Research by Professor Jason and colleagues has found that the way questions are asked in ME/CFS research can influence the responses given by participants. The team concluded that these altered responses to study questions may unintentionally reinforce erroneous assumptions that the ME/CFS is psychological in nature (psychosomatic).
The study, which included 2,248 people with ME/CFS, aimed to assess if the way questions were worded “influenced whether participants attributed their symptoms to physical or psychosocial causes”.
It is worth noting that although participants were from several international datasets which diagnosed ME/CFS using different methods, the DePaul Symptom Questionnaire (DSQ-1) – a tool which provides a uniform way of assessing ME/CFS symptoms based on both the Canadian Consensus Criteria for ME/CFS, and the Fukuda criteria for CFS, was completed by everyone who took part in the study.
The research team analysed responses to two different questions which are part of the DSQ-1:
- Question 87: “What do you think is the cause of your problem with fatigue/energy?”. Here, participants could respond by selecting one of the following options: “definitely physical, mainly physical, equally physical and psychological, mainly psychological, definitely psychological, and no problem with fatigue”
- Question 88: “Do you think anything specific in your personal life or environment accounts for your problem with fatigue/energy?”. Participants who responded “yes” were then asked to elaborate with a “fill in the blank” section which read “please specify”.
A total of 2,248 participants answered question 87; 81% (1,828) of these participants indicated that their issues with fatigue/energy were either ‘definitely’ or ‘mainly’ physical, while only 1% (30) identified the cause as ‘definitely’ or ‘mainly’ psychological.
Despite this, when considering the 419 responses to question 88:
- 40.8% (171) were categorised as ‘physical’,
- 44.2% (185) were categorised as ‘psychological’,
- 15.0% (63) were categorised as ‘environmental’.
Notably, among participants who selected ‘definitely’ or ‘mainly’ physical in response to question 87, 30% of their written responses to question 88 were coded as psychological. Importantly, the research team observed that those who responded to question 88 were “more likely to struggle with aspects of their mental health compared to those who did not respond”.
Based in their findings, the researchers suggest that the wording used for question 88 “implicitly narrows participants’ focus to aspects of their personal life or environment”. The team add that “while it does not explicitly exclude physical factors, it primes participants to consider responses that align with these two categories” – something that may substantially increase responses relating issues with energy/fatigue to psychological factors.
ME Research UK notes that the findings from the paper by Jason and colleagues highlight the importance of carefully developing research questions, where possible, in collaboration with people who have lived experience of ME/CFS. It is also important to pilot – or test – questionnaires, surveys, and interview questions to ensure that the questions within them are clear, relevant, and accurately measure what they intended to across all groups of potential participants (i.e. also in underserved groups, and not just in the majority).
