'These are not verifiable conditions'

Thoughts on Emily Mendenhall’s new book ‘Invisible Illness: a history, from hysteria to Long Covid' - by Dr Elke Hausmann.

We are pleased to welcome Dr Elke Hausmann as a guest writer and friend of Long Covid Advocacy. In this article she delves into the details and controversies of Emily Mendenhall’s new book ‘Invisible Illness’ with precision and acuity - providing a much needed analysis for the community.

TL;DR

Making the experience of invisible illness visible (to others – it’s pretty visible to ourselves!)

Emily Mendenhall is a US American medical anthropologist whose new book ‘Invisible Illness – a history, from hysteria to Long Covid’ has just been published. I first listened to an interview where she discusses her book, then I read the book itself. (All page numbers cited are from the e-book edition set to 699 pages).

There are a lot of positives to be said about this book. It sets out to make the experience of people who live with what she calls ‘complex chronic conditions’ visible, and she manages to do that by giving us many patients’ stories, including her own (she had 4 months of Long Covid symptoms and subsequently experienced a surge in her pre-existing anxiety (p.329-334)). It is impossible to divorce our own experience from both writing and reading the book, and my experience is also one of Long Covid, which has disrupted my career as a medical doctor (I am now not able to work as a GP); it is maybe worth noting that I have also studied sociology and social anthropology prior to studying medicine.

So first of all, let me set out all that I agree with. This book is situating itself firmly on the side of the patients and a main takeaway for everyone should be this:

No patient living with chronic illness should be left unhoused, hungry, afraid, and alone due to illness. (Mendenhall, p.533).

There are many forces in the world today that would disagree with that, so all of us who do agree need to understand that we are on the same side, and that there are bigger fights than any disagreements we might have, and we need to be able to fight them together.

My impression was that the author, who has spoken to many patients, has a good grasp of the current situation that patients with illnesses like Long Covid find themselves in. In the podcast she decries how many people, particularly women, and black women even more so, and their illnesses, have been dismissed by the medical profession, not just currently but throughout history. She criticises the psychologising of illnesses that have a biological basis - she acknowledges that while ‘FND (functional neurological disorder) can be a real thing’, for patients who know that their illness is due to a:

deep physical dysfunction, dismissing their pain as really psychological is upsetting and demoralising. (Mendenhall, KPFA Podcast)

She talks about Long Covid clinics and how they have been set up to work as a ‘switchboard’ where patients are sent to see multiple health care professionals at multiple appointments, which does not work well for patients with an energy-limiting condition, who want and need to use their limited energy for things other than repeated appointments, and suggests that this could be organised differently for the benefit of the patients. She talks about advocacy and is in dialogue with people in the disability movement. In that sense, she is an important voice for making invisible illnesses and their experience visible to hopefully a wider audience.

Many experiences described in the book resonate with my own experience – for example I can relate to the concept of the ‘credibility economy’ (p.459): in encounters with other health care professionals I have felt that I needed to state that I was a doctor to be taken more seriously (only to find that the status of patient trumps that of doctor).

Episodic Disability

There are great descriptions of what it is like to live with an ‘episodic and dynamic’ (p.414) condition and all that comes with it - including others not believing that you are ‘really’ ill when they see you on a day when you look well and appear to function. The recent spate of newspaper articles claiming that people are fraudulently using assisted travel at airports, because some have been observed to get out of their wheelchairs and walk, reminds us that most people are not aware of the concept of an ‘ambulatory wheelchair user’ (p.370) who can walk, but not far, or walking too far might have repercussions like a crash down the line, and that can be exploited by bad actors trying to pitch people against each other. Mendenhall writes:

for many people, the most difficult thing is gauging what they can and cannot do – and predicting when a crash will transpire. Yet, most people who don’t experience this post-exertional malaise cannot understand why those people become so exhausted. (Mendenhall, p.381).

This is my experience, only I would say I get UNWELL, not exhausted. PEM is NOT fatigue.

‘These are not verifiable conditions’

And unfortunately here we are already at a point where I need to start discussing all the things I don’t agree with in this book.

There was one particular term I struggled with: ‘verifiable’.

These are not verifiable conditions. (Mendenhall)

I was a bit disconcerted to hear this phrase repeatedly in the interview and it also appears in the book. It relates to the fact that for many complex chronic conditions, we have no simple lab tests or procedures (yet) that will give us the definitive diagnosis.

