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Our CEO talks about being parent to a child with M.E.

May 23, 2017

"I am so fed up of having to explain to people that Danny is not just tired; if only that were the case. We have lost friends, good friends, when we ran out of patience with explaining that Danny was off school so much, not because he had friendship issues or didn’t like his classes, but because he had an illness that seemed to be eating him up from the inside."

Our CEO Sonya Chowdhury shared her own story about being the parent of a child with M.E. on the Huffington Post website yesterday, prompting many of you to share your own experiences of living with M.E.

“My family and I have been blown away by the messages of support you have shared – thank you,” says Sonya. “I wish that it was not the case that so many of you were able to understand what Danny is going through. I made the decision not to share my experiences more widely before yesterday because of my job. That may sound silly but because of my role, it would have made it so much more public. I have been lucky to have great family and friends around me that has shared our journey, helping to prop us up when we needed it but it was so touching and valuable to have such lovely messages of support yesterday from people who have similar insight albeit from their own experience of the illness.”

If you’re a parent or carer with a child who has M.E., our dedicated parent’s and carer’s forum can be a valuable source of peer support. The forum is available to Action for M.E. supporting members but we want to provide support to everyone affected by M.E. and don’t want our membership fee to be a barrier to parents of children with M.E. getting the support they need. If you’d like to access our forum but can’t afford to become a supporting member at the moment, please call us on 0117 927 9551.