This last week or so, while most of the U.K. has been following the unrest and riots, or glued to coverage of the Paris Olympics, in a small corner of Devon a very important inquest has been conducted. That of Maeve Boothby O’Neil who died at age 27 “from malnutrition caused by severe ME” (The words of the Coroner). It is beyond shocking.
I have refrained from commenting too much, because the death of a young person with ME is just devastating. One cannot imagine the heartbreak for that family, and on a personal note, it can be quite triggering, sending one back to those very dark days post diagnosis when one discovers that nobody in the healthcare system actually knows much about ME, and that appallingly in the 21st century, there is no treatment or cure.
It is only recently that diagnostic criteria for ME have become more focused. ME is now officially recognised as a neurological condition.
In 2021 the NICE Guidelines were re-issued, removing the harmful Graded Exercise Therapy (GET) in favour of a more patient focused approach to treating the symptoms of this little understood condition.
The guidelines also included a symptom severity and disability rating scale, ranging from very mild to very severe.
I consider myself very fortunate to only be moderately affected.
“Fortunate”??? “Only”??? I hear you ask ……..
But as I have mentioned in previous blog posts, it’s horrible, it’s disabling, but some are far less fortunate and are severely affected by ME.
They are usually confined to bed, intolerant of light and noise, have little social interaction, and rely heavily upon family to care for them, because they are often incapable of doing so themselves.
But it’s tragic to think that ME can be implicated in the death of someone with severe ME.
The week of the 5th to 11th August happens to be Severe ME week, where the plight of such severe cases is highlighted (by others not so severe) in order to raise awareness.
We have to raise awareness because, as I have said before, ME gets very little press and attention in the world. And the medical community world wide, not just here in the U.K. doesn’t know how to treat people with ME, because they don’t understand it, there’s only symptom management and no magic bullet.
Unlike other more well known illnesses such as Parkinson’s, MS, Cancer, and Diabetes, which are just as disabling and life changing, ME has not received the research funding and general health education of professionals, and care within all healthcare settings.
I’m sorry to say ME has been neglected and ignored.
(Even I didn’t believe my own diagnosis, which for a Nurse of some 43 years standing was strikingly revealing - I’d never been taught about ME).
So Maeve’s inquest has come at a very pertinent time.
Things have to change. And the ME community, charities, and healthcare professionals who do understand and care for people with ME, all very much hope that the inquest findings will galvanise those concerned into action.
Andrew Gwynne, Minister for Public Health, said at the inquest that Maeve had “fallen through the cracks in the system”. Her father stated that she had fallen into a “deep gaping hole”.
However you look at it, this cannot happen again, ever.
I conclude with Andrew Gwynne’s statement
“Every patient deserves to have their condition understood and treated to the highest standard “.
My thanks to those who have spoken up for people living with ME, at this inquest and in its wider reporting. We’ve got to keep sharing our stories, because someone will listen.
Sue Hardy 10/08/2024
