Using Communities of Practice Theory to Understand the Crisis of Identity in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME), 2021, Murray

[Andy]

Abstract
Objective
To explore the crisis of identity in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) through the lens of Communities of Practice.

Methods
A closed Facebook group was created to gather qualitative data from participants diagnosed with CFS/ME (n = 22). Data were analysed using a theoretical thematic analysis.

Results
The current research revealed the reality of enabling and disabling communities in the lived experience of CFS/ME and the role of participation in developing empowered identities. Learning how to be alongside CFS/ME aligned with participants’ experiences of purpose and meaning. New identities may be developed which are not centrally defined by loss or stigma.

Discussion
Participation in supportive communities enables CFS/ME identities to emerge as a platform for positive change. Engaging with the CFS/ME virtual community may be a way for both families and health professionals to reflect on current practice.

Open access, https://journals.sagepub.com/doi/10.1177/17423953211064989

 

[Jonathan Edwards]

We bin there done that?

 

[Andy]

We bin there done that?

You and very few others may have but there are a lot of 'experts' who would benefit massively from following your lead.

Also papers like this would seem to counter the 'online patient groups are bad' meme, which is useful as well.

 

[Trish]

For us, the findings and conclusions are not surprising, but I think it's a worthwhile piece of research in informing the ill informed.

 

[Arvo]

I only read the first part when I came to such a whopper of an unruth that it shows clearly to me that the authors did not do their research, harming patients in the process. (Not sure if I should waste time on the rest because of that.)

The lack of biomedical evidence caused much controversy in the 1980's which resulted in a reclassification. Chronic Fatigue Syndrome (CFS) was constructed in an attempt to enable scientific research into ME, but in so doing obliterated fundamental features of ME.7,8 CFS has since been classified by the WHO (ICD-10) in Chapter V ‘Mental and Behavioural Disorders’ under 48.0 ‘Other Neurotic Disorders’.6

It might be well-meaning, but I think making such utterly uninformed claims about ME makes the whole article more harm than good if you are giving the impression that CFS was redirected towards the mental health section by the WHO.


I also don't like the title. I understand what they mean I think, but it reads like a "crisis of identity" is part of the illness. Like it's a psychiatric component of it.

 

[Jonathan Edwards]

For us, the findings and conclusions are not surprising, but I think it's a worthwhile piece of research in informing the ill informed.

But as @Arvo says, it might be misinforming the uninformed.
It seems to focus on the division between ME and CFS and brings in a lot of pseudophilosophical and sociological jargon.

 

[Arvo]

Can they add an addendum or edit the text after publication?

If so, I might contact the authors to point out the gross mistake. (If I think it's worth it after reading the rest of the aricle.)

 

[rvallee]

To explore the crisis of identity in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

The what now? Buddy, we're not the ones having trouble identifying things. Or having trouble with identity, I think the people harping about mind-body duality and the relationship BETWEEN the mind and the body are far more troubled in their identity than we have ever been. I doubt this is what is meant by crisis of identity, but then why use the exact term that means exactly this. Pfft.

Chronic Fatigue Syndrome (CFS) was constructed in an attempt to enable scientific research into ME

Oh boy, literally the opposite. Much confusion here. It was invented explicitly to bury us in the deepest pit on Earth.

 

[Trish]

OK, so they got some of the history of the use of the names wrong, and I agree that's important, but I thought the parts of it about how individuals with ME are faced with so many losses of role, social group, medical understanding etc, and the important role online groups play in many pwME's lives was all OK.

 

[CRG]

IMO Sociology lost its way after the passing of Max Weber - a mere 101 years ago, this article doesn't persuade me my opinion is wrong. Perhaps I missed it but I couldn't detect a single test of assumption anywhere, it's polemic not investigation. I need to go listen to some death metal to clear out the honeyed verbiage.

And it should mandatory for anyone using the word 'theory' in socio and psych contexts to state that 'this does not meet a Popperian scientific standard.

