Towards evidence-based and inclusive models of peer support for long covid: A hermeneutic systematic review 2023 Mullard, Greenhalgh et al

[Andy]

Highlights

• Co-produced peer support can help people living with Long COVID.
• Increasing the use of effective peer support may reduce health inequalities.
• Inclusive peer support can benefit ‘hardly reached’ Long Covid cohorts.
• Linking biomedical, relational and socio-political styles are most effective.

Abstract

Since the first wave of COVID-19 in March 2020 the number of people living with post-COVID syndrome has risen rapidly at global pace, however, questions still remain as to whether there is a hidden cohort of sufferers not accessing mainstream clinics. This group are likely to be constituted by already marginalised people at the sharp end of existing health inequalities and not accessing formal clinics. The challenge of supporting such patients includes the question of how best to organise and facilitate different forms of support. As such, we aim to examine whether peer support is a potential option for hidden or hardly reached populations of long COVID sufferers with a specific focus on the UK, though not exclusively.

Through a systematic hermeneutic literature review of peer support in other conditions (57 papers), we evaluate the global potential of peer support for the ongoing needs of people living with long COVID. Through our analysis, we highlight three key peer support perspectives in healthcare reflecting particular theoretical perspectives, goals, and understandings of what is ‘good health’, we call these: biomedical (disease control/management), relational (intersubjective mutual support) and socio-political (advocacy, campaigning & social context). Additionally, we identify three broad models for delivering peer support: service-led, community-based and social media. Attention to power relations, social and cultural capital, and a co-design approach are key when developing peer support services for disadvantaged and underserved groups. Models from other long-term conditions suggest that peer support for long COVID can and should go beyond biomedical goals and harness the power of relational support and collective advocacy. This may be particularly important when seeking to reduce health inequalities and improve access for a potentially hidden cohort of sufferers.

Open access, https://www.sciencedirect.com/science/article/pii/S0277953623000242

 

[Ash]

”This group are likely to be constituted by already marginalised people at the sharp end of existing health inequalities and not accessing formal clinics

Yeah. Those people would include me.

Marginalised out of healthcare access by your crew. Through papers like this one with your name on it. Your formal clinics, are useful, to you. Not to me or mine.

As a people we need protection from those who have driven us out of society.
We don’t need to perform acceptance of your exclusionary processes.
We don’t need to act as cover for your decisions to not allow us medical access.

We just don’t need it.

This attempt to bring more into your preferred treatment model in a “formal clinic” to would amount to further work to be carried out by us on your behalves.

What’s it actually for?

Is mainly for the money, for the power for the control?
To make you feel worthy, to make you look studious, or to secure further resources for y’all?


It fills me with dread to consider the possibility but could it be that while you’re all doing all this advertising for yourselves, and your own interests, you also like to imagine that you’re working towards meeting the needs of people in general. Or sick folk in particular. I certainly hope you’re all not this out of touch with reality.

Is your work better than nothing?

I can see why you would think so. The people you associate with are each other. I am sure some raining in of the worst of excesses occurs in course of these collaborations. I can also see how this could lead to an inflated sense of your own moderate good influences, for all of you.

But on my own behalf I’d say, definitely and collaboratively your work is worse than nothing. Even when it’s not too awful compared to your previous efforts, it’s just amount to cover for something else as deadly as it ever was.



“socio-political” is it now?

Do you mean to address the white supremacy still going strong?

The eugenics policies everywhere? Renewed and refreshed since this ongoing pandemic began
No hospital admissions for you if you have “care needs” or Learning Disabilities.

Austerity and it’s ongoing death toll?

The oppression of working class women causing dismissal misdiagnosis and death?

The enforcement of impoverishment rollout out first to ethnic minorities disabled and under educated people and now to many others all across the UK?


The fact the the Roma traveler community are now lawfully discriminated against made homeless and left destitute?

The rise in negative portrayal and misinformation across politics and mainstream media of all political persuasions targeting transgender people. This has lead to very high levels of harassment and violence. Such that many more affluent Trans folks are ready to emigrate in search of relative safety. Many more can’t afford to and or they are disabled and therefore would not be allowed to.

Of course a there is lot more UK policy and “socio-political” stuff that is making people sick and killing them you could address. But you’re not doing that are you? You perhaps want terminology that sounds better than previous stuff?

