proud at what they’ve produced when they haven’t probed any of this (how tired and keen to get home people would be when they are this ill, keen o please and hope for he bes/ge a pat on the head, how horrific and bullying a situation the marketing lies to those around pwme such messages of ‘lack of effort’ cause etc). It’s classic bad (ie damaging) psychology, ethics stuff you’d think such ‘scientists’ would be more fascinated to look into rather than ticking boxes to sign off more if it.

 

Yep I don’t believe any of it, what I do believe is the power of those who rewrite someone’s narrative and feed it back to them. And how such brainwashing shouldn’t be happening without proof it helps not harms given it us being directed at probably the group most vulnerable to it due to power issues exhaustion and survival instinct meaning you’d do and say anything just to get home and stop being hurt by the over exertion of s long session.

I think that is why we are enjoyed so much by certain parasitic personalities and do think there needs to be severe groups that sorts safeguarding and methodological manipulations where long surveys and sessions are used to filter out the illest then browbeat those left who can still speak but can’t think anymore because they’ve been put in s horrific health situation

it should no longer be ok that those with ME can be forced into being talked at for more than 29mins never mind sessions that last hours, and prevented from going home when they are over exerted - or made to sign or say something in order to be allowed to fk do - it’s s horrific safety issue that borders in abuse if power when you think what us now known about those who are over threshold and how much pain snd vulnerability it leaves you in.

a researcher wouldn’t/shouldn’t get away with making someone with autism sit with s loud hoover running for an hour then only allowed to leave if they complete a survey claiming they’ve been cured, or someone physically weak and frail elderly being told they can’t have a chair until these even though they’ve been near-collapse snd yet that’s kind of similar stuff. It seems so transparent to me.

 

Did I just timetravel? (I just read almost exactly this yesterday, from the late 80s/early 90s.) I know his argument well, from the top of my head versions of it were made by some psychiatrists in the first quarter of the 20th century, some psychiatrists with psychosomatic beliefs in the 70s, and of course in the early stages of the psychiatric hyjack of ME/CFS.

The argument is invariably made by a disableist psychiatrist who is convinced of the genius of their view that (bad) cognitions/behaviour/personality are of major influence on physical illness and that psychiatry has a prominent role to play in making and keeping people physically and psychologically healthy but medical doctors are just too simplistic and close-minded when they ignore that/don't accept this.

It's basic disableism seen as a professional insight, arrogant superiority views, and wanting more prominence for their own profession, but I've seen cases where it was unmistakenly about frustrated anger at not being seen as equal to medical doctors and "hitting back" this way.

The sentence above is dressed up in pretty language, but what it says is that giving a medical explanation to illness is "simplistic" (immune systems and metablism are known for that no?) in contrast to the "complexity" of considering and treating the illness psychosomatically (adding fluff is called looking at "complexity"), and this so-called simplistic medical view prevents patients getting well and knowledge expanding, so you should you allow in the bps movement/LP proponents and consider it psychosomatically, looking at patient's "stories". Like so:

This is such vile stuff.

Did you see this?:

Biomedicine doesn't say that, and using this trickster argument is a won-out bps/psychosomatic trope. They'll say it's not psychogenic, so it didn't start as a psychological/psychiatric thing, but it is what is perpetuating the illness according to their beliefs.

Same Shit, Different Day (SSDD)

 

Ah, sorry. Same Shit, Different Day.

Will edit.