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ME, Long Covid, and the History of Medical Stigma (Transcript)

Here is a transcript of my recent podcast with the Norwegian ME Association. In the interview, we discuss the medical stigma where post-viral illnesses, such as ME and Long COVID, are falsely characterised as ‘psychological’ due to poorly grounded stereotyping. The discussion touches on how medical opinion has become intertwined with wider political and economic concerns, and the implications of seeing people’s value solely in terms of their ability to be economically ‘productive’. Drawing on my latest book, I argue that history can be our guide in helping us to explain why Long Covid and ME are considered, by some, to be such challenging diagnoses.

The interviewer is Margrethe Gustavsen, Communications Officer of Norges ME Forening, the Norwegian ME Association. The transcript has been lightly edited for clarity and readability.

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Margrethe Gustavsen: You’re now listening to Living with ME, a podcast from the Norwegian ME Association. ME is a disease that affects thousands of people in different ways. The patients live with various grades of exhaustion and pain, and experience losing their dreams, sense of future, and relationships. On top of that, many people with ME experience a lot of mistrust from society. In this episode, we are fortunate to talk with Dr. Brian M. Hughes. He is a specialist in stress psychophysiology, professor of psychology at the University of Galway in Ireland, and one of the most experienced and honoured scientists on ME both in Ireland and globally. His new book is out now, A Conceptual History of Psychology: The Mind Through Time. Welcome to the podcast, Brian.

Brian Hughes: Thank you.

Margrethe: What are the greatest challenges ME patients face in today’s society?

Brian: Well, ME is a very complex and debilitating disease, a very complicated illness, and the problems that people face are many. We would often focus on the physical problems, and everybody who has the condition is familiar with the symptoms and the physical experience. But I also think that, unique among conditions, ME is a social condition. There are social problems that people face. Not only are people often isolated because they’re debilitated, and possibly housebound, but there’s also undeniably a sense of stigma associated with the illness, and that has been created by society at large. People with ME face a huge challenge in cultivating trust from their social networks and even from their doctors at times. And there are just so many ways in which people are characterised as problem patients or troublesome people, rather than as people who have a physical illness. On many occasions, people’s symptoms are sometimes disbelieved. I think more recently, we see some of this controversy playing out with other post-viral conditions, most notably, of course, COVID and Long COVID — where patients present to doctors with lingering symptoms and some of the similar reactions occur. The doctor doesn’t believe that the symptoms are really physical, considers the person to be suffering from anxiety, and directs them to psychotherapy instead of something more suitable. I think this is a very good example of history repeating itself in this respect.

Margrethe: Why do you think people are sceptical?

Brian: Well, in the case of ME, there’s a long history of not believing the types of symptoms that people have in the first instance. There’s a strong belief in some countries that ME is a form of chronic fatigue, and that that, in itself, is a form of behaviour or attitude rather than a physical state. Some of this relates historically to the way in which women, in particular, were construed by medicine — and whether or not their symptoms were reliable or trustworthy — so the notion of hysterical illness comes into play. And some of it relates to the types of symptoms people often report which are, in a way, invisible symptoms. People will say that they suffer from certain types of pain, or certain types of sensory debilitation, or certain types of energy state. To an onlooker, there’s no way of measuring these. There’s no way of confirming these, like a blood test or some kind of quantifiable measure. Now, of course, people with ME have many, many physical ailments. But some of the core symptoms that people talk about, or are associated with the condition, are often those sort of intangible symptoms. That makes it harder for people to understand and therefore to believe.

We do see this in the history of medicine more generally, where certain kinds of conditions, before they are properly understood by biology, are assumed — therefore — to be psychological. One classic example of this relates to stomach ulcers. People believed that stomach ulcers were caused by stress for very, very many years. If a patient presented to a doctor with a stomach ulcer, the doctor would often advise them to reduce their stress and to focus on their psychology in order to recover. But then, of course, in the 1990s, we discovered that there was a particular bacteria that was responsible for virtually all stomach ulcers, or certainly 90% of them, which meant that the psychology theory was clearly false. The biological reality was very demonstrable only when we discovered the bacteria; before this, it was a mystery. So in historical terms in medicine, we tend to think of things we can’t explain as psychological — until we have a biological method for understanding it and testing for it.

Margrethe: Can you tell us more about these theories? And can you give some examples?