2nd author bio here: https://pure.hud.ac.uk/en/persons/lynda-turner

 

[Arvo]

I'm halfway, but it's not an easy read. The language is so woolly I could almost knit a sweater out of it.

So far some mention of a worthy topic (basically: building a sense of who you are and self-worth while being ill doesn't work like how it is for other people, and it's more difficult when your illness is stigmatised, contact with fellow patients helps) wrapped in a whole lotta bad framing that follows BPS narrative and is even self-contradictory at one point.


I'm diving back in...

 

[Arvo]

It got a bit better as it got to the actual topic, but then my initial observation still stands. It also has quite a lot of problematic language (mostly due to following a psychiatry narrative).

I would not recommend this paper to anyone, nor use it as a reference, unless it was while discussing how much the psychiatric narrative has unwittingly invaded the ME community. Despite a couple of good remarks about the topic, (and a topic that is incredibly important to discuss and find solutions too) I think the bad overshadows the good too much. Which is a pity and a missed chance.

BPS narrative, next to the whopper I already mentioned, includes:

Using the Oxford criteria and Fukuda. No PEM
Using CFS/ME

"As biomedical evidence remains elusive.. "

No. Not true in 1989/1990, not true anno 2021.

"...psychosomatic CFS" "

"The illegitimate and psychosomatic nature of the illness appear to be..."

No. CFS has elaborately been framed as psychosomatic, but it was never classified nor criteria-d as psychosomatic.




Then there's a bunch of problematic stuff, like

"The illegitimate and psychosomatic nature of the illness appear to be reified in medical communities, meaning participants were not privileged with a sick identity which compromised their potential to ‘be’ alongside CFS/ME. Participating in CFS/ME may not appear to be a useful form of participation, however, participating in an illness has the potential to enable a new identity to emerge, a sick identity which can legitimise an illness experience and engender the acceptance and support of others. "

I'm on the fence of the continuous use of the term "sick identity" as this can so freaksihly easily be weaponised in the existing context ME patients are currently living in, it can just seamlessly move into the dominant psychiatric narrative. I understand what they mean, but it also seems a bit tone deaf.

Then there's the "privileged with" when "allowed" would have done fine without invoking illness behaviour associations.

And "participating in" CFS/ME. It's not a choice or a hobby ffs, no-one "participates in an illness". (You can't RSVP it and say that regrettably you are unable to attend the little spasm attack soirée or fever fondue planned for this evening.) This is not how this works.

Later on they have a whole bit about how patients find a new way of living through patient contact and sharing, and while that has value, they neglect to point out that crocheting and writing poetry is all well and good, but that such activities are also born out of necessity. (And that patients also find these survival avenues by themselves without community contact.) They say:

We suggest that adaption and re-engagement in new roles and communities demonstrates the power of renegotiating the stigmatised identity. New identities may be developed which are not centrally defined by loss or stigma.

and don't mention with it that these lives are still heavily influenced and harmed by loss and stigma.
They're trying to say something good actually, but here they step into toxic positivity territory IMO.

Also about the CoP:

It may also afford a means of professional reflection on taken for granted ways of being without blaming individual practitioners.

ME patients can ask for accountability and previously absent support while being aware that that's uncomfortable for doctors to do, and have patience with it when the individual practitioner is genuinly trying.. It is however not their problem to make practitioners not feel bad about being accountable.

There's some more bits & bobs, but hopefully you get my point.


Here's the conclusion (as that was good).

Conclusion
The application of CoP provided a framework within which to better consider and understand the issues of identity which are often central to the lived experience of chronic illness. Wenger's participation concept underpinned both the grief for a life and self lost in CFS/ME, and participants’ attempt to renegotiate their jeopardised identities.25 The application of CoP foregrounded the reality of enabling and disabling communities in CFS/ME. The history of CFS/ME was apparent in the scepticism underpinning the lived experience of the illness for participants and their compromised opportunities to participate. The virtual world became an enabling community which allowed participation to resist stigma and offered ways for them to renegotiate their CFS/ME identities.

