United Kingdom: Cases of people with ME/CFS with severe feeding problems, in the media

[Alis]

Doe

Sadly another death with feeding tube ( lack of)
https://twitter.com/user/status/1905685296299327658


Found out today that a lady in a Bristol hospital who had M.E, EDS and MCAS passed away this week from starvation.

How tf is that possible in this day and age to allow that to happen? To be refused TPN because the ‘infection risk is too dangerous’ … more dangerous than? Death?

does anybody know which hospital she was in?
This is my neck of the woods.
not able to go on twitter.

 

[MrMagoo]

Doe


does anybody know which hospital she was in?
This is my neck of the woods.
not able to go on twitter.

Not sure, not many details apart from her name was Sharon and it was also on Facebook.
Another “TPN is too dangerous” situation.

 

[Alis]

Not sure, not many details apart from her name was Sharon and it was also on Facebook.
Another “TPN is too dangerous” situation.

thanks @MrMagoo
I did know a Sharon years ago with ME. She lived right at the other side of the city to me. I hope it wasn't her.

I'll see if I can find out anymore on FB

 

[Jonathan Edwards]

I'll see if I can find out anymore on FB

It would be useful to have information on such cases. I have not got any further with trying to get a sensible response from physician colleagues but every bit of information helps.

 

[SNT Gatchaman]

Today in upside-down world: not a UK case and an opposite situation where the person has been tube-fed without their consent.

New Zealand Herald: Woman wins court order to refuse medical treatment and food

A 26-year-old woman with a history of health problems has won an order to “let nature take its course” - a move that could allow her to starve to death in hospital where she is refusing food and medical intervention.

The woman, whose name is suppressed, has a long and complicated history of health issues and has spent large portions of the past seven years in the hospital.

While she and her family believe she suffers from gastroparesis, a physical condition affecting the stomach, there has never been any medical evidence that she has the condition.

Instead, she’s been diagnosed with a factitious disorder, a mental health condition in which the sufferer consciously self-induces, feigns or exaggerates physical or psychiatric symptoms to receive medical care. It cannot be treated with medication.

Despite this, neither the woman nor her parents has ever accepted that there is a psychological or psychiatric component to her condition.

As a result, she has refused to engage in any kind of psychological therapy that might help.

The woman has been subject to orders under the Protection of Personal and Property Rights Act since 2018, which permitted health professionals to treat her, including food via a tube.

she’s undergone 30 surgeries for various infections and, since early this year, has limited her food intake and refused any further surgical intervention.

The woman is described as being emaciated and frail, bed-bound and in a dark hospital room with closed curtains as natural light hurts her eyes.

The woman told a court-appointed legal adviser living in a hospital long term - as she has done for 1588 days (about four years and three months) in the past five years - was not, for her, a life.

She is completely dependent on others for assistance and does not even have sufficient strength to lift herself up in bed. She says she no longer wants to be under the control of anyone else, including medical professionals.

The woman told the adviser, who visited her in the hospital, that she’d been forced to undergo psychotherapy in the past, but it did not help, and she doesn’t want to do it again.

While the woman accepts that without further medical intervention, she will likely die, she said she isn’t suicidal and doesn’t want assisted death.

Her parents have also accepted her decision not to consent to further treatment.

When a treatment order was first imposed in 2018, one expert found that in most issues, the woman had full capacity, except when it came to healthcare decisions.

“The pattern of poor decisions is life-threatening (she has left the hospital against medical advice, discontinued care, requested palliation for a treatable condition), and appears to have no insight (and is... resistant to input) around the basis for her condition,” that expert found.

“Therefore, I think she is impaired around her ability to understand the nature and consequences of her situation.”

No, it's medicine that is impaired around its ability to understand the nature and consequences of her situation.

 

[rvallee]

As a result, she has refused to engage in any kind of psychological therapy that might help.

The woman told the adviser, who visited her in the hospital, that she’d been forced to undergo psychotherapy in the past, but it did not help, and she doesn’t want to do it again.

Oh, yeah, sure. No true psychology. Next time, though, it will totes work. Or whatever.