Brian: Yes. Some other historical examples would include things like migraine. Migraine, historically, is a profound pain. It’s often presented in women patients. And historically, throughout the 20th century, there emerged a psychological theory that migraine was associated with traits like perfectionism, or being ambitious — that for women who wanted to take part in the economy and work in high powered jobs, this level of ambition and perfectionism was contributing to risk of migraine. And that, actually, the cure for migraine therefore was an easier life, or a more domesticated life: get out of the office, get out of the workplace, and stay at home. That was the advice to women who had migraines, right throughout the 1930s and 40s and up to the 1970s. Now this wasn’t the universal advice, but there were many, many papers written in psychology and psychiatry journals, theorising that perfectionism and ambition were predictors of migraine and that there was a ‘migraine personality’ type. There was also a thread through some of this reasoning that associated these illnesses with with people’s sex lives, such that women who had migraine were people who were not interested in sex, and therefore there was another problem there. There was a lot of stigmatising and a lot of bundling of concepts, but migraine was a classic example of a condition that was considered to be psychosomatic for very many years. It was intertwined with the idea that women in particular were trying to do too much. Social conservative norms would say that the best thing for women would be to stay at home — and medicine was agreeing with them because of the psychosomatic consequences.

I can give you a second example as well. In the 1980s, AIDS (and what we now know to be HIV) first emerged and became commonly recognised. For people who weren’t alive at the time, it’s hard to imagine this now, but for a long time AIDS was a mystery illness. It wasn’t clear what was causing illness. What was most obvious to people in general were the types of patients who would end up with AIDS. The gay community, people who used intravenous drugs, and haemophiliacs — these were the types of people who were getting AIDS. Before we understood that there was a virus involved, it was a medical mystery to some extent. Many doctors would have assumed there must be some virus there, and this is why science went looking for the virus, but other medical doctors began to think that maybe there were some other causes. And so there were a few psychology-types, psychoanalysts in particular, who put forward a different type of theory of how AIDS was caused.

They concluded that it had something to do with homosexuality, something to do with people’s psychological experience of life. They pointed out that in the 1980s, there was a rise of conservatism in many Western countries — Ronald Reagan was elected President of the United States, for example — and that this heralded an era of guilt for people who were gay, because there was an increase in homophobia in general society, or at least an increase in social conservatism. And so a theory emerged that maybe AIDS was the result of that guilt: people were turning aggression towards themselves because they were guilty and ashamed of being gay. Of course, that theory seems preposterous to us today. But it was a published theory, and it was read and understood and to some extent discussed. But of course, when the HIV virus was discovered, that theory just disappeared. Again, it’s another example of how when a medical mystery arises, psychologists come forward and say, “We can understand. It’s psychological, not physical.” That’s not very logical, but it is a problem that arises repeatedly through the history of medicine.

Margrethe: Like ME, these diseases more often affect women or other marginalised people. Do you think we resort to these explanations easier when the sick aren’t white heterosexual men?

Brian: I think there is an interesting issue there and an interesting problem for medicine, not just historically but in contemporary practice too. We know that in a lot of countries, and Western countries in particular, people from ethnic minorities are more likely, statistically speaking, to be referred for psychiatric consultation or to appear in the psychiatric services. There are many people who feel this is evidence that medicine tends to consider the majority population, or the privileged population, as ‘normal’, and everything else as ‘deviating’ from normal. But this might not be the case at all. For example, in some countries in Europe, being emotionally expressive is very important. It’s very ‘ordinary’. So if somebody is upset, it is considered highly appropriate for them to exhibit this distress publicly. But in other European countries, it is considered more appropriate to stay quiet and reserved, and to contain your stress. So sometimes how we express our emotions differs depending on the culture. When people move around from one country to another, from one society to another, they can sometimes behave in ways that don’t conform to the wider culture — but that is not because of any mental problem, it’s just a cultural difference.

But medicine seems to be poor at understanding that type of issue. We end up with different sorts of diagnostic conclusions being drawn for different groups in society, without taking account of the fact that there’s maybe a wider cultural context. The same thing happens with women’s health. A lot of the research that’s been done on human health is done on men. If you take the example of cardiovascular disease, which is a major illness that contributes to mortality around the world — it’s the leading cause of premature death in the world — much of the research is done on men. And so much of the medical understanding is based on the research that has been done on men. We don’t therefore see the same type of medicine being applied to women as to men. One of the consequences of that, for example, is if a woman appears before a primary care physician with chest pain, she is a lot less likely to be referred to a cardiologist than a man is, even though chest pain in women is just as dangerous as chest pain in men. Statistically, we see that when men have chest pain, they get sent to a cardiologist, whereas when women present with chest pain, they’re more likely to be sent to a psychologist or a psychiatrist or something else. This has real consequences for people’s well being. There seems to be a stereotype in play: that if men have pain, it must be serious; whereas if women have pain, you know, there might be some other explanation. It could be anxiety.