Participation in virtual communities may also provide an opportunity for the medical profession(s) to reconsider CFS/ME and contribute towards a shift in the social construction of CFS/ME. As is reflected in the current analysis, the literature argues a central tenet of group participation programmes is the mutual support they offer.33–35 This could also be a useful tool in broadening understanding and facilitating a change in practices. For example, group participation programmes involving family members or primary care workers could create a platform for positive change. The CFS/ME community may understandably be dubious of ‘outsiders’ such as health professionals being allowed in, however a commitment such as this could generate understanding in both insiders and outsiders. The importance of supportive communities should not be underestimated when people are struggling to find a new way to be in the world.

 

[Jonathan Edwards]

I agree again. To me this is parasitic do-gooding sociology masquerading as being helpful.

This bit:

participating in an illness has the potential to enable a new identity to emerge, a sick identity which can legitimise an illness experience and engender the acceptance and support of others.

Is exactly the argument my BPS colleagues use to run PWME down. They 'take on the sick role'.
This is the BPS conjuring trick of being all things to all patients translated into voyeur mode in my view.

And the reification bit is the ultimate irony. Reification is to make real.
What is needed is to stop talking about reification and get real.

 

[Trish]

OK, you've persuaded me. It's not OK. I think I skimmed it to look for good bits and ignored the waffle, assuming it had to wrap it in jargon to get published. I think my expectations of social science research are so low, I was pleased to see any good stuff in it at all.

 

[Arvo]

To me this is parasitic do-gooding sociology masquerading as being helpful.

Perhaps. This happens a lot but in this case I'm not completely sure. I think the authors could have used a friend with a good grasp on ME history and -narrative who would have told them what's what, and a couple of others who helped them clean up the awful language they used. The person who wrote it seems to have trouble with language. See the sentence:

"The research design endeavoured to enable the voices of participants and in so doing enable their ‘truthful’ CFS/ME and identity stories to emerge longitudinally. This decision was driven by my knowledge of the CFS/ME community and their need for ‘time’. "

What she means is that patients can't get things done in a hurry, they need time to piece together their stories with the limited energy/ability they have, but it puzzled me at first.
In a way she talks like I do when I start out trying to give words to more abstract observations about the nature of being. Which is fine, you have to start somewhere, but when you want to write about them, you have to make sure that you're not using language that is unclear or can be taken as meaning something else then you intend.


Actually the sick role as a neutral sociologic term is fine. (Maybe it's time to reclaim it?) If you look at society as a complex web of interactions and positions, people who are ill have a "sick role" within society. (Just one of many possible roles.) They are more dependent on their surroundings and society, and need assistance from it. In general, with illnesses that are not stigmatized, humans as a society and individuals accept that people who are ill do not work (or work less) and need and deserve help that we would normally not give as an effort to healthy people. Like bringing soup, making meals or doing groceries. (Example: if I were healthy and able, my partner would normally not be ok with him doing the cooking every day and me doing nothing but eating it, but because he understands I can't do it, he does it without getting irritated that I don't take turns.)

The problem is it has been heavily weaponized. Like a "sick role", a role you play, an act, something you "do" (how you behave) because it benefits you at the burdening of others. It says so much about the people who wrote and still write like that (I think the psychiatric field is riddled with narcissists and sociopaths, and they do tick like that, althoigh nowadays a lot of people who write so have just been taught this.) The texts I have about it from the 80s are highly disableist. Part of the notion is not just that patients like to be treated like babies and get benefits from being coddled, but that illness is always less severe than the patient says it is because they aim for this attention/treatment.

So the language is problematic in the specific context of ME and what it became to mean due to disableist distorting of the word.

And "sick identity" is too close to "sick role" and being explained as "they are ill because they think they have a physical illness called ME". Which is a pity, as what the paper seems to try to be about with this term is finding a sense of self and self worth, about learning what other people with accepted chronic illnesses do (and are allowed to do), to be a [Illness]-patient and trying to build a life with that as best you can when so much of what usually builds an identity (job, parenthood etc.) is inaccessible.