I come to this conclusion because the end result is still telling people that it’s all on them to survive. And that that they are still not doing it right. That it is time for people to stop thinking that they deserve access to medical care even or especially because discrimination and poverty makes them sick.

Instead they can take a deep breath, get active and stay positive. And what is more they can take time and effort to make sure their fellow sufferers are doing this too.


I guess we’ll just have to add this to the to do list and crack on….or drop dead.

 

[rvallee]

Patients have done all the meaningful work so far. The medical profession has been useless so far. And these geniuses' idea is literally: you do you. While, again, completely ignoring existing chronic illnesses, especially the ones that are neglected. Long haulers have said again and again that we have been the only help so far, and none of that made it into this pathetic lack of an effort.

This is completely unserious. It's professionals using the work of amateurs and pretending they did something by making negligence policy, which was already the case anyway, patients have had to self-manage from the start. Meanwhile professional health care is what's missing, and all they can think of is to neglect the patients even more. Great work, geniuses.

And freaking hell it speaks of the fact that without social media, none of this would even be acknowledged and talked about, and somehow makes it into a narrative that ignores the mass negligence policy that continues to deny and discriminate against chronic illness. As if ideologues like Greenhalgh aren't responsible for this mass negligence they seem to think is great.

Why even bother showing up to work if you're going to do something so useless with it?

 

[Hutan]

In doing so, this paper also aims to provide some guidance for those developing peer support services wishing to ensure inclusivity and reach. To do this we draw on a wide peer support literature covering an array of conditions that share certain commonalities with Long COVID. For example, long term conditions that lead to substantial lifestyle changes and often necessitate rehabilitation, such as, diabetes, heart conditions, mental health conditions, head injury and strokes to name a few.

In our review we highlight 31 studies covering a range of conditions including: HIV, diabetes, cancer, long term mental health conditions, spinal cord injuries, dementia, chronic pain and stroke. Studies of peer support undertaken within clinical services have tended to take a quantitative and experimental approach.

With the paper's aim of finding out how peer support has worked in other conditions with commonalities with Long Covid, you might have thought that they would look at the literature on peer support in ME/CFS. If you did, you would be wrong. There's no mention at all of ME/CFS, CFS or chronic fatigue syndrome.

Could it be that acknowledging the enormous commonalities between much of Long Covid and ME/CFS would risk tainting those sufferers of Long Covid in the establishment with all of the victim-blaming labels that have been, and still are, applied to people with ME/CFS?

Could it be that considering ME/CFS literature would require acknowledging the idea put about by her mates that peer support in ME/CFS has been harmful?


In case anyone has forgotten about Greenhalgh - one of the authors of this paper - or are not aware of her:

Just made the mistake of listening to part of "Trisha Greenhalgh Webinar on Long-COVID". Was hosted by the Canadian Institutes of Health Research in a series on Long-Covid, ME & more.

Blood still boiling. Basically said PACE was good research and went on about small, vocal group of patients ............ Can't even type it. Total gaslighting. Then gave example of prominent British physician who was first wary of graded exercise and later used it to successfully recover.

Thread on her here:
Trisha Greenhalgh on ME/CFS and Long Covid

She has been involved in the NICE guideline on Long Covid which "disappears" ME/CFS - the first version at least, and I'm pretty sure the current version, says that ME/CFS literature was not considered in developing the guideline.

 

[NelliePledge]

Would be interesting to see Greenhalgh interviewed by @dave30th if that could happen

 

[rvallee]

Read a bit more in detail and it's honestly impressive how offensive and clueless this editorial/paper is. How they talk about communities rejected by medicine, which they explicitly do by ignoring the context in which Long Covid is situated. It's as bad as the worst BPS fanatics pushing the conversion disorder, it just takes a different route to accomplish the same outcome. They completely ignore what obviously makes up most of Long Covid, the same denial that caused the problem in the first place, by some of the same people.

It's not credible that no one on this team, especially Greenhalgh, is not aware of the history of ME and can't reasonably have missed all the discussion about how this is exactly like all the discriminated chronic illnesses. And yet they ignore all of those, focusing instead almost entirely on issues of discrimination unrelated to illness or health, almost all the examples discussed have nothing to do with the issue of medical gaslighting, which of course is not discussed at all, and how it has a huge historical context, especially the UK.

