In this tenth episode of our Learn about M.E. podcast series, we discuss the need for specialist support and understanding for children and young people who live with M.E.
The right support is essential to help them access education that meets their needs alongside appropriate health and social care.
We hear from Dr Binita Kane, a Respiratory Consultant inManchester In January 2021, Dr Kane’s 10yr old daughter developed COVID and subsequently Long COVID / MECFS. Acknowledging her own limited knowledge of MECFS despite being a medical professional, this has led her on an international search for answers, culminating in her becoming a campaigner, researcher, patient advocate, champion for the Long COVID Kids charity and now a specialist physician treating patients with MECFS and Long COVID. She is now a passionate advocate for raising awareness of this neglected disease area. We also hear from Helen Gibson, a volunteer for #ME Action Scotland, a member of M.E. Parents and Mum to a 17-year-old-daughter with M.E.
Dr Kane highlights that useful things that GPs can do are:
1. listen to the child and parents and hear what they are saying: take it seriously
2. consider a post viral illness if a child reports with fatigue and pain but tests are normal
3. take a history using key questions about post-exertional malaise, family history and related conditions such as Postural orthostatic tachycardia syndrome (PoTS).
Dr Kane emphasises that this condition is not psychological. Exercise is not the answer but will worsen all symptoms. She recommended that GPs complete the Learna CPD module on M.E. to support this shift in approach.
Helen explains how her family have had to develop an expertise on the illness far beyond that which most patients/carers would expect, a direct result of M.E. being so poorly understood. She is now active in campaigning for better awareness, support and research into potential treatments for children and adults living with M.E.