Dr DAvid Tuller: In England, Conflicts Between Families and Hospitals Threaten the Lives of Young Women with ME

[Countrygirl]

Trial By Error: In England, Conflicts Between Families and Hospitals Threaten the Lives of Young Women with ME​

Leave a Comment / By David Tuller / 9 April 2024
https://virology.ws/2024/04/09/tria...ls-threaten-the-lives-of-young-women-with-me/

By David Tuller, DrPH
ME patients and advocates in England have been alarmed by a series of ongoing cases in which the families of severely ill young women have struggled to convince hospitals to fit them with feeding tubes before they starve to death. I covered a similar situation last year in a piece about the life and death of Maeve Boothby O’Neill, who died at 27 in October, 2021, after failing to obtain the care she hoped for at her local hospital in Exeter.
But recently other cases have gained attention. The most dire at the moment is that of Millie McAinsh, a young woman from Lancaster. Her situation was highlighted in a change.org petition, a fundraising appeal, and harrowing accounts in The Canary on March 8th, Byline Times on March 19th and The Mirror on April 4th. The latter, by Mirror deputy online features editor Elle Fry, starts like this:
“A hospitalised teen who is unable to walk, talk or eat fears she is going to die because doctors don’t agree that she has ME.
“Millie McAinsh, 18, says she suffers from ME that is so acute that she can’t walk or sit up and struggles to speak or swallow. Even the smallest sensations like touch, noise and light unbearable, as her sensory hypersensitivity leaves her in agony.”

 

[Rufous McKinney]

Can patients with such severe symptoms tolerate feeding tubes?

Touch is unbearable, but a feeding tube is OK?

I'm praying for Millie and her family, and other victims of this indifference.

I can swallow, but my stomach stops emptying. Its truly awful, and why is nobody investigating why ?

 

[alivenotkicking]

You can also add Karen Gordon to that list... https://www.change.org/p/save-karen...=email&utm_source=petition_update&utm_term=cs

 

[Countrygirl]

​

https://www.lancs.live/news/uk-world-news/teenager-agony-unable-walk-eat-28957546​

Teenager in agony unable to walk, eat or talk... 'but still can't get a diagnosis from doctors'​

Millie McAinsh "begged" doctors to help her eat

A teenager who has been left unable to walk, eat, or even talk, fears she is going to die because medics don't agree she is suffering from ME.

The family of Millie McAinsh, from Silverdale, say she suffers from Myalgic Encephalomyelitis so severe that she struggles to sit up properly. Even the smallest sensations like touch, noise and light unbearable, as her sensory hypersensitivity leaves her in agony.

"I feel like I'm dying. I'm constantly hurting. I'm in agony and they are not listening to me," she said of her ordeal, which she describes as 'torture'. "I can't take it anymore. I need to go home."

Desperate for a second opinion, Millie's family asked a private doctor, who diagnosed severe ME. Professionals at the hospital no longer believe Millie has an eating disorder, her family say, but have not made a positive diagnosis of any condition so far.

Now Millie's distraught family worry that the stimulating hospital environment could overwhelm her system and kill her. Heartbroken mum Lucy Montgomery, 53, said: "Doctors keep saying they know Millie 'believes' she feels this way. But they don't understand that even the footfall on the floor, the vibrations of someone walking nearby in the hospital, leave her in agony.

 

[Mary]

@Countrygirl - do you know why it always seems to be young women who are treated so badly by the health care system - what about young men? I know more women than men have ME/CFS but even so you would think there would be a young man once in awhile subject to the same abuse . . .

 

[Countrygirl]

I know men are also treated badly. I am aware of two who have been locked away for more than a decade on account of having ME. One was just a child when he was removed from his mother simply because he had the illness and the doctor wanted to give him GET. Mum was then sent to prison for several months for greeting him when she saw him outside the place where he was kept. They never let the poor child go and he must be about 30 now and still locked away. Other men I know have died as a result of the cruel treatment, one of whom was a friend of mine for about 30 years.

I think it seems to be mainly women for the simple fact that most ME patients are female. Also, there is no doubt the tendency to take a man's symptoms more seriously than a woman's.

 

[Blazer95]

How is this Not the biggest scandal ever?

Is it only this Bad in UK? Because i am from Germany and of course we get also laughed at and have literally 0 Treatment but i tend to think its Not that Bad Here then in UK.