A life cut short by medical neglect: interview with Sarah Boothby, whose daughter Maeve died at 27 of severe ME/CFS

[Countrygirl]

https://mecfs-med-ed.org/2023/05/31...qYhzF2tC_1DCNzxJx9JPcO6hsMTk-3rPKT4KK7W__ydnE

A life cut short by medical neglect: interview with Sarah Boothby, whose daughter Maeve died at 27 of severe ME/CFS​

31st May 2023Katie Johnstone

I spoke with Sarah Boothby over zoom on 19 May, 2023. Our discussion was wide-ranging, and I’ve cut down and rearranged what was said for length and clarity. Maeve’s story is profoundly upsetting, and discretion is advised.

Maeve Boothby-O’Neil. I requested a photo and received this with the note: “She did not want to be remembered for being ill. She was a writer with a talent for languages.” Photo: Sarah Boothby.
How old was Maeve when she first got ill with ME? How did it affect her life?
Maeve was 12 when we both had the same virus in the spring of 2006. I recovered fully. Maeve slowly developed ME.
She was an A* student. A natural scholar who loved to learn and did not miss school, but she was given a reduced timetable and they asked her to sit out of PE lessons because she would collapse. By the time the diagnosis was confirmed she had left school with three A Levels and five AS Levels.
She could not progress to university but continued to teach herself -Hebrew, Irish, Italian, economics, philosophy, creative writing and everything she could learn about the biomechanisms of ME until the illness became very severe in 2020.

People with ME often face a long and difficult journey to get a diagnosis. Was that the case for Maeve?

Yes. Once she got ill she began seeing a paediatrician, who told her there was nothing wrong with her. That went on for two years. Then we moved two counties to get a diagnosis from an NHS centre of excellence in Bristol, and had to wait nine months for confirmation of the diagnosis.

You moved house in order to receive better medical care for Maeve?

Yes, there was nothing for her where we were. As she became more severe she saw countless healthcare professionals in hospital and in the community after needing more help to live than her mum alone could provide.............................................

 

[Judee]

So sad.

 

[Gijs]

I want to wish her family, friends and loved ones lots of love.

 

[SlamDancin]

This is the quintessential ME/CFS story. Docs don’t care until you’re dead and then it’s too late. RIP

 

[lenora]

This never should have occurred....it's heartbreaking. A beautiful young woman who left us far too soon. Yours, Lenora

 

[Countrygirl]

In today's TImes, Sean O'Neil writes about his daughter's death from ME when the doctors at the Royal Devon and Exeter Hospital, Wonford, Exeter refused to provide life-saving treatment as they don't believe ME to be a medical condition. On the previous page, he writes a long article on the distressing wait times for inquests.
This year they denied Alice Barrett nutrition until a media campaign, initiated by her sister and supported by the patient community forced the Wonford doctors to feed her.





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[lenora]

Two years already. I can remember so easily when that beautiful young woman passed away.

Yes, the father is right.....everything must be stuck when also dealing with the legal system. You wait and you wait some more.

I'm sure the hospitals thought she was suffering from an eating disorder (I know, because one of my daughters had anorexia many, many years ago). She overcame it, but it was a heart stopping time.

If you ever see people on the street who are young and thin, never just write it off as an eating disorder. There are many illnesses that can cause problems....as Maeve has shown us.

I hope her family reaches some sort of accordance with the law in the near future. I also hope they can then continue their road of grief. Yours, Lenora