It's certainly not credible that this was not raised by patient input, meaning they ignored patient input. In fact there is basically nothing about or from patients here, it's almost all about initiatives undertaken within healthcare systems to address them, which is completely different from the issue of an invalid medical model that manifests mostly through gaslighting, incompetence and denial.

So really this is peak academicism, it talks about abstract issues loosely related to reality, while never even looking at reality. It's rambling, incoherent and barely holds any actual idea. They talk about co-production of support but ignore everything the patients tell them, only have the usual "here's the solution, do it or get out of here". A lot of the peer support out there is actually about how awful healthcare is, how they don't have anything useful to offer and the far too many examples of blatantly insulting lies and nonsense they are told along the way. None of it is there, it completely washes most of the issues to make medicine appear benevolent while they push the same old "you do you" negligence.

An impressive piece of propaganda, Orwell would be proud of how it paints a different narrative while pretending to be sympathetic. Oddly enough I never see anyone talk about Greenhalgh or her work. A textbook example of Martin Luther King's fake allies, who may mean well but ultimately perpetuate the state of oppression just as effectively as those who mean to.

As usual, the failure is not technical. This is human failure, of empathy, of listening and of giving respect to the lived experience of others. There isn't any in there, this is merely a smiley face on the same old nightmare.

 

[Trish]

Through a systematic hermeneutic literature review

Being only a dumb patient this phrase left me blank.

So I looked it up:

hermeneutics - the branch of knowledge that deals with interpretation, especially of the Bible or literary texts.

Not much use.
So I tried Wikipedia:
https://en.wikipedia.org/wiki/Hermeneutics

Spoiler: More bibical stuff

Hermeneutics (/ˌhɜːrməˈnjuːtɪks/)[1] is the theory and methodology of interpretation,[2][3] especially the interpretation of biblical texts, wisdom literature, and philosophical texts.[4][5] Hermeneutics is more than interpretative principles or methods used when immediate comprehension fails and includes the art of understanding and communication.[6]

Modern hermeneutics includes both verbal and non-verbal communication[7][8] as well as semiotics, presuppositions, and pre-understandings. Hermeneutics has been broadly applied in the humanities, especially in law, history and theology.

Hermeneutics was initially applied to the interpretation, or exegesis, of scripture, and has been later broadened to questions of general interpretation.[9] The terms hermeneutics and exegesis are sometimes used interchangeably. Hermeneutics is a wider discipline which includes written, verbal, and non-verbal[7][8] communication. Exegesis focuses primarily upon the word and grammar of texts.

Hermeneutic, as a count noun in the singular, refers to some particular method of interpretation (see, in contrast, double hermeneutic).

I tried a more specific search and found this:
A Hermeneutic Approach for Conducting Literature Reviews and Literature Searches Sebastian K Boell The University of Sydney Business School, Australia
https://aisel.aisnet.org/cgi/viewcontent.cgi?article=3733&context=cais

Abstract:
The quality and success of scholarly work depends in large measure on the quality of the literature review process. This paper advances conceptual understanding of the literature review process and extends earlier guidelines on literature reviews. It proposes a hermeneutic framework that integrates the analysis and interpretation of literature and the search for literature. This hermeneutic framework describes the literature review process as fundamentally a process of developing understanding that is iterative in nature. Using the hermeneutic circle it describes the literature review process as being constituted by literature searching, classifying and mapping, critical assessment, and argument development. The hermeneutic approach emphasizes continuous engagement with and gradual development of a body of literature during which increased understanding and insights are developed. The paper contributes to better understanding of the literature review process and provides guidelines to assist researchers in conducting high quality reviews. Approaches for efficient searching are included in an Appendix.

So basically it's saying don't just do a review, think about it too.

 

[dave30th]

Being only a dumb patient this phrase left me blank.

me too!!

 

[rvallee]

So basically it's saying don't just do a review, think about it too.

Uhhh... I guess they skipped that part, then?

 

[Hutan]

Through a systematic hermeneutic literature review of peer support in other conditions

We applied a hermeneutic method that has been used successfully in previous reviews covering similarly complex conditions that have serious public health implications such as heart failure (for details of the method, Boell and CecezKecmanovic, 2014; for successful application, (Greenhalgh et al., 2017) et al., 2017).

Yep, that's Greenhalgh referencing her own paper, suggesting it was a successful application of the hermeneutic technique.

Taking its name from the philosophical movement, hermeneutics is a theory of the interpretation of texts. It is iterative, with the interpreter(s) generating new meanings and avenues of enquiry as research questions develop through engagement with existing literature (Greenhalgh et al., 2017).