Now, you must remember that Mendenhall tries to talk about complex chronic illness in general. At times, this category seems to get too broad, seemingly including conditions like endometriosis (which has a long history of being dismissed by the medical profession, but is very much visible and ‘verifiable’, if you care to look (see p.291). I read the book from the point of view of my experience and what I have learnt about Long Covid and ME. Curiously, talking about ‘invisible illness’ in the singular, the specific experience of ME seems to once again have been made more invisible.

Here, we might well hit on the crux of where people in the ME community may diverge from the author’s point of view. When Mendenhall says that ‘these are not verifiable conditions’, she is talking about the here and now, but the phrase and how she uses it seems to suggest that there is something about the ‘complex chronic conditions’ she writes about which means that they ARE NOT AND WILL NEVER BE verifiable. And that goes completely against what many in the ME community are arguing for: that there is nothing inherently different about these conditions compared to other medical conditions that we understand better, and with research we are hoping that we will get to a similar understanding of Long Covid and ME, so they will become just like any other medical condition, with biomarkers and diagnostic tests, and hopefully curative treatments.

Hysteria and Long Covid

There is a sense that Mendenhall still believes that hysteria has never gone away, that it lives on in conditions like ME. The title, ‘from hysteria to Long Covid’, is in itself ambivalent about whether it just relates to a continuity in how certain medical conditions have been framed throughout history, or whether there actually IS a communality that these illnesses share, as in that they are entities that cannot be abstracted from the person, but are fundamentally generated by and entwined with the person, with personality, with ‘temperament’. She states when discussing Hippocrates and the Ancients:

the instinct to connect illness and temperament continues to help frame how we should think about medicine and health today (p.149).

I felt that the book was implying that anybody hoping for a cure is being taken in by the biomedical model of illness that was presented as narrow and outdated. By hoping for a cure, people are seen as limiting themselves to languishing in the here and now, rather than taking their health into their own hands – eg by trying all sorts of non-evidence based treatments and supplements, lifestyle changes and adopting a meaningful new way of living with chronic illness. The following sentence demonstates that:

the way the medical model doggedly and narrowly envisions cure can threaten to obscure the wisdom of people’s bodies (Mendenhall, p.372).

In reality, it is of course perfectly possible to do all of what she suggests (whether that is always sensible or not) and STILL HOPE FOR A CURE, delivered by the biomedical model.

We needn’t be sidetracked by

the strive towards an imagined and stratified biomedical utopia that fuels much recent culturally seductive medical innovation and intervention intended to fix if not cure disability (Rapp and Ginsburg quoted p.491).

and can be horrified by the increasingly loud voices transporting the eugenic aim of confining disability, and disabled people, to history. It is still possible to say that we’d rather get rid again of our acquired disability and get back to where we were and what we used to be able to do before the virus got to us, without that devaluing other people with disabilities and whilst still calling for less dis-abling environments and social organisation.

Disability and Chronic Illness

There is some discussion of the fraught relationship between disability and chronic illness:

the concept of disability can be difficult for chronically ill people, in part because it cultivates an unease about the permanence of their condition. (Mendenhall, p.417).

She quotes:

there is a reluctance from long COVID patients to consider themselves disabled, or to consider that their conditions are not temporary. (Mendenhall, p.418).

We don’t know if we will recover, but the longer we are ill, the less likely it seems. There is an issue here around acceptance, even while we are being told constantly by people trying to sell us something (or, like in the case of Paul Garner, generalising from his own experience) that recovery is possible here and now, if only we do what they say or buy what they offer.

It is becoming more accepted now that a lot of severe Long Covid looks very similar to ME, which is why both are now often discussed together. Many people with Long Covid who do not recover after a period of months have been looking to the history of ME for guidance. The hallmark symptoms of ME is PEM, or post-exertional malaise, which many Long Covid patients also experience. As mentioned previously, PEM and crashes do get a mention in the book. I was a bit puzzled though as to why the term PEME (’post-exertional malaise exacerbation’(eg p.207) or ‘post-exertional malaise intolerance’ (p.230) were used – these are not terms I have heard before – what is the significance of changing the terminology?

