How illnesses are affected by your psychologyby Marc Wilson
When you're in the throes of sickness, “it’s all in your head” is the last thing you want to hear, but there's something to it.
“It’s all in your head” is a phrase that many of us, in the throes of malaise, similarly dislike hearing. Although some ailments are, by definition, in our head, many clearly physical illnesses can also be made better or worse by what’s going on in our head. For example, reviews of many studies show that people diagnosed with multiple sclerosis (MS) have consistently poorer outcomes if they not only feel more stressed, but also deal with their stress and condition through “maladaptive emotion-focused” coping strategies, such as wishful thinking or pretending it’s not happening.
Asthmatics who feel they have a sense of control or influence over their recovery are more likely to effectively manage their symptoms. Similarly, feeling in control is likely to lead to better management of diabetes, but connecting more “symptoms” to diabetes (or MS) is associated with poorer outcomes.
It’s kind of logical that when we’re exposed to a health threat, we try to make sense of it. One way we do this is by constructing a way to understand it, which can vary from person to person and be influenced by the information we see and hear. If we believe an illness is completely uncontrollable, we’re going to behave differently to how we might if we feel otherwise. If we worry about uncertainty, then we’re more likely to become anxious and depressed.
In short, there are very few (if any) illnesses that are not affected by what’s going on in our head.
This brings me to what has been called Tapanui flu, myalgic encephalomyelitis or post-viral syndrome, but is currently called chronic fatigue syndrome (CFS). As the name suggests, the main symptom is hugely debilitating fatigue. According to Healthnavigator.org.nz, the syndrome affects up to 20,000 New Zealanders. We don’t know exactly what’s going on with CFS, but we do know sufferers have abnormal immune systems. There is no treatment for CFS, but healthnavigator lists a few things that may help, including reducing stress, getting adequate sleep and nutrition and practising mindfulness meditation.
As with diabetes, MS or even asthma, there’s reason to believe that how you think affects the way you experience CFS and, perhaps, even whether you develop it at all.
As the label “post-viral syndrome” suggests, one pathway to CFS is through developing something else, and glandular fever gets top billing here. So, if we want to find out what in-the-head factors might be associated with developing CFS, one way might be through seeing who develops it after a bout of glandular fever.
Enter University of Auckland researcher and lecturer Rona Moss-Morris in the mid-2000s, who, incidentally, was also involved in the reviews of asthma, diabetes and MS I’ve described here. She and her colleagues followed more than 200 people diagnosed with glandular fever, also known as the kissing disease, over six months. Having anxiety and depression meant a 20% greater likelihood of developing CFS, whereas perfectionism and all-or-nothing responses to illness (such as burning yourself out by overdoing things) contributed 10% and 14% more risk to future CFS.
More recently, Moss-Morris, now a professor at the Institute of Psychiatry in South London, and others have also shown that being able to change the way you think about your symptoms results in a 15% improvement in quality of life six months after a CFS diagnosis.
This does not mean CFS is all in the head. That’s like saying flu isn’t real. How we think about having CFS, however, just might be.
This article was first published in the May 11, 2019 issue of the New Zealand Listener.
I read with concern my colleague Marc Wilson’s May 11 Psychology column suggesting myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) might be caused by “dysfunctional” thoughts and feelings. As a researcher in this area, I have a different perspective.
Psychology research loves a vacuum. ME/CFS, whose cause is still unclear, is the perfect candidate for our musings. Researchers have eagerly set out to show that certain undesirable personality traits, thinking patterns or behaviours might cause or perpetuate the illness. This research is easy to conduct: find a small group of ME/CFS patients and a healthy comparison group and ask them to complete a heap of questionnaires.
But there are two major problems with this approach. One is that the findings are not consistent across studies. One small study, mentioned in Wilson’s article, found that ME/CFS patients endorsed more items on a “perfectionism” questionnaire than healthy controls, but another larger study failed to replicate this finding. Replication is the cornerstone of good science.
Another problem with this research is that it often confuses cause and effect. Would it surprise any of us to learn that people with a severe chronic illness might feel despair about their current situation or future possibilities, or experience anxiety about their health? No, of course not. These are most likely consequences of having an illness, not causes.
Mental health professionals have been eager to promote their own brands of “treatment” for ME/CFS. As Wilson notes, some studies make bold claims: one recent one said that therapy designed to change people’s beliefs about their illness and symptoms could cure more than a fifth of patients. A similar result was claimed for a treatment that encouraged them to gradually increase their activity levels.
However, as an article of which I was an author, published in March last year in BMC Psychology, shows, these claims don’t stack up. Some patients report feeling a little better after the treatments, but the effect is short-lived, and the treatments do not help them to return to work or to their other previous activities.
There is a place for psychology in the management of ME/CFS. Patients are struggling with terrible adversity, and are often grieving the loss of their past lives. Psychologists can make a difference.
Carolyn Wilshire, School of Psychology, Victoria University of Wellington.
Marc Wilson responds: I would be concerned myself if I (or, indeed, others) claimed that “ME/CFS may be caused by ‘dysfunctional’ thoughts”. As my column noted, we’re not certain what causes CFS, but we can be pretty sure it has physical contributors. The point I’ve tried to make is that how we think, and how we think about illness, can be shown to relate to (which is not the same as saying “cause”) both physical and psychological outcomes associated with many illnesses. This point has been made by experienced folk in the health psychology field. Until we have evidence that CFS-related outcomes, potentially alone among ailments, have absolutely no psychological element, we should continue to explore this avenue.
Studies claiming to find evidence for poor thinking causing ME/CFS tend to have a morass of design problems, including small sample sizes (as was the case with the Moss-Morris paper quoted in Marc Wilson’s column, which had just 17 people with CFS) and p-hacking (selective use of data). More robust studies fail to find such evidence.
Thankfully, most people no longer believe that neurotic personalities predispose women to breast cancer, although this had been widely held to be true. It is time to similarly move on from victim-blaming ideas related to ME/CFS.
Maree Candish (Christchurch).
Marc Wilson makes a trivial point about attitudes towards illness (Psychology, May 11). He states that our beliefs about the level of control we have over an illness influence the likelihood of us becoming anxious or depressed.
In fact, illnesses such as chronic fatigue syndrome (CFS) truly are out of our control when we have no effective ways to treat them.
The Open Medicine Foundation website shows a sample of the breadth of CFS research, and none is being done on any mental-health-based causes or treatments.
That’s because this theory has been abandoned by almost all who work in the field.
Sophie Craig (Hillcrest, Auckland).
We at The Associated New Zealand ME Society, the national body of ME/CFS support groups throughout New Zealand, would like to draw your attention to our recent media release, as well as a document regarding the new guidelines for GPs that have been sent out through the Royal New Zealand College of General Practitioners.
ME/CFS has long ago been proven to be a physical rather than a psychological illness and is classified by the World Health Organisation as a neurological disorder. Scientific research into this illness is multidisciplinary and has been aided by recent advances in technology, confirming widespread brain inflammation and other measurable abnormalities. A blood biomarker for early diagnosis is near at hand.
We welcome any questions that the Listener or its readers may have and can provide links to the documents referred to above. Please contact our national office at ANZMES at 03 471 6203, firstname.lastname@example.org, or visit www.anzmes.org.nz.
George Connolly, ANZMES President.
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