Barriers to recruitment in paediatric CFS research: "the focus of the study itself"

I want to mention the study results published by Maria Loades and colleagues [1] today. This piece of research focused on the issue of participant recruitment "in the context of an observational study of mental health problems in adolescents with paediatric Chronic Fatigue Syndrome (CFS/ME) presenting to a specialist paediatric CFS team" and the barriers faced when trying to recruit for such a study. Various obstacles to participation were noted, including an important variable: "the focus of the study itself."

The Loades article is open-access so doesn't need any long post from me. The main points: researchers asked researchers about their research experience specifically focused on "exploring healthcare professionals’ views of recruiting to studies, including the facilitators and barriers to recruitment to this study." 'This study', by the way was an "observational study of co-morbid mental health problems in adolescents with confirmed CFS/ME."

Results: based on interviews with six researchers, various qualitative results were provided. Some interesting points were raised. The ones that stood out for me were related to how researchers themselves talked about the research focus on mental health in relation to ME/CFS. A few choice quotes exemplify this: "…because it’s got depression in the title and um I think um you it just seems a little bit more explanation um by inviting them to take part I’m not suggesting that they are depressed…" and "because it is more objectively more obviously about the mental health side of things I have found it to be a different experience recruiting to this."

I'm sure that for those with some knowledge about the debates on-going in the context of ME/CFS you can perhaps see where I'm going with this. I speak of course about the 'application' of things like the biospychosocial (BPS) model to ME/CFS which has, I'm afraid to say, caused some significant distress down the years to patients, their loved ones and many researchers alike (see here and see here). Indeed, one could argue that the application of the BPS model to ME/CFS, where 'unhelpful thoughts' for example are deemed part-and-parcel of some peoples view of ME/CFS, has been so damaging to the concept of ME/CFS, that any study looking at mental health in the realm of CFS/ME is likely to be seen as 'tainted' by association.

And, as I write, still the BPS beat continues [2] although with scrutiny continuing to follow [3]...

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[1] Loades ME. et al. Obstacles to recruitment in paediatric studies focusing on mental health in a physical health context: the experiences of clinical gatekeepers in an observational cohort study. BMC Med Res Methodol. 2019 Apr 27;19(1):89.

[2] Gregorowski A. et al. Child and adolescent chronic fatigue syndrome/myalgic encephalomyelitis: where are we now? Curr Opin Pediatr. 2019 Apr 30.

[3] Vink M. & Vink-Niese A. Cognitive behavioural therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective. Re-analysis of a Cochrane review. Health Psychol Open. 2019;6(1):2055102919840614. 

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