*I would like to start this article with a trigger warning that the following may be upsetting – but I hope you will read on none-the-less.*
I have written before about the indifference among many where ME is concerned. There are still medical professionals who believe that ME is a psychological illness, not a physiological or neurological illness. Then there are politicians who think about money first and risk the health of many by trying to push them into work by downgrading their benefits (social security money).
Millie McAinsh
The story I’m about to relate is one happening right now in a hospital in Lancaster, UK. Millie McAinsh has very severe ME. Diagnosed in 2019, the severity of her symptoms has increased each year. Now she has problems with swallowing. Under the guidance of specialists, Millie was admitted to hospital in January to have a feeding tube inserted. Unfortunately, the hospital doctors have conflicted over the ME diagnosis and are refusing to insert a feeding tube believing the cause to be psychological not physiological. Millie now believes she is going to die because of this medical indifference, and in short, negligence. She is 18 years old.
Initially the hospital doctors thought Millie had an eating disorder, something that they now don’t believe – but they still can’t give an answer for her condition, and yet are still refusing to accept the ME diagnosis that was given in 2019.
Millie will starve to death without the feeing tube. The hospital doctors also refuse to insert one because they prefer her to sit at an angle of at least 30 degrees. This is something Millie cannot do as it is agony for her and distressing. ME experts have said that:
the[se] guidelines are based on the needs of stroke patients and are not relevant to those with severe ME.
So far the hospital doctors have not sought the advice of ME experts. But Millie’s case is certainly not the first one of this sort.
Alice Barrett
Alice, from Devon, was diagnosed with ME in 2020 and has been bedbound since 2022. After he condition deteriorated further in 2023, Alice was admitted to hospital. This hospital also would not allow a feeding tube to be inserted unless Alice was at a 30 degree angle. After a petition from the family, the hospital changed its guidance and fitted her with a tube. Alice’s family believe this saved her life.
Merryn Crofts
Merryn died in 2017 from ME, and was the second person to have ME as a cause of death on their death certificate. She was 21 years old.
Just like Millie, the hospital doctors refused to accept the ME diagnosis and diagnosed her with panic attacks, and then an eating disorder. They, too, refused to consult with ME experts. When Merryn developed a problem with swallowing, Clare, Merryn’s mum, tried to explain to one doctor that her daughter needed a feeding tube – to which he cruelly told her “You have one, it’s right here” while pointing to his mouth.
After Merryn’s death, a landmark inquest concluded that her cause of death was starvation caused by a withdrawal of supportive nutrition, caused by ME.
Maeve Boothby-O’Neill
Another case of medical neglect is the story of Maeve Boothby-O’Neill, the daughter of The Times journalist Sean O’Neill. He has written many articles on ME as he watched his daughter’s struggle with the illness.
Maeve’s story starts with a viral infection aged 12. It took five years for an ME diagnosis to be given. Again, doctors were unable to find anything wrong with her, and she was sent home from the hospital on three different occasions. Maeve died in 2021 aged 27. A full inquest is due this year. You can read more on Maeve’s story here and here.
So, What’s Going Wrong?
Sue Waddle, from ME Research UK, a not-for-profit group that funds medical research, said the condition was not well understood, partly because there is no known cause or treatment.
“This illness has been stigmatised and denigrated because of incorrect messaging,” she said. “Data isn’t collected on the numbers with ME. There are no doctor-led Centres of Excellence for ME in this country. There is a huge lack of understanding,” Ms Waddle said.
At the pre-inquest into Maeve’s death, her mother, Sarah, said:
“There is 65,000 other people facing the same risk as Maeve faced right now. I’m in touch with some of them and they are having an identical experience; that’s not just Devon but across the country as a whole which is why I see it as a systemic failure. Every trust is in the same predicament.“
This is why ME Awareness Month is so important for those of us who have been diagnosed with ME – whether we have mild symptoms or are in the ‘very severe’ category. Those of us who are able, work to improve understanding of this very misunderstood illness; and raise funds for research so a cause can be found so we can then work towards a cure. Without research we have no hope of recovery.
Here are some articles on ME you may like to read:
Copyright © 2024 Charlotte Clark
Charlotte Clark 