AF: Chris, before we enter the DeCode study and the science of ME and Long Covid, I want to start by asking whether, as a medical scientist, you ever have recourse to metaphor?
Science is full of metaphors because what we study is so abstract. As a geneticist, do I think of a gene as its atoms and chemical bonds? No, I think of a gene as a long ribbon of letters that is our shared heritage, handed down over innumerable generations. As a scientist studying disease, I don’t think of a person anatomically as a surgeon might, but as someone whose complex chemical reactions have gone awry, often in a multitude of small ways.
Specifically, do you ever think of ME, or the patterns and codes revealed in scientific information as it relates to disease in terms of metaphors, or images, or are the results always and only considered as numbers and deductions? Do you use any particular metaphors in terms of ME, or the DeCode study, to convey the concepts involved to people?
Like all humans, scientists need metaphors to explain and connect concepts. Of course, we need to remember the limits to every metaphor’s accuracy, lest we confuse the metaphor with the phenomenon it tries to represent.
In your conversations with people who have ME do you –or they– ever use metaphors that strike you as effectively conveying the reality of the disease. I’m thinking, in particular, of its mechanism, for instance, the unusual delays typical of PEM.
The metaphor most often used by people with ME is the broken battery that cannot be restored to full power after rest. Yet I know this metaphor falls far short of representing everyone’s lived experience - again, every metaphor has its limitations. I don’t have lived experience of ME/CFS but this metaphor has influenced how I see the DecodeME project. The power of the project is how its thousands of participants are connected, like the national grid, each contributing what little power they can from their broken batteries. Individually, each person’s energy is limited; but connected together, what great power is generated!
My own experience of ME is that, lacking a medical explanation, I must keep a watchful eye on the personal myths the illness provokes. I must make sure to balance those with the factual reality of PEM and fatigue, cause and effect. I’m aware of a motif of lack of protection in my life, for instance, to moulds that provoke a reaction, or food intolerances that ME often causes, and there is a natural state of vulnerability that associates with a disease, for instance, in the ways it impacts the immune system. At the same time, I always remind myself that I lived with a carrier of EBV, caught glandular fever, and then contracted ME, which is a classic pathway –a factual experience shared by hundreds of thousands of people around the world. Human beings are myth-making and scientific beings, and I’m interested in how those impulses relate.
The myth - a traditional story explaining a natural phenomenon - is not that far removed from the scientific hypothesis. The difference though is that the hypothesis usually has supporting evidence. Also, it’s understood that to be believed as true or false, hypotheses need thorough testing.
I ask this question because diseases which are not yet medically explained tend to be subject to metaphor, even fantasy. The Wessely School projects metaphors of anxiety onto ME and, I would argue, are only able to do so while the science of ME is incomplete. It would seem much more difficult for psychiatrists to accuse –I think that is the most accurate term– health-workers who contracted Long COVID with avoidance or anxiety, as it simply won’t ring true. And yet that metaphor, of a kind of fantasised free-floating anxiety capable of luring vulnerable people into ME, persisted for such a long time, and still influences approaches to ME and Long COVID. Metaphors can be infused with prejudice.
I’m not a clinician or a psychiatrist, but as a scientist I don’t believe a hypothesis unless it’s supported by firm evidence from well-designed tests. Explanations of health or disease are essentially limitless, so it’s always best to hold onto only those that are supported by good data. But even then, scientists shouldn’t get too attached to any explanation because - at least at some level - it’ll be wrong. As Richard Feynman said: “The thing that doesn’t fit is the thing that’s the most interesting: the part that doesn’t go according to what you expected.” To be a good scientist, it’s important to be open to the prospect of being wrong.
At the same time, Metaphors do have their uses, for instance, to picture the codes you are studying in a way non-scientists can better understand them, or to represent the community of people participating in –co-creating– this study. So, the repeat the question, I’m interested in whether you personally use metaphor as part of the way you reflect the science back to yourself, or communicate it to others, or are there any metaphors that you associate with the diseases of ME and Long COVID?
Communication is two-way. So to be understood and understand, I’ve needed to learn and recycle what metaphors and language are used by people with ME/CFS. This process helps me to update my own metaphors and then hypotheses, before we plan how then to test them. We can’t free ourselves from metaphors so instead must make best use of them despite their shortcomings.
AF: That two-way dialogue has, over decades, forced itself to the fore of culture, and that shift now includes medical science. It’s a complex subject, how to balance the specialist knowledge that comes with professional training with the democratic intellect, or life experience of ‘ordinary’ people.