Idiom of Distress

I think we need to understand that in anthropology, as Mendenhall says, CFS or chronic fatigue syndrome was long seen as an ‘idiom of distress’ (p.179), and I feel that Mendenhall has not been able to free herself from that entirely in relation to ME. She seems to endorse the notion that:

patients resist a psychiatric diagnosis because, despite the growing acceptance of psychotherapy (…) mental health conditions remain stigmatised, and such understanding delegitimates their suffering (Mendenhall, p. 204).

An idea that has been rejected by ME patients arguing that actually, they would prefer a mental health condition, because it confers LESS stigma than ME, and potential treatments.

She states that;

many clinicians find that this [depression] is a defining feature of ME/CFS (p.350),

that studies into the effect of CBT (cognitive behavioural therapy) for CFS have shown

improving mood disorder was not the reason why CBT remains a moderately effective treatment for CFS (p.215),

and that the PACE trial has not been redacted by The Lancet because:

the UK Medical Research Council and the Health Research Authority of the NHS determined that the trial was robust (p.230)

and that

the widespread acceptance of the clinical recommendations that CBT and GET [graded exercise therapy] would help overcome chronic fatigue, even when patients experience post-exertional malaise intolerance (sic), is common but also changing and more nuanced. (Mendenhall, p.230-231).

In addition to that, patients with ME will not be happy to see Wessely and Sharpe quoted neutrally, while in contrast patients are presented as emotional and threatening: ‘infuriated, frustrated, outraged’ (p.216-221), unthinkingly reproducing a trope that has been used to undermine the credibility of ME patients for many years.

The Bodymind

I would argue that Mendenhall’s stance of hedging her bets in relation to CBT and GET stems directly from her core concept of the ‘bodymind’, which does not allow her to make the crucial distinction that while we always experience bodily illness through the ‘subject body’, which includes our mind, that does not mean that the illness itself must always be an at least partly psychological condition, and cannot be seen as a purely physical event (see my discussion of the ‘subject body’ and the ‘object body’).

This may well be due to her experience of Long Covid, which prominently featured anxiety. Also, she may never have experienced PEM and therefore not be aware that this is a qualitatively completely different experience from what she might imagine it is, trying to relate it to an experience that she and most people can relate to, eg severe exhaustion or fatigue. This is a difficult one – it is hard to know how to overcome this gulf of (mis)understanding.

There is a discussion to be had about whether Long Covid must always include neuropsychiatric features, or whether it can be a purely physical condition. My experience points towards the latter, and colours how I see Long Covid and ME as purely physical conditions, with psychological consequences similar to the experience of other non-psychiatric medical conditions. CBT may well be helpful for patients with Long Covid and ME, but not to treat their Long Covid and ME, but to support them in living with the consequences of having a disabling physical health condition, or treating any psychiatric co-morbidities, should they be present. It is not possible to see that nuance when all you have is the concept of the un-differentiated ‘bodymind’.

A Theory of Illness Causation

This leads me on to the theory of how complex chronic illness is generated which is running through this book, and the related theories arising from this as to how recovery might be possible. In keeping with her idea of the ‘bodymind’, it concentrates on the individual who gets sick, thus providing us with a very individuocentric focus, as opposed to a zoomed-out one with a cultural and societal focus which could explain WHY SO MANY OF US get sick.

Dysregulation

Mendenhall sets out her theory as follows:

the more layers of distress you have in the body, the more dysregulated your body will be. And that makes a lot of sense (…). One of my theories for Long Covid or these unverifiable conditions in general, is you’re already carrying a lot of dysregulation in the body from possibly trauma, from, you know, unrectified medical conditions, from maybe biological vulnerability, maybe even environmental exposures, and you carry these conditions in the body and then the virus, the Long Covid virus (sic), tips you over the edge, you go over the threshold, and your body goes into disregulation. (Mendenhall quote from the podcast).

Mendenhall expands on these thoughts in the book with her concepts of ‘thresholds’, ‘weathering’, ‘allostatic load’, ‘exposomes’ (p.279). Essentially what all of them say is that ‘cumulative burdens over the life course build on one another to cause sickness’ (p.279), that to explain individual complex chronic illness, multiple insults that ‘enter the bodymind thought the mouth, skin and emotions’ (p.279) will be causing mischief under the surface, bubbling away, until the last straw that breaks the camel’s back – eg the Covid virus tips you over into illness.