When adopting a hermeneutic methodology, there are two interwoven processes: (i) searching for, selecting and interpreting relevant literature, (ii) and then feeding back to reflectively develop research questions (Fig. 1). As papers accumulate, the researchers use the ideas and arguments formed to filter out less relevant papers. The method is both systematic and flexible, beginning with a predefined search strategy but also using progressive focusing to allow the researchers’ own evidence-driven arguments to play a role in the selection of papers (Boell and CecezKecmanovic, 2014; Greenhalgh et al., 2017).

So, hermeneutics seems to be pretty much a fancy word for saying "we did whatever the hell we liked as we searched for papers that supported the stories we wanted to tell". I think others have used the word 'pragmatic'.

That could be an acceptable approach to a literature review, and I suspect that it is what most people undertaking literature reviews actually end up doing. (Though, combining 'systematic' and 'hermeneutic' seems a bit oxymoronic.) What most researchers don't do is clutter up a paper on a particular topic with an extensive justification for being highly selective about what literature they bothered to read and consider. These researchers however did feel that they needed to divert from the topic of the paper to give us an extensive justification, including an elaborate circular diagram taken from another Greenhalgh paper:




In this case, 'hermeneutic' seems to be the 'get out of jail free card' as to why a systematic survey of the literature about 'similarly complex conditions that have serious public health implications' failed to report on the differing views about peer support in ME/CFS.



It's a shame that the authors didn't feel inclined to apply the same level of precision to a topic that is rather more central to their paper: the definition of Long Covid.

‘Long COVID’, the term preferred by those living with the condition (Callard and Perego, 2021), is a growing global problem. We follow recent evidence from the UK to define Long COVID as persistent COVID-19 symptoms >4 weeks after acute onset (National Health Service (NHS), 2022). Now affecting between 10 and 20% of British COVID sufferers, representing 2 million people (Office of National Statistics, 1st June 2022) and an estimated 200 million people worldwide (Chen et al., 2022). Yet, scepticism still exists around the nature, diagnosis and even existence of the condition.

Long COVID can persist for months or years; be severe and diverse; including ongoing fever, pain, extreme fatigue, breathlessness, newly arising mental health issues, and neurocognitive problems (Davis et al., 2021; NHS, 2022; Ziauddeen et al., 2021).

There will be different causes of "persistent COVID-19 symptoms", and so there needs to be different treatments. It's an issue I am becoming increasingly concerned about. It seems a great way to sweep real and particular issues under the carpet - exemplified by a suggestion we have seen elsewhere that a session with the Royal Opera on breathing will solve them all. Long Covid, as it is defined in this paper, is not a single condition.

 

[Sean]

Hermeneutic is one of those buzzwords that was getting around cultural studies departments when I was at uni 35 years ago.

It was crap then and still is.

 

[Trish]

With the paper's aim of finding out how peer support has worked in other conditions with commonalities with Long Covid, you might have thought that they would look at the literature on peer support in ME/CFS. If you did, you would be wrong. There's no mention at all of ME/CFS, CFS or chronic fatigue syndrome.

Is there any research on peer support in ME/CFS?

 

[Trish]

I've copied a whole section here as I found it an odd and therefore interesting way of describing patient self monitoring of symptoms and signs.
I've added paragraph breaks.

3.2.1. Biomedical framings of peer support

Health-based peer support can be understood through the lens of biomedicalisation. According to Adele Clarke et al. (2003), biomedicine represents the increasingly complex multidirectional processes of medicalisation that often focus on health technologies, risk, surveillance, and medical information management and knowledge production.

The five facets of biomedicalisation share an over-arching focus on co-transformation and production of bodies and technologies. Within this, self-management and surveillance is linked to how technologies reshape the body as a site of risk, and introduce new modes for surveillance and risk reduction.

For example, such approaches view peer support as an educational self-management intervention, lending itself well to assessing the impact of particular interventions and knowledge sharing in terms of measurable outcomes – such as, disease progression or symptom control (Casteltein et al., 2008; Grant et al., 2021).