As an artist involved in public projects there can be a tension between one’s training –by which I mean, accumulated experience– which allows one to devise, or recognise, the appropriate form or metaphor for a project, and the requirement to consult, engage, and, sometimes, co-create. In a parody account, ends up with kids being asked to design a new hospital, with the assistance of an artist and part-time architect. Rather than engagement focussing on physical outcome –the shape of the hospital– I find it more exciting, and effective, to share simple forms, or frames, as ways to enhance life, or as tools for thinking. My aspiration is to help kids think about what a hospital was, is, and could be, not concern themselves with the design of the roof.
Were there to be enough time, is there a parallel life practice that derives from science –something which co-created projects like DeCode could convey to ‘ordinary’ people, beyond the specific knowledge they produce? One thinks of the crisis around the idea of ‘experts’ in contemporary politics.
A two-way dialogue helps to project one person’s experience into another’s. A person explains their illness symptoms to their GP; this GP uses metaphors and commonplace words to relate what causes their symptoms; a scientist conjures words to describe this disease’s origins; the patient and the scientist share ideas, throwing out concepts like trails of spider silk to see what snags on the other’s imagination. However, invariably this projection of ideas is imperfect, never conveying one person’s thoughts fully. Between the gaps in communication many dialogues fall.
Art is one way of thinking. Medical science is another. And the child’s imagination is another. I did a project in a primary school where a kid proposed we ‘make a volcano in the playground’. Sometimes the untrained mind comes up with the most imaginative solutions. An overheard phrase or image may define an entire experience, especially working on cancer, covid, and organ donation. I will never forget someone saying, ‘the illness is an IT inside me’ –a perfect expression of the strangeness of illness. Interestingly, it tends to be the informal, off-hand, or non-art things people say that have the most profound impact, rather than what someone might produce as a ‘poem’. When they move into an art specialism it tends to constrain their imagination.
I came late to human genetics, having journeyed far from my starting place as an experimental particle physicist. So I was never taught the fundamentals of disease, and realised only recently that ‘disease’ originally meant simply “a lack of ease”. I find this interesting because ‘ease’ is ineffable and different from one person to another, whereas ‘disease’ we seek to define precisely and use it to categorise many people. Perhaps ‘disease’ like ‘ease’ is similarly ineffable?
In DeCode the science is so complex, there seems no way for participants to enter the abstract ‘room’ of the science. This isn’t a criticism: I’m seeking to understand the potential of, and the limits to, patient-led medicine.
I would be sad if we can’t explain DecodeME science to people with ME/CFS. If so, then that’d be our failing because I firmly believe that any idea – however complex or abstract – can be conveyed at least to some degree. If we can’t explain then we’d need to start again and find a metaphor that works as a common frame-of-reference. Some items in the ‘room of science’ would need to be removed, whilst adding other pieces of conceptual furniture that make better sense for people with ME/CFS: same room, same science, different metaphors.
Working on the Covid memorial I used a simple form, a sentence beginning ‘I remember’. An American artist had made a book of these as a kind of memoir. I’ll never forget someone sending in a contribution that simply said, ‘I remember Andrea’. An artist or poet – a specialist in producing expressions of memory –could never have used the form in such a direct way. The innocence in that memory liberated the form from ‘art’, into a pure expression of love and grief. It was an example of Feynman’s ‘thing that does not fit’.
When Robert Carlyle was reading the memories there were particular ‘I remembers’ which brought him to tears. Again, this wasn’t a matter of art, but what I can only define as fond human feeling, love, and grief.
While emotions can be a motivation to the scientist –a reason for seeking to discover a cure– I suspect science does not have an equivalent untrained gesture. At least, not the science you do, which is disciplined by data.
Our view on scientific truth is indeed disciplined by data. Yet scientists’ concepts and hypotheses are not completely fettered and will be altered by personal experience as much as for the next human. Data from well-designed experiments then tell us whether or not to trust our previous intuition.
In contrast, the biopsychosocial model of ME, seemed motivated by a blend of empathy and suspicion –my hypothesis– constructing a narrative that distrusts the mechanism of symptoms. It seems a field of science that holds a particular view of human nature. In their model, the absence of scientific proof justifies questioning the patient’s description –indeed, patient descriptions were framed as proof physical symptoms are not a mechanism of disease, but expressions anxiety.
