The real-life consequences of viewing ME/CFS as psychosomatic

No, we aren’t stigmatising mental illness, the real-life consequences of viewing ME/CFS as psychosomatic are particularly heinous

Hi friend, how is everything?

In case you haven’t read the About page, my name is Madelleine and I’m mostly bedbound due to severe ME/CFS. I’ve been harmed by medical gaslighting and by doctors and authorities who viewed ME/CFS as a psychosomatic illness. This is what today’s post is about. It is a deeply traumatic and sensitive topic for a lot of people living with ME/CFS (and now also Long Covid) so please continue to be thoughtful and respectful in the comments (you always are!). I want to ensure this is a safe space for all. If you, as someone living with ME/CFS see that I’ve forgotten to add certain consequences of ME/CFS being viewed as psychosomatic, then let me know and I’ll add it right away. Let’s begin…

When I tell people who don’t know the history and stigma of ME/CFS that ME is not a psychological illness and that this is important for patients, the response I get is often: “But there is nothing wrong with an illness being psychological, now you’re stigmatising mental illness.” Another response is also: “But it doesn’t matter whether we classify an illness as psychological or physical, all illness should be treated, regardless.” There’s even been misguided articles in one Danish national newspaper (Weekendavisen) about how ME/CFS patients stigmatise mental health because we don’t want our illness to be percieved as psychological.

I completely understand the knee-jerk reaction, especially because mental and psychiatric illness is deeply stigmatised (and yes, one is not more or less real than the other and one is not ‘better’ than the other), but perceiving ME/CFS as psychological in nature has real-life consequences for patients and these consequences are particularly heinous. 

First of all, ME/CFS is a serious, chronic, complex, and systemic disease associated with neurological, immunological, autonomic, and energy metabolism dysfunction (Institute of Medicine, 2015). It is a biological illness. It disproportionately affects women — newest statistics from the DecodeME study suggest more than 80% are women, but there could be problems with men being underdiagnosed. You can read more about what it’s like to live with severe ME/CFS here.

 However, despite more and more biological findings, psychologising theories have been rife. Psychologisation refers to the tendency to attribute the cause of physical health issues primarily to psychological factors, such as certain emotions, personality types or mental states, rather than considering potential underlying medical causes.

Historically (and presently), medical researchers and clinicians have been more likely to attribute emotional or social factors to the cause of women’s physical symptoms. The consequence of this is that:

“Men’s illnesses are investigated and treated more extensively than are those of women, despite the same severity of symptoms, in a variety of conditions. Physicians are more likely to interpret symptoms as psychosocial, diagnose nonspecific symptoms, and prescribe psychoactive drugs with their female patients than with their male patients.”¹

(This actually has consequences for how men’s mental health is treated, but that’s for another post).

The most widespread of the psychologising theories – the one that forms the basis of the Danish Health Authority's ME recommendations (despite political opposition to this) – is that patients are maintained in and worsen their illness due to a wrong perception of illness and worry about illness. They call this Bodily Distress Syndrome and lump a whole lot of illnesses and conditions that disproportionately affect women and that historically have been underfunded (like fibromyalgia, whiplash, MCS, IBS etc.) under this diagnosis.

By believing that the disease is purely biological, the patient makes themselves sicker than they really are, according to this theory. Added to this is the idea that the patients are deconditioned and have a 'fear of activity'. This can, according to this theory, be remedied by graded exercise, where the patient gradually increases their activity level, and cognitive therapy, where the patient learns to accept their symptoms and work on their so called fear of activity.

The Danish Health Authority therefore views ME as a type of distress that is triggered by e.g. an infection, childhood or other trauma or other psychosocial stressors. The syndrome is then perpetuated and worsened by everything from perception of illness, worry about illness, dysfunctional cognitions, dysfunctional illness behaviour, central nervous system sensitisation, social problems and health anxiety to certain personality traits and behaviours.

The Danish Health Authorities do not include ME-specific biomedical research (such as the research on post exertional malaise or PEM) and findings in their recommendations. 

This perception has serious consequences. 

The first six years of being ill I was told by both doctors and alternative practitioners that there was nothing physcially wrong with me, that I was burnt out and stressed and that I was deconditioned. A physiotherapist diagnosed me as deconditioned as I was losing muscle mass, despite a rigorous yoga practice that consistently made me more sick.

I was prescribed graded exercise therapy and alternative practitioners suggested various forms of healing. I got sicker and sicker. The last thing I did was sit on a pilates ball for 30 seconds and bounce gently up and down. I was to increase this by 5 seconds a day. I got so sick after the first 30 seconds that I never recovered. My health continued to deteriorate and today I’m mostly bedbound.