Also in cardiovascular medicine, we even see that when a person collapses on the street, if they’re a man, they’re far more likely to get CPR than if they’re a woman. The data on this have been published in the United States just a couple of years ago. I think you’re something like twice as likely to get CPR if you’re a man than if you’re a woman. So it’s not just medicine. Wider society has this attitude too: if men are sick, it must be serious, whereas if women are sick, it could be just an overreaction to something that’s causing them anxiety.

There is a gender dimension to this. As you suggest, it probably relates more to whoever are the powerful groups in society. The privileged groups in society. They’re seen as ‘normal’, and everybody else is seen as ‘deviant’. In medical terms, therefore, people are more likely to be treated differently if they come from some kind of minority group, including minorities in terms of privilege or social privilege, such as women patients.

Margrethe: Would you say that how politicians and the government present the issue of ME is important? And why is ME not a high priority on a political level?

Brian: Yeah, absolutely. I think there is a huge governmental, or at least bureaucratic, dimension to this. How we organise civic society is important. People with disabilities, or chronic illnesses in general, often find themselves marginalised in today’s society. People with ME are a very, very good example of that. You can argue this point, and it might be true or it might not be true, but there seems to be a very clear picture that people with ME are seen as by many others in society as as having a problematic existence, a problem that’s almost unsolvable in some respects.

There are real threats to wider society from these types of situations. People don’t always think these things through, but they are part of the story. One is the perception that anyone with a chronic illness, such as ME, needs to be paid for. Their life needs to be paid for by others. So people are often perceived as being a drain on resources: they cannot pay for themselves, they require medical care, and so someone has to pay for that. The taxpayer and the government have to pay for that. They may have to pay for social welfare payments or disability payments, or they may have to pay for medical care needs. And no government is happy about spending lots of money on things that it can avoid spending money on. So there seems to be some kind of tension in these types of debates, to say that ME isn’t a real illness and so you shouldn’t spend money on it. That’s part of the explanation.

A good example is COVID, and to compare to the question of Long COVID. People who warn about Long COVID are often accused of overreacting. Governments are often in denial about the risk of Long COVID, or about the scale of Long COVID. And again — maybe people in the post-COVID world will now understand this better — it’s not just the cost of medical care and disability payments, there’s also the real question that if lots of people are going to end up with Long COVID, should we have more restrictions? Should we have more lockdowns? I think governments around the world are very reluctant to have more lockdowns. So there’s a kind of incentive in play: if there’s any doubt at all about Long COVID, then that will be seized upon as a reason to ignore it. Therefore, Long COVID isn’t seen as being as serious a problem as people say it is, almost because people — governments — go into a state of denial. They don’t want to think about having another lockdown, never mind thinking about the costs associated with paying for, say, ten per cent of the population to be on disability payments.

But even then, in a more abstract sense, if you look at the historical trend — this idea that certain people in society are not ‘productive’, it’s a modern idea. For many centuries, people with all types of diversity lived in regular society. It’s really only since the Industrial Revolution that we’ve made this separation between those who are ‘economically productive’ and those who are not. Because of the capitalist or commercial dimension to society that has come with the Industrial Revolution, we now have two types of people: the people who contribute, and the people who take out of society. Anyone with a disability or chronic illness is in the second category. Government policy and social attitudes are affected by this idea: that people with chronic illnesses are not economically productive and therefore they’re a problem. All of this type of thinking creates a sense of stigma around certain types of illnesses — and certain types of people.

Margrethe: So how do you see the doctor’s role in this landscape?

Brian: The role of doctors is certainly part of the question and part of the challenge. It takes us into some overlapping, but slightly separate, territories. In some countries, such as my neighbours in the UK, there has been a longstanding relationship between the medical profession and systems that evaluate members of the public in terms of their social welfare needs, such as disability payments. If a person wishes to have a disability payment because they’re chronically ill, they have to be medically assessed before this can happen. The relevant government department for controlling social welfare payments, pensions, and such things, were responsible for funding research into ME to try to find out whether it was a psychological illness or a physical illness, or whether a psychological treatment will be enough, as opposed to serious medical treatment. So this interaction between medical decisions and financial decisions is a reality, and doctors are involved in that overall system to some extent. Doctors cannot simply say that they are medical specialists and have nothing to do with policy, or with capitalism, or with costs or taxation. Doctors, and the medical profession more broadly, are intrinsic to the idea of evaluating people in terms of their capacity to be economically productive.