This is a very attractive theory because it allows an ill person to try to piece together what might have contributed to their illness, and point them to where they might change their ways to get healthier. In this theory, people who are ill have by definition tipped over, so anything is fair game now for a blame game, from their genes, to the environment they grew up in, to their habits and lifestyle.

Individuocentric

We didn’t choose the body we were born with, the country and time we were born in, the parents and family we were born into and who raised us. We can potentially change our habits and lifestyle, but how much difference can that make? A lot for type 2 diabetes, maybe, which is a lifestyle-related illness, but for Long Covid and ME? I suspect we tend to overestimate the amount of control we have over our ‘preexisting vulnerabilities’, and I find it a bit disturbing that these days those are becoming so much the focus of our attention when talking about the generation of illness, shifting the responsibility of illness causation onto the individual, and away from society.

Our ideas about who is (more) vulnerable in relation to the Covid virus has changed significantly since the start of the pandemic, and while it is important work to increase individual-centred knowledge in this area, this kind of focus can take us away from the simple fact that without the Covid virus, there would be no Long Covid. Or if we would at least attempt to contain the virus, there would be a lot less Long Covid.

Where an individuocentric focus can ultimately lead to can be gleaned from the way the tobacco industry made use of the theories of the ‘father of stress’ Hans Selye to argue against a causal role for smoking in coronary artery disease and cancer in the mid 20th century. The idea that it’s stress or ‘trauma’ that makes you ill, not the virus, is a very common one now, which you can encounter everywhere (not least in the circle around Paul Garner).

Again, this is an attractive idea, because if by definition you got ill because you had stress, and since anything can be categorised as stress (life itself, if you think about it), you will find something in your past that may justify this view, which is a tautology and not proof that stress causes illness.

Calm Down

The follow-on advice is to ‘calm your nervous system’, for example with meditation and breathing exercises. Now think about what that assertion does. It individualises illness. It shifts responsibility for the illness onto the individual body and person. It diverts attention away from the task that society should assume of protecting people from the virus. It fits in disturbingly well with the right-wing, even eugenic, world view that ultimately, illness as an individual problem: you’re responsible for getting ill, you’re responsible for getting better, and if you don’t manage that – so be it. It also feeds the idea that because there are so many things that happened to you or that you may have done that caused this, surely if you manage to untangle those and change your behaviour, then you will get better. And if you don’t get better, you’re doing something wrong.

Now, it may well be that stress has something to do with who gets ill. We know that inequality, and all that comes with it for people at the poorer end who have less agency, does increase the risk of illness in general for them, compared to richer and more privileged cohorts. But to change inequality, we need system-wide changes. So that’s what we should be focusing on.

Going back to the level of individuals, many patients with ME have always said that they can change their behaviour as much as they want, engage in psychotherapy as much as they want, and they are still ill. Children who have not had a chance yet to accrue large amounts of trauma are getting Long Covid. There is clearly a more important factor that causes these illnesses apart from stress.

I want to acknowledge that many people with these kinds of illnesses do appreciate the message that they can do something about their illness – people want and need to be agents in their own lives, and people need hope, as is often said by those who suggest that we can cure ourselves. I’m sure there are people who benefit from engaging with practices like meditation in many ways. But will those practices make them healthy again? If they did, we would by now prescribe them to everybody. The fact that we don’t means that we have no evidence that they do cure. And we have to say that very clearly.

Now, I am not suggesting that Mendenhall and her theory of thresholds equates to saying that stress causes Long Covid, but it shares with it a focus onto the individual in the causation of illness. It also shares the idea that ‘perceptions’ are important (p.281). However, by adding other factors apart from stress and trauma to the mix, interestingly she is actually coming to the opposite conclusion to the proponents of the stress theory. While they suggest that by addressing that stress, we can cure ourselves, she states:

As I have argued throughout this book, recovery with a complex chronic condition is not about a cure because there is none, although some people go into remission. (Mendenhall, p.515).

This is an important point, because all too often recovery and cure are presented as synonyms, and misunderstandings arise in relation to what claims people are actually making when they say that certain treatments are effective.

