by Sasha Nimmo

Macquarie University are recruiting people with chronic fatigue syndrome, fibromyalgia, gastrointestinal disorders and multiple chemical sensitivity for a study measuring somatic symptoms, hypochondria, anxiety and depression, catastophising and co-morbid diseases.  The study was approved by the University’s ethics department.

Psychiatrists at Macquarie University in Sydney sought 1000 people for the one-year longitudinal study.

The study is ‘The mind-body relationship of common physical symptoms in the community’, or its scientific title is ‘Epidemiology of Multiple Somatic Symptoms in the community, and its association with illness related cognitions’.

The researchers classify chronic fatigue syndrome, fibromyalgia, gastrointestinal disorders and multiple chemical sensitivity with the mental disorder – somatization, which is ‘unconscious process by which psychological distress is expressed as physical symptoms’.

“Somatization Disorder (Diagnostic and Statistical Manual of Mental Disorders-V), fibromyalgia, chronic fatigue syndrome, functional Gastrointestinal disorders and multiple chemical sensitivity have all been associated with the subjective reporting of these symptoms,” states the trial’s registration.

ME Australia put questions to the researchers about what criteria is uses to diagnose chronic fatigue syndrome; what literature review had they done; whether they consulted any patient organisations; and asked why the study aims to “suggest potential psychosocial aetiologies”, why would they be looking for these instead of physical evidence?

The questions were unanswered, instead this was the response from David McNaughton from the Department of Psychology, Macquarie University:

We think that you have misunderstood our thinking and approach. Our group is interested in understanding mind-body interactions but we do not make the mistake of confusing association with causation. While we believe there is good evidence that psychological traits are associated with a number of organic and functional conditions, this does mean that we necessarily believe they are solely attributed to the disease aetiology. Chronic fatigue syndrome (and other disorders) are used to give context when investigating the relationship between psychological traits and physical symptoms. The current study does not purport to investigate individual disorders, such as Chronic Fatigue Syndrome, because of the complex biological components which we agree are important in the disease development.

The trial registration states “multiple somatic symptoms (MSS) in the context of somatization, remains one of the most common psychiatric disorders in the community.”

“The present study seeks to address the following aims:
1. To determine the incidence and prevalence of MSS in an Australian community setting and its relationship with co-morbid chronic diseases, specific illness related cognitions and psychological distress.
2. To determine the stability of MSS over the course of 1 year.
3. To suggest potential psychosocial aetiologies for MSS by studying mind-body and body-mind interactions in these conditions.”

The Australian government recognises multiple chemical sensitivity (MCS) as “a condition presenting as a complex array of symptoms linked to low level exposure to chemicals. Those with MCS often face situations where their symptoms may be poorly understood or misdiagnosed, and may be provided with health care that is less than optimal.”

The Allergy and Environmental Sensitivity Support and Research Association say research shows 6.5% of Australians have medically diagnosed MCS and 18.9% report chemical sensitivity (being unusually sensitive to everyday chemicals and chemically formulated products). Around three-quarters of these people have asthma, while others suffer migraines, for example.

Emerge Australia was not approached by Macquarie University to consult or assist with the study.

The United Kingdom’s ME Association and Lady Mar have previously raised concerns about including ME and chronic fatigue syndrome in ‘medically unexplained symptoms’ (MUS) and in “some instances the treatments were wrong, short-lived and potentially damaging to health“.

The PACE trial demonstrated the dangers of treating biological diseases as psychological, leading to ineffective and possible harmful treatments.

The Journal of Health Psychology published a special issue looking at a large study of psychological treatment – cognitive behavioural therapy (CBT) –  for chronic fatigue syndrome. Laws 2017 writes:

Whether CBT reduces, increases or has no impact on distress is debatable. Although NICE advocate CBT to reduce distress in CFS/ME, their own evidence base – derived from the Cochrane meta-analyses of RCT data – reports no distress reduction for CBT over treatment as usual. Indeed, further analysis of the Cochrane data suggests that distress may even increase following some psychological interventions. We also know from the PACE trial itself that around 10 per cent of patients find that CBT makes their condition ‘much worse’ or ‘very much worse’. Given the estimated 0.2–0.4 per cent prevalence of the disorder, advising a course of CBT could detrimentally impact the lives of a large number – especially as we cannot predict who will find CBT unacceptable or distressing. Patient surveys consistently paint a similar, albeit bleaker picture of worsening following CBT.

The desire of patients to improve is unquestionable, but how do patients view CBT? If we turn to a more recent Action for ME (2014) survey of over 2000 ME/CFS sufferers in 2014, 12 per cent said that CBT had made their condition ‘a bit or much worse’. Another recent survey by the M.E. Association (2015) is far more pessimistic, as among 35 per cent of respondents who had undertaken a course of CBT, 91 per cent stated that their ‘symptoms were unaffected or made worse’.

If you’d like to contact the university:

Vice Chancellor:

Prof Michael Jones: mike.jones@mq.edu.au

Mr David McNaughton: david.mcnaughton@hdr.mq.edu.au

Ethics department: ethics.secretariat@mq.edu.au

With thanks to Jacquie Wilson.