Fast forward many years later: During a hospital visit in 2020, I was shamed and yelled at when I asked for help to dim the light and sound. I was placed in a two-person ward and despite me asking, my co-patient was not told to put on headphones when listening to TV or the radio and she talked on the phone for hours. While this may simply seem slightly annoying to a non-ill person, to someone with ME/CFS who has a hypersensitive nervous system, this is torture. I cannot express it any more diplomatically. 

I was also forced to walk even though I said I couldn't. After a few steps, I fell over and lay in the middle of the floor in the white terry underpants the hospital provides, crying and whisper-shouting 'I can't...I can't'.

Never have I experienced anything more humiliating. I found that my voice had no value.

Dismissing our voices is an intrinsic factor in the psychosomatic perception of ME/CFS as part of the theory states that our perception of our illness and therefore what we believe is happening to our bodies is wrong. Our voices and thereby autonomy are annihilated in the psychosomatic perception of ME.

I know of a lot of other patients who’ve had similar experiences, some a lot more heinous than mine. I lost more than half of my function after that hospital visit. I was able to walk 800 steps a day when I went there, when I got back I was down to 300 a day and I never recovered. Because of the psychological perception of ME/CFS my physical symptoms and lack of physical function were not taken seriously.

Other consequences include not getting the right number of care hours or the right mobility aids because the official recommendation in Denmark is graded exercise therapy (GET), which means doing a little more than you are able to do in order to get better. GET has caused serious harm to more than 50% of ME/CFS patients, including myself, according to numerous large patient surveys.

Without proper mobility aids or care hours ME patients risk overexerting themselves and getting worse. Others experience not being able to get their disability pensions without having to go through harmful treatments like graded exercise therapy. Many become sicker as a consequence.

It is also difficult for us to find adequate help for our mental health. We need to assess whether the psychologist adheres to the psychosomatic perception or not (and they don’t always know themselves, this is sometimes unconscious). If they do, we risk further trauma as our mental health is made to blame for our illness. I have experienced therapists who blamed my illness on toxic friendships and other mental health issues. This means we can’t be fully open about our mental health issues. 

I was also refused reimbursements for my medical costs because according to official advice it can be dangerous to give medical symptomatic relief to ME patients as it perpetuates their illness. This is what social services wrote in my case file, it’s not something I’m making up. The idea in the psychosomatic view is that giving medication to ME patients is dangerous because then they really do think they’re biologically ill and thereby become more ill. But I’ve only experienced improvement with medication, in fact it’s why I can write and speak today. I’m highly dependent on medication to be able to speak and live somewhat decently in my body.

A particularly tortuous consequence is when people are admitted to or sectioned into psychiatric care. 

In November, a Danish woman with very severe ME (100% bed bound and very ill) was sectioned into psychiatric care (there were actually two women, but I don’t know the details of the other). One of the women writes on Facebook how she was exposed to light, sound and other sensory inputs that are excruciatingly painful, and the staff refused to feed her or help her to elevate her bed, something she is not able to do on her own as she is too weak. She also writes how her doctor had told her she had a delusional perception of reality because she was lying in a dark room with a sleeping mask and earplugs and couldn’t feed herself. But we are not delusional, our bodies are sick.

One of the first people to be sectioned (police came to take her away) in Denmark was Karina Hansen who came home after nearly four years unable to speak and with severe PTSD. Her mother was given a Münchhausen by proxy diagnosis, which means the doctors thought the mother was making her daughter sick (she wasn’t). This has happened to numerous patients in both Denmark and other countries as well — and it’s still happening.

Taking a psychiatric/psychosomatic approach to ME/CFS means that the patient needs to be exposed to sensory stimuli as well as do more and more things themselves in a misinformed effort to remobilise them. 

But for ME patients this only makes us worse and with every exertion we risk losing our function further and getting sicker. While I myself have never been admitted to psychiatric care, I can say for certain that being exposed to sensory stimuli and being forced to do more than within our comfort zone and not be given the help we need is torture and abuse.

If you were ever wondering why a person living with ME seems particularly wound up or angry when people don’t understand why perception matters, then this is why.

Over to you

Have you had your physical symptoms/illness psychologised? If so, what were the real-life consequences for you?

Have you experienced biological reductionism when it came to mental health issues or mental illness, when psychosocial, environmental or social justice issues were more pertinent? What were the real-life consequences for you? (I’ve had this happen and it caused me a lot of shame as I felt my problems weren’t legitimate.)

Have you been misunderstood in the medical setting? Have certain causes been attributed your illness/condition when this was not the case at all? What were the real-life consequences for you?

Do you have questions about the history or stigma of ME/CFS?

One more thing…

I have a new thing for you! Watch out for your inbox on Friday, I’m SO excited to share this new thing with you.

1. Andersson, J., Salander, P., & Hamberg, K. (2013). Using patients' narratives to reveal gender stereotypes among medical students. Academic medicine : journal of the Association of American Medical Colleges, 88(7), 1015–1021. https://doi.org/10.1097/acm.0b013e318295b3fe