Doing justice to the specific experience of patients with Long Covid and ME

Mendenhall introduces the ‘crip term’ ‘bodymind’ right at the beginning of her book, where she also sets out her definitions. There is a lot to be said about the relationship between the mind and the body, and I have grappled with that in an essay last summer (see the link above in relation to the ‘subject body’). Interestingly she seems to suggests in those definitions that dysautonomia is the main problem in both Long Covid and ME.

Vagus Nerve

We are all familiar with the cult status we are currently affording to the vagus nerve, which goes much beyond what we actually know about how it is affected, and involved in illness generation and recovery. Just google ‘vagus hacks’. Mendenhall makes reference to VanElzakker (a neuroscientist originally focused on the neurobiology of trauma), when she writes that he argues that the:

vagus nerve is possibly the key to ME/CFS symptoms, in part because it tricks the body into thinking it is sick (…) which triggers immune cells to release pro-inflammatory cytokines that sends a signal to the brain that the body is sick. This is not unlike the well-documented cytokine storm with the acute virus of Covid-19. (Mendenhall, p319-321).

Her language of a ‘thinking’ body can only refer to the ‘bodymind’, and writing that the vagus nerve ‘tricks the body into thinking it is sick’ makes it sound as if the body is not ‘really’ sick, but that we are dealing with an essentially healthy body that plays tricks on a healthy brain, and thereby leads the person into adopting ‘sickness behaviour’ – which can then progress to the idea that ‘changing behaviour’ in itself could be a ‘cure’.

Now, taking a reality check, we can say that during a cytokine storm, the body does get very sick, to the point where it can die. Mendenhall’s framing of the argument reads like a continuation of the trope that people with ME are not really sick, in the same way that people with other illnesses, which leave a visible physical mark on the physical body, are sick. In fact, from how I understand it, when VanElzakker writes about the involvment of the vagus nerve in ME, he is proposing a disease process that physically and materially causes sickness - nothing to do with ‘perceptions’ or ‘behaviour’. If it was about ‘perceptions’ and ‘behaviours’, some of the ‘vagus hacks’ around might actually work.

Dysautonomia

Dysautonomia is very real, and we are still learning about it. Now, dysautonomia certainly is ONE problem in Long Covid and ME, but to not mention PEM (post-exertional malaise) in her definitions at all is a severe omission, if you want to talk seriously about ME. As I said, she does mention PEM in the interview and in the book, but disappointingly she seems to equate it with fatigue, rather than the severe symptoms that constitute a crash that go way beyond fatigue, indeed are something qualitatively completely different from fatigue.

Here we can see how you come to the limit of doing justice to the history and experience of ME, if you want to discuss it as just one facet of ‘complex chronic illness’, as it harbours the danger of erasing its important specificity. Mendenhall mentions in relation to Long Covid how difficult it is to talk about our experiences where we have not cultivated a shared language yet (p.459). She is right, we are still in the process of creating a shared language, for Long Covid, but also for ME, and it is really important that we get it right. Mendenhall calls for better education and training for health care professionals in these conditions, but we need to make sure that we teach them the right things.

While this book undoubtably represents a valuable contribution to making the experience of ‘invisible illness’ in general more visible to the reader, that reader needs to be aware that in relation to ME (and the form of Long Covid that closely resembles it, or indeed some argue ‘is’ it), there are issues here that are contentious.

Moving Forward

Moving forward, what we need to do is to come to a clearer common understanding of what PEM is, keep explaining that there are good reasons for why CBT and GET are no longer recommended as treatments for ME by NICE, recognise that there is nothing about ME patients that makes them particularly emotional or threatening (the reason that this stereotype does not die is that with each new generation, some ME patients get provoked to anger by the way they are being misrepresented and/or treated, which is then exploited by those who treat them as such – very sad to see that stereotype reproduced in a book like this), and convince people that it is not a good idea to give up on the ‘biomedical model’ in coming up with treatments and, ultimately and ideally, a cure for Long Covid and ME. And just a reminder that a quarter of ME patients are severely affected, trapped in a living hell that even the majority of people with complex chronic conditions will struggle to imagine (myself included).

We also need to keep flying the flag for prevention – we KNOW that the Covid virus is the ultimate cause of Long Covid, so let’s focus our efforts on putting measures in place that ensure that that less people get infected in the first place.