A mother of a child with severe ME/CFS describes troubling experiences of medical harm and accusations of abuse in healthcare settings

Children with severe ME/CFS and their families all too often face misunderstanding and accusations of abuse in healthcare settings. There is little awareness of these experiences, in part because many families are understandably unwilling to share their stories. I’m very grateful to Tina Rodwell, who is a full-time carer for her son Angus, for sharing hers.

I’d like to highlight several points in Tina’s story which sadly are not unique, but form a pattern which advocates see repeated over and over:

• The doctors involved had little knowledge of ME/CFS, or they had out-dated knowledge.
• When the MRI scan came back normal the consultant neurologist jumped to the conclusion that there was nothing physically wrong with Angus, and that his mother was somehow the problem.
• Once one doctor had decided that the illness was ‘not real’ and that the mother was untrustworthy, every subsequent doctor looked at Angus and Tina through this lens.
• Acting without Tina’s knowledge or permission, a clinician had Angus do strenuous physical exercise. This clinician was unaware that exercise can be dangerous for people with ME/CFS. The exercise prompted a very serious relapse.
• Because doctors did not recognise the seriousness of Angus’s illness, the school considered him to be ‘truant’ and a school attendance officer got involved. Tina was lucky that the attendance officer was familiar with ME/CFS; if not for this stroke of luck the family might have faced a referral to Social Services.
• Tina advocated for her child and protected him from harmful treatments. Because of this, doctors concluded that she was fabricating her son’s illness.
• Tina moved Angus to a different hospital, but the accusation of fabricated or induced illness (FII) followed them.

Tina has made it clear to me that she doesn’t want medical professionals to feel blamed or attacked by her story. She wants them to listen and understand, and find ways for clinicians and families to work together to provide better care for kids like Angus going forward.