** Trigger warning: upsetting content, death **
In a recent article, The Guardian discusses the "harrowing" inquest into the tragic death of Maeve Boothby O'Neill, covering the Coroner's conclusions, which were presented on Friday 9 August, that Maeve had died of natural causes "because of severe myalgic encephalomyelitis (ME)".
The article also discusses how many within the ME community hope that Maeve's story "will come to be seen as a landmark case that will lead to change in the way people with ME are treated and perceived."
Our CEO, Sonya, was also asked to contribute to the article, saying:
It is clear that the NHS has not yet developed the framework to deliver effective support to people with severe and very severe ME.
There is no clear pathway for care and this is compounded by a lack of understanding that some healthcare professionals have and, as we have seen in situations like Maeve’s, stigma. There is no excuse for this.
The scientific understanding for ME is lacking as a result of major underinvestment in research over the years but that is no excuse for what we have heard in Maeve’s situation.The overarching theme emerging is the absence of anyone with knowledge of ME and the reluctance of anyone to take responsibility.
It would be too easy to blame any one individual; this is a system-wide problem and one that the NHS has responsibility to take leadership of to prevent further harm.”
