By David Tuller, DrPH
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The journal Child Abuse & Neglect recently published a paper called “Characteristics of 86 families and 142 children diagnosed with Pediatric Condition Falsification in the Netherlands.” The study analyzed files from the country’s Child Abuse Counseling and Reporting Center (CACRC), to which anyone can refer a suspected case. According to the paper, the aim was “to gain more insight into common factors in these families, making it easier and earlier for professionals to recognize PCF.”
But there’s something a bit odd about the article. The study was approved by an ethics committee in 2014. The files examined were “collected [by CACRC] over a five-year period (January 2008–December 2013).” This statement reveals two problematic issues.
First, these data are really, really old. I assume that investigatory processes and strategies, as well as understandings of child abuse, have changed in the dozen years since the last case examined. The authors, as far as I could tell, did not offer any explanation for this very, very long lag in producing and publishing their analysis. Without some sort of explanation, it is hard to understand how the findings should be interpreted. How can we have confidence that these data, and the analysis based on them, are currently relevant?
(The lead and corresponding author, pediatrician and child abuse specialist Patries Worm, has been featured extensively in news reports about a woman who was found to have harmed her daughter with poisoned breast milk and was convicted last year of attempted murder. Perhaps this terrible case prompted the publication of the recent article, although that still does not explain the unusual delay. It is important to note, of course, that this guilty verdict does not in any way mean that many or even most such accusations are true.)
Second, the indicated dates–January, 2008, through December, 2013—cover a six-year period, not a “five-year period” as claimed. (Do I need to itemize this for clarity? Six years: 2008, 2009, 2010, 2011, 2012, 2013.) The authors’ apparent inability to count correctly and fix this obvious mathematical error raises concerns about their competence and attention to detail.
Pediatric Condition Falsification (PCF) is another term for what has often been called Munchausen Syndrome By Proxy (MSBP), and more recently Factitious or Induced Illness (FII) and Factitious Disorder Imposed on Another (FDIA). Although these latter names do not require that the individual suffering harm is a minor, most identified or purported cases that fall into these categories involve a parent and child.
These cases are devastating; for most people, it is hard, if not almost impossible, to understand how parents could intentionally harm their children. According to the Cleveland Clinic, which refers to the syndrome as FDIA, “isn’t common,” although reliable data on prevalence are scarce or non-existent.
However, given the frequency with which parents of children with ME/CFS, Long COVID and related complex disorders have been accused of intentionally harming their kids, the construct–whatever it is called—is clearly susceptible to serious abuse. Parents can get slapped with these accusations when they resist medical advice they consider unhelpful or harmful—such as when they refuse to let their child be subjected to graded exercise therapy (GET) and/or cognitive behavior therapy (CBT) if they have ME/CFS.
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Professor Esther Crawley’s malign and harmful views
The case of 27-year-old Maeve Boothby O’Neill, who essentially died from malnutrition four years ago after her ME/CFS made it impossible for her to ingest food, is telling in this regard. At the inquest into the circumstances of her death, which was held in Exeter, England, in the summer of 2024, evidence indicated that, even in the weeks before she passed away, health authorities were continuing to investigate whether her mother, Sarah Boothby, was responsible for her devastating decline.
I obviously have zero interest in defending parents who abuse their kids in any way. At the same time, it is hard to imagine a worse nightmare than being the parent of a seriously ill child and having authorities claim it’s all your own doing. But that’s what seems to happen with some frequency when it comes to these complex illnesses. In the UK, much of the impetus behind efforts challenging parents’ decision-making was attributed in the past to the views and behind-the-scenes actions of Bristol University’s ethically and methodologically challenged pediatrician and grant magnet, Professor Esther Crawley. (Professor Crawley, a GET/CBT fanatic, has since retired from the university and from medicine, for reasons that remain unexplained. But her malign and harmful views appear to linger on.)
It goes without saying that suspected cases of abuse must be investigated. The problem occurs when these cases are investigated based on purported warning signs or “red flags” that clearly parallel the experiences of families with a child suffering from ME/CFS, Long COVID, and related diseases. Given the widespread lack of understanding of these conditions, it is easy to see why authorities reflexively point the finger at parents when their kids’ medical issues resist easy biomedical explanations.
A quick look at this paper indicates just how much overlap there is between these “red flags” and situations involving complex illnesses. In the cases studied, the authors categorized the triggers for the report of medical abuse:
“Doubts about the child’s medical history and the amount of unexplained medical complaints were often reasons for reporting: medical overconsumptions of the child, meaning a strikingly high number of doctor and hospital visits not consistent with the symptoms (63,4 %), discrepancy between the history and observation about functioning by others (54,9 %), somatization (45,8 %), lying about (the seriousness of the) illness by the parent (43,7 %), medical unexplained complaints (39,4 %), social isolation of the child (37,3 %), conflicts between parents and professionals (36,6 %) and magnifying complaints (33,8 %)…
“Another indication of the suspicion of PCF was the involvement of multiple caregivers with the child. 52,1 % of the children had four or more (medical) professionals involved at start of the CACRC investigation and had visited several hospitals at the same time. Various somatic medical specialists were involved in 60 % of cases: pediatricians (57 %), general practitioners (38 %), pediatric neurologists (16,9 %), rehabilitation doctors (11,3 %), metabolic disease pediatricians (9,2 %) and pediatric gastroenterologists (8,5 %).”
Many parents of kids with chronic complex conditions will recognize some or all of these “red flags” as paralleling their own encounters with medical and health care providers in the course of their desperate search for answers and effective treatments, A psychologist or pediatrician might easily be convinced that a parent resisting their advice repeatedly represents PCF. But when that advice is bogus or even potentially harmful—as in recommending graded exercise therapy for children with ME/CFS—smart and informed parents are likely to object.
That makes them appropriately concerned caretakers—not abusive ones.
Tellingly, the PCF paper makes no mention of ME/CFS or Long COVID and the confusion that can emerge around safeguarding when kids suffer from these and related illnesses. The 2021 ME/CFS guidelines from the UK’s National Institute for Health and Care Excellence are very explicit on this point, so it’s worth quoting the document in detail. Here are the key points:
“Recognise that people with ME/CFS, particularly those with severe or very severe ME/CFS, are at risk of their symptoms being confused with signs of abuse or neglect…
“If a person with confirmed or suspected ME/CFS needs a safeguarding assessment, directly involve health and social care professionals who have training and experience in ME/CFS as soon as possible….
“If a person with confirmed or suspected ME/CFS needs to be assessed under the Mental Health Act 1983 or the Mental Capacity Act 2005, directly involve health and social care professionals who have training and experience in ME/CFS as soon as possible…
“Recognise that the following are not necessarily signs of abuse or neglect in children and young people with confirmed or suspected ME/CFS:
- physical symptoms that do not fit a commonly recognised illness pattern
- more than 1 child or family member having ME/CFS
- disagreeing with, declining or withdrawing from any part of their care and support plan, either by them or by their parents or carers on their behalf
- parents or carers acting as advocates and communicating on their behalf
- reduced or non-attendance at school.”