Dutch Study on Medical Child Abuse Overlooks Guidance on ME/CFS-Related Safeguarding
Summary:
A recent study published in Child Abuse & Neglect examined 142 children across 86 families in the Netherlands who were diagnosed with Pediatric Condition Falsification (PCF), a form of medical child abuse similar to Munchausen Syndrome by Proxy. However, the article raises multiple concerns, particularly regarding outdated data, methodological issues, and a lack of consideration for children with complex chronic illnesses like ME/CFS.
Outdated and Inaccurate Data
The study is based on cases referred to the Dutch Child Abuse Counseling and Reporting Center between 2008 and 2013, yet was only published more than a decade later. This long delay undermines the relevance of the findings, especially given evolving medical and social understandings of child abuse. Additionally, the authors misstate the data period as five years, when it actually spans six.
PCF and Chronic Illness: A Risk of Misdiagnosis
PCF is often associated with serious cases of intentional harm by caregivers, but there is growing concern that this label is being misapplied—particularly to parents of children with ME/CFS, Long COVID, and similar conditions. These families are sometimes accused of medical abuse when they question or reject standard treatments like cognitive behavioral therapy (CBT) or graded exercise therapy (GET), both of which have been shown to be inappropriate or even harmful for ME/CFS patients.
The Case of Maeve Boothby O’Neill
A striking example is the 2021 death of Maeve Boothby O’Neill in the UK, who suffered from severe ME/CFS. Even in her final weeks, authorities investigated her mother for potential abuse, despite Maeve’s medical deterioration being well-documented. This reflects a broader trend where parents advocating for their chronically ill children are met with suspicion rather than support.
Overlap Between ‘Red Flags’ and Chronic Illness
The Dutch paper lists several “red flags” that triggered suspicion of abuse, such as excessive medical visits, multiple specialist consultations, parental disagreement with doctors, and social isolation. However, these same behaviors are common among families dealing with complex illnesses like ME/CFS. Parents seeking answers or better care can easily be misinterpreted as manipulative or abusive, especially by professionals unfamiliar with these conditions.
NICE Guidelines on Safeguarding in ME/CFS
Notably, the Dutch study fails to reference the 2021 UK NICE guidelines for ME/CFS, which warn against misinterpreting symptoms or parental advocacy as abuse. The guidelines stress that disagreements over treatment, school non-attendance, and atypical symptom patterns should not be automatically viewed as signs of neglect or harm. NICE also advises that any safeguarding or mental health assessments should involve professionals with specific ME/CFS expertise.
Conclusion
The Dutch paper offers data on a serious issue—medical child abuse—but it overlooks crucial context about complex chronic illnesses like ME/CFS. By ignoring updated guidelines and failing to distinguish between abuse and justified parental advocacy, such studies risk reinforcing harmful biases and misdiagnoses. Ensuring accurate and compassionate evaluations requires input from professionals who understand these misunderstood conditions.