However, such approaches tend to view patients, their bodies, experiences, and conditions as compartmentalised. For example, Castelein, et al., (2008) carried out a randomised control trial in which the impact of peer support was examined for patients with psychosis. Although incorporating aspects of wellbeing, these were broken down into measurable components such as: personal networks; social support and positive social interactions; self-efficacy; self-esteem; and quality of life or general health. These outcomes were measured through questionnaires that yielded a numerical score for each variable of interest. While helpful up to a point, this kind of approach is reductionist because the patient's multifaceted and interconnected experience is compartmentalised into variables which are assumed to interact according to a more or less generalisable model and set of rules, producing similar disease or illness mitigation outcomes across a diverse sample (Dollarhide and Oliver, 2014; Elkins, 2009).

Biomedical models of peer support are not designed to explore or address – and may unintentionally overlook – the relatedness between a person's, or group's, social context, inter-personal relationships and behaviours that combined make up the lived experience of a particular condition or illness, nor do they centrally address structural inequalities (Mullard, 2021).

Quite often biomedical models of peer support are, then, seen through the lens of self-quantification, encouraging patients to construct an understanding of self through reconfiguring the quantifiable truths about their conditions and the hopes of wellness. In doing so, patients co-create experiential knowledge about their conditions and how to manage them (Moreira and Palladino, 2005). Despite its limitations, the biomedical lens often drives the design and delivery of service-led peer support (Casteltein et al., 2008; Grant et al., 2021).

I wasn't sure how much the authors liked this approach - it seemed to be seen only as of value if in the context of also providing social support, but I haven't read the whole paper in detail. There's quite a lot of focus, naturally given the aims of the paper, on support groups that include or focus on marginalised groups, eg specific groups defined by gender, ethnicity and disease. I'm sure some of these are very valuable to their participants provided they are available alongside also getting adequate medical care.

This general 'finding' could have been written without doing any of this research review, as it's so obvious and general:

Findings from comparable conditions suggest that well-designed peer support services combining biomedical, relational and socio-political framings may well produce positive changes in disease biomarkers and ongoing course of the condition (i.e., such services are likely to deliver biomedical benefits). Moreover, adopting a co-production framework that unites the top-down interests of service providers with the bottom-up needs of patients would further lead to better outcomes.

It goes on:

This review has also highlighted the social and relational benefits of peer support, with reciprocity as an important factor in improving the wellbeing of patients with chronic conditions (Keyes et al., 2016; Litchman et al., 2018; Muller et al., 2014)—a benefit that may have particular salience to Long COVID patients, many of whom experienced confusion and struggled to gain legitimacy, assessment and support in the early months of their illness (Rushforth et al., 2021). Findings that peer support groups may help improve individual patients’ feelings of autonomy, relatedness and competence (Casteltein et al., 2008; ChemtobCaron et al., 2018; Sweet et al., 2018) and build self-efficacy and self-determination (Bugental, 1964; Ryan and Deci, 2000) also offer hope to Long COVID patients who may have become demotivated and disengaged as a result of their chronic and unpredictable illness. The positive role of peer support groups in providing members with information, resources and connections within their networks (Hope and Ali, 2019; Im and Rosenberg, 2015) could potentially help overcome the confusion and isolation experienced by Long COVID patients and their families. Whether these socio-emotional and socio-material benefits act?ually occur will depend on the detail of the specific interventions, their contexts and the fidelity of its delivery.

Nice bit of patient blaming there that I've bolded. What does 'demotivated and disengaged' mean? Demotivated to do what? Disengaged from what? Whose fault is that?

 

[Andy]

Is there any research on peer support in ME/CFS?

A quick Google search gives these (I have given the forum thread where we have it)

Provision of Social Support to Individuals With Chronic Fatigue Syndrome, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3693568/

Impacts of online support groups on quality of life, and perceived anxiety and depression in those with ME/CFS: a survey, 2021, Morehouse et al

Professional support of self-help groups: a support group project for Chronic Fatigue Syndrome patients, https://www.researchgate.net/public...project_for_Chronic_Fatigue_Syndrome_Patients

Using the internet to cope with chronic fatigue syndrome/myalgic encephalomyelitis in adolescence: a qualitative study (Brigden et al., 2018)

 

[Trish]

I have split the following paragraph into 3 shorter sections so I can comment on each:

4.3. Balancing biomedical, relational and socio-political aspects of peer support
Much has been achieved through biomedical models of peer support, but these models have been rightly criticised for being overly concerned with eliminating diseases rather than holistically considering the individual's psychosocial wellbeing and wider social relations.