If there is distrust of the mechanism of symptoms, then there is distrust of the patient’s lived experience and the patient themself. To distrust without good evidence appears unscientific to me.
In the science you practice, the absence of proof is a stimulus to experiment and, as you’ve stressed, you can’t guarantee what the outcome will be –your interpretations are limited to what the data justifies, not inflected by a view of human nature.
True, but there are often cases where experimental data can be interpreted in multiple ways. This ambiguity can stir the creative juices and yield many conjectures that might then be tested. Most often data limits the range of possible explanations but doesn’t point at ineluctable truth.
In one paper on ME you refer to genomics as a means to, ‘pin-point multiple chromosomal locations containing DNA variants that change the activity of genes—in specific cells or tissues—which thereby alter a person’s risk of ME/CFS.’ You seek the mechanism of the disease at a molecular and cellular level, detecting the pattern of its signals, comparing those to similar diseases and then, going beyond the data, argue that mapping genetic factors ‘might be expected to improve how this disorder is perceived by health professionals and by society at large.’ The work is not without ambition to influence society.
Yes, I think it matters to individuals and to society at large when we link DNA to disease. For a disease whose strap-line is “Millions Missing”, ME/CFS will become visible to many when the first link is discovered. This will be the moment when millions’ hidden experiences are translated into scientific discovery.
You honour the co-created principles which underpin the DeCode study. In part, this approach is necessary, as the science requires the involvement of large numbers of people. Morally and ethically, given the conflicts around ME and prejudices some scientists helped perpetuate, these values are imperative. They rebuild trust in science for a community that is hurt. This aspect also involves a lot of labour –including doing this interview! I appreciate the image of the network, the grid of broken batteries that can, hopefully, prove powerful in terms of the production of meaning. I’m interested in a fuller picture of what co-creation means to you personally” do you think co-creation can evolve, as a movement or idea, and what are its limits?
Co-creation of DecodeME came naturally: people with ME/CFS are experts in their disease, so it was imperative that I work with the experts. What isn’t natural is science’s hierarchical system which elevates and rewards one of a team above all others; which calls lived experience ‘subjective’ and lack of lived experience ‘objective’; and which peddles the myth that science is the work of a lone genius. Having taken this step forward, I cannot return: there is an obligation now to engage with those with lived experience in any future disease project. This has already happened again, for a Long COVID project.
Is it only appropriate for certain diseases?
I am hard-pressed to think of a disease for which Co-creation would not be obligatory. Even for incapacitating diseases there are carers who can advocate and advise.
Is it especially appropriate for genomics, where a large population must be sampled?
If you agree with "Nothing about me without me" (Valerie Billingham) then co-creation is necessary for any disease study.
Does it change the role of the medical scientist? Will a new kind of scientist emerge, with a greater emphasis on communication? You only have limited time available, so here must be some concerns here.
In its focus on the Professor as a status symbol, science has forgotten that - originally - a Professor was someone who publicly declares their beliefs. So communication was always central to a scientist’s job description. It is also one of the most rewarding and self-affirming part of this role.
If I can give an example from another field, in some estates the emergence of rewilding redefines the gamekeeper into a kind of hybrid warden, ecologist, deer cull manager. This reveals the extent to which the familiar role was defined or distorted by a blend of human desire and fashion. Our concept of nature isn’t fixed, and a consequence of rewilding has been to reassert science in terms of land management.
Fields in which different specialisms are brought into dialogue are useful as models of change. Science, being abstract, seems a ‘pure’ pursuit’, so, to reiterate the point, how might co-creation alter your profession? One thinks back to how patient-led activism has influenced medical science, in terms of AIDS. What is the furthest point along this arc which you and your colleagues can envisage?
I’d like to push back on this idea that Science is abstract, and that it is a ‘pure’ pursuit. Science has an obligation to explain matters that have meaning to those who fund it, the tax-payers. Abstracting buries meaning, actualising reveals it. And science is messy, often serendipitous, a pursuit that can hunt down a very different creature from the one expected. I see co-creation as democratic, a recognition that no single group of people have unique access to knowledge. Citizen or professional scientists are not activists - at least not in the political meaning recently given to this. Their common interest is unearthing truth; not campaigning except on the basis of facts; not reforming except when evidence demands it. How far will co-creation travel? I don’t know: DecodeME is as yet a singularity not a trend.