In some countries, doctors have become vocal in discussing ME, and similar conditions, as an example of malingering — the idea that people are engaged in behaviours, maybe at an unconscious level, that prevent them from working because they don’t want to work, because they have some psychological problem that needs to be solved using psychological therapies. So the idea of medical diagnoses and medical decision-making certainly comes into the discussion, and it overlaps with the wider social attitudes.

But more specifically, most medical doctors I know are very sympathetic to patients with ME. There are so many illnesses for doctors to specialise in that the number who specialise in ME is very, very small. It just happens to be the case that some of those who specialise in ME have a particularly negative attitude about the condition. Most doctors, though, who encounter patients with ME, are sympathetic. They just want to know what to do. Sometimes, in psychology, we discuss the idea of a ‘primacy effect’: that the first thing you hear is what sticks in your mind. And the first thing many doctors have heard is that ME is a psychological condition. It can be difficult to unpick that from the minds of doctors, because this is their stereotype. This is what they have heard. But thankfully, the research picture is quite clear now: ME is a very complex neurological condition, and psychological therapies in particular are not that effective. And of course, in the UK we recently had new regulations published to explain to the medical profession what ME is and how it can best be treated. So maybe we will see some shift in the picture in the future as a result of the emerging science.

Margrethe: So is there a way out of this for people with me? And how can it happen?

Brian: I think there is a positive future, relatively speaking. I think this for a few reasons. One is, as a psychologist, I’m very well aware that many psychologists and mental health professionals are concerned about ‘good’ and ‘bad’ science and especially the problem of bad science. There has never been as much attention given to the question of error in psychology. I think psychologists, as a profession, have changed their minds on ME; it’s a small number of predominantly older psychologists who are stuck in the old way of thinking. But now there is much greater awareness, and much greater understanding, that just because some senior psychologists believe something doesn’t make it true. The question of evidence — and of the quality of research evidence — is hugely important to psychologists and mental health professionals. So I see that as a big shift in my field that is very much in a favourable direction in terms of how seriously ME patients are taken.

I also think that the way in which Long COVID has come into the discussion is something that helps ME patients. ME used to be seen as a somewhat ‘invisible’ illness. But one thing we can say about COVID, after the global pandemic, is that it certainly isn’t an invisible illness. COVID is a very visible illness. It has disrupted the whole world, for a number of years. The idea that Long COVID exists is widely understood, and is something that people talk about all over the world. That level of attention and focus on the prospect of such a condition is something that can only help people with ME to be heard and to be recognised, because the Long COVID concept is something that has penetrated society and culture. So I think this opens the door for people with ME to say, “This is the life we have. This is the type of condition we have. We’re not alone.” If people take Long COVID, seriously, they have to take ME seriously too.

And related to that, one of the big features of a lot of COVID and Long COVID is that it has affected so many people who are medical frontline workers. Because of the nature of the pandemic, so many people were exposed to COVID infection through their work. These are people who have good medical training, whether they are medical doctors or whether they are other people who work in the healthcare system. So we not only have lots of people who have personal experience of long COVID, we have lots of doctors who have personal experience of Long COVID. And lots of medical scientists who have personal experience of Long COVID. They certainly understand that this isn’t a psychological condition that they have. That understanding of the reality of post-viral conditions like ME and Long COVID is now inside the medical bubble, as opposed to outside in wider society in the form of an ‘invisible’ illness. I am optimistic that this level of exposure — this level of understanding in wider society and within the medical and healthcare professions — is something that has educated people about the reality of ME, as well as the reality of Long COVID. So I’m optimistic in that sense.

I suppose, as an academic, I have to balance that to some extent. While I’m optimistic that things are becoming more sophisticated and more logical as we go forward, we also see from history that things don’t always rest on logic and sophistication. There can be pushback, and there can be denial. I think we all recognise after the pandemic that around the world, lots of people just want to forget about the pandemic. They want to move on. They want to go back to what life was like before. There is always that resistance to new knowledge. People sometimes are threatened by it. And maybe there are certain vested interests who just want things to be back the way they were before.

There will be some resistance to new ideas and new science. This is always the way. But we learn from history that even though that resistance comes forward, it is always overcome.

Science always progresses in the end.

Margrethe: Thank you for a very interesting talk and new perspectives, Brian!

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Living with ME (‘Leve med ME’) is a podcast produced by Norges ME Forening, the Norwegian ME Association. You can find more episodes here.

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