That's a massive generalisation I'm not comfortable with. There are no doubt some groups whose entire focus is on symptom tracking, eg FB group on using heart rate monitoring for pacing. Why does that have to be holitisic too? And as far as I'm concerned, I want to find ways to improve my physical health. If I had severe asthma, I'd want a forum focused on the best medications and how best to use them, not to know about how many children or knitting patterns the person I'm talking to has. Sure there are other groups where we want to combine all 3, like this one, but they don't have to all be the same.

Moreover, ‘deficit-based’ models (which define patients as deficient in health, knowledge, skills and so on) located in clinics can demean and even infantilise patients (Scott and Doughty, 2012). To minimise these negative effects, peer support programmes could incorporate strength-based or asset-based approaches that utilise community assets such as voluntary sector organisations, faith-based centres and facilities, lunch clubs, and baby groups (Hope and Ali, 2019; Mead et al., 2001).

That seems like an odd sort of logic. Clinics are those expected to be knowledgeable and to infantilise patients, so to help patient feel less intimidated, let's take them somewhere in the community where people know nothing about the disease so they feel more at home. Er what? How about the clinic being more accessible and treating patients as intelligent partners in their care, and providing educational materials at the clinic for people with different backgrounds and knowledge. How about clinics stop infantilising patients.

In this way, the person with Long COVID might shift from being someone suffering from shame and blame to someone who is aware of shared experiences and risks, is part of a collective narrative and contributes to a body of shared practical knowledge, which in turn can generate deeper understandings of recovery linked to a holistic model of health incorporating wellbeing, autonomy and the ability to participate in society (Marmot, 2006; World Health Organisation, 2002).

As my mother used to say. Fine words butter no parsnips. It's up to the clinicians to stop shaming and blaming and briefing journalists to shame and blame.

 

[Trish]

I have looked through the whole paper and commented on a few small sections. My overall impression is that this paper could have been written without any literature review. There's nothing new or particularly interesting here.

They found what they expected to find - that peer support groups happens in different forms - clinician led and patient led, and face to face and online. And that it has different purposes - symptom tracking to help with self management of whatever disease, mutual support, and advocacy.

They focus quite a lot, as was their stated intention, on how such groups could work to include people from marginalised communities who may not be accessing clinical care, both to support them and to encourage them into clinical care.
Edit to add: I have no problem with that as far as it goes, but it highlights a massive failing in health services.
________________________

The areas I think the missed out on that I think are very important are:

The education of patients not only about their own health but about current research and research critique

Involvement of patients in service design and in research design and practice

Communication between patients, clinicians and researchers in a more equal environment for mutual learning

The misuse of patient support groups to advertise and/or spread misinformation about quack and unevidenced treatments and the harm that follows.

The misuse of patient groups as 'support' for bad research, eg in the past AfME giving cover for PACE

Edit to add:

And how to improve accessible and valid clinical care so patients are less driven to online support groups which may be good, or may be overflowing with misinformation.

And patients being driven to support groups to try to undo the harm the clinics have done.

Further edit:

All that junk about hermeneutics and how the process was done makes me think this is someone's PhD thesis. Sigh.

 

[Trish]

A quick Google search gives these (I have given the forum thread where we have it)

Thanks Andy.

 

[Andy]

Thanks Andy.

Meant to say that I didn't attempt an exhaustive search, so there may well be other examples that could be found.

 

[Hoopoe]

Did they ask long covid patients about the good and bad aspects of peer support?

I am not sure there is much value in a literature review of peer support in other illnesses. The literature tends to be written by academics who inject their own biases, not patients. And other illnesses are different.

 

[Hutan]

Meant to say that I didn't attempt an exhaustive search, so there may well be other examples that could be found.

There are some more threads tagged with 'peer support' and 'support groups' - click on the tag at the top left of the thread. BPS researchers have been quite active in being concerned about peer support e.g.

I hypothesize that many new (electronic support groups) for sufferers of yet-to-crystallize syndromes will appear in the future, and here, too, we can expect to see similar mechanisms at work. Grounding their claims in embodied expertise, such online communities will demand that new functional somatic syndromes and other contested illness classifications be created and recognized. ….given our cultural impatience and intolerance for even low-grade pain and suffering, coupled with our strong desire to have these discomforts medically classified and treated (Barsky and Borus 1995; Kleinman 1986).

Surely that literature is relevant to the question addressed by this paper?