I have an involvement with a creative medical project called The Hologram. This is based on a concept developed in Greece during the debt crisis. Whenever a patient attends a medical centre they are seen by a psychologist, social worker, and GP who, together with the patient, create a holistic view of their health needs. Again, I think of the parallels with the hybrid role of caring for nature.
A similar approach is commonplace within medicine: a multidisciplinary team of diverse expertise is convened when difficult treatment decisions are needed. I can imagine that this only works well when there is mutual respect for others, and an openness for one’s views being wrong. But where is the patient in this? Are their experiences represented, are their views respected? Beyond narrating their symptoms, does the patient have a say on their own needs?
Patient-led medicine may change the dynamics of community care provision, but will it change medical science? Time, as they say, will tell.
In terms of the ongoing pandemic, we’ve slipped, or been shepherded, into a way of life which contradicts against medical science. A maskless society in which a virus still circulates. This is producing tens or hundreds of thousands more people with Long COVID, and will continue to do so, possibly in perpetuity. Perhaps there’s never been a period in modern history when government, or society, has gone against scientific evidence to this extent, or not since the early years of HIV. It’s going to impact on many lives.
People with Long COVID in the UK are more populous than Glasgow, Leeds or Cardiff. The city of ME/CFS is the size of Derby. Perhaps if everyone with Long COVID or ME/CFS lived in Westminster, or were male, or were in government, then the evidence would be better heeded.
Whereas the causation of ME was unclear, we know what is causing Long Covid. When you began work on ME circumstances were entirely different. You were dealing with a smaller and relatively stable community in terms of numbers. How does it feel to now be working on a disease, or family of diseases–how do you refer to ME and LC, related, overlapping, a family– which you know is growing exponentially in a catastrophic way.
Yes, the SARS-CoV-2 virus triggered Covid and then Long Covid but there are differences: most people with Long Covid recover, most with ME/CFS do not, although perhaps many who do are never counted. For society, ME/CFS and LC are catastrophic; for individuals, each is devastating. We now have vaccines for SARS-CoV-2, drugs to treat acute COVID. Because we have these things - because science made these breakthroughs - politicians have decided to look away, to forget all who have been left behind, including those with ME/CFS who are furthest back. If science also averts its gaze, then the devastation wrought will be irreparable.
When I made descriptions, a found poem using the words of people with ME to describe ME, it was necessary to reclaim the disease –or, more specifically, the symptomology– from the Wesselyian school. I don’t think it was a coincidence my project happened at the same time as DeCode. Something had shifted culturally, after decades. In simple terms, this represented a return to the reality of symptoms people experience, and forms of science appropriate to the mechanism of the disease.
If that democratic, non-professional, co-created poetic project was especially relevant to ME, I would also argue it could, ultimately, be applied to every disease–a description should exist, composed by patients, working with a trained poet-editor, which would be available as an act of witness, and lay-person’s guide for the medical profession. I wonder what that would change. Beyond the synchronous timing, do you see any relationship between that patient-led act of witness gathering 300 people’s descriptions, and your work?
I agree, and am pleased that you too talk of projects that democratise not demonise. These two events - your cauldron of people’s descriptions, and our co-created project - are like a musical counterpoint, different musical lines whose harmonies intertwine.
I’m reminded me of two stories which the poet Susan Tichy told me. Firstly, the doctor poet Robertson Davies saying that, in any consultation room, the patient’s chair should be the same as the doctors. That defines an aspiration. And secondly, she told me about a medical researcher who simulated the effect of a symptom he was studying by injecting himself, so that he would know them from within his own body.
I understand that you had a personal relationship that gave you an insight into ME and was one motivation for this project?
Yes, a good friend for over 30 years - Simon McGrath - has ME/CFS. For years, I felt powerless to help as his health declined. Then I joined the UK ME/CFS Research Collaborative from which DecodeME was born. I am acutely aware that DecodeME’s results will not yield immediate health improvements to even a single person. Yet it may yet give momentum that ultimately causes a sea change in ME/CFS treatment.
AF: My turn to push back. In my experience many people with Long COVID aren’t recovering. It will be interesting to examine the data when it’s available. For now, thanks for your generous answers, I’ll return with further questions when the study has moved forward.
There is further information on DeCode ME here.
Alec is currently writing an essay on radical rest and creative recuperation.
The reference to a paper by Chris is to this: 'Genetic risk factors of ME/CFS: a critical review’, Joshua J. Dibble1, Simon J. McGrath2 and Chris P. Ponting1.
The image is ME symptom conspectus, by Alec.