I think what this paper needs most is a good and thorough cleaning up to let a couple of pearls inside shine, but maybe I'm too generous.

 

[alktipping]

This may seem a strange question but just how many people spend time navel gazing about their so called role in life . I have never felt the need to tick boxes that are presented by others as some sort of role that i must participate in . As far as i am concerned my existence is merely a random event in a vast universe filled with random events . To put it simply i do not need or want to create some kind of superficial reason for my being or for some people to place me firmly into one of their artificial constructs .

 

[Trish]

I think we are more likely to think about our role in life when we lose it. Not being able to continue my career, not being able to fulfil some of my parenting role, not being able to help out and support friends as I would like to, not being able to have a role of any sort in my local community, etc etc. Yes, I have grieved for those losses.

 

[Arvo]

It's a sociological way to look at societies and make sense of them, not a term used for an individual about themselves. It's not about putting people in boxes, but about understanding dynamics from both a human and a societal perspective, and the effects of them. And in that the paper has a (deeply buried) good point that it gets in the way of ME patients that they are not allowed to be an ill person, and to get all the attitude and support that comes from society (that they're dependent on) when the illness is a non-stigmatized one.

I personally have thought a lot about my position within society, how that is dependent on collective notions, and what it means to build a life without having access to a lot of the things people usually build their life out of. (When you're severely ill you need to build a whole new set of working-with-what-you've-got-left skills that are not necessarily aligned with your personality and personal inclinations.) And the role stigmatisation plays in how I am treated, which has a significant impact on how well I can build that life with its large existing limitations.


The problem is people get it wrong a lot (especially when they talk about others without spending much time really observing or listening to them), or they are too absolute.


After a night's sleep I am thinking I may have been too generous yesterday about the paper.

I find it a red flag that the author says she has had "CFS/ME" but then calls it having a "psychosomatic nature".

And that she spent a lot of time with 22 "CFS/ME" patients and still got it so excessively wrong about its background, up to the point of even claiming that CFS has been classified as a neurotic disorder by the WHO. (Completed with a reference that doesn't show the validity of her claim, just some vague WHO document on "quality of life" that has nothing to do with the ICD coding.).

 

[CRG]

This may seem a strange question but just how many people spend time navel gazing about their so called role in life . I have never felt the need to tick boxes that are presented by others as some sort of role that i must participate in . As far as i am concerned my existence is merely a random event in a vast universe filled with random events . To put it simply i do not need or want to create some kind of superficial reason for my being or for some people to place me firmly into one of their artificial constructs .

I don't think it strange question at all. There's a major disconnect in much of Sociology where supposed real interactions with actual people are stripped of character in the service of validation of 'theory'. In this paper we are given a glimpse of a few real voices, though edited to fit the author's purpose where they sound weird and stilted.

It's doubly odd because the 'theory' that's being promoted in this paper is, as originally proposed seemingly concerned with the opposite of navel gazing, it defines social interactions in terms of active processes such that learning is dynamic, and where reflection seems secondary and even unnecessary. One could take a group of the most un-selfreflective humans, who as long as they had a common interest, a wish to develop related skills and a basic level of communication could easily fulfill all the descriptions of the theory.

 

[Snowdrop]

From my POV one of the problems of sociological discourse is that it is too self-contained.
It (and possibly this paper) would benefit from some common sense grounding via understanding the history of the illness.

And of course actually actively listening to PwME without their preconceived notions forcing what they hear into a narrative they find satisfying.

It's old news here but for anyone who comes here new to this there is a lot of historical info here:

https://www.margaretwilliams.me/

No doubt discussed in other threads here about.

ETA: there are threads on the margaret williams pages on the WHO classification history of ME/cfs.

Second Edit to separate ME/cfs to ME and cfs (two different classifications)