Devon woman with ME asked GP to help her ‘get enough food to live’, inquest hears
https://www.theguardian.com/society/article/2024/jul/22/devon-woman-with-me-asked-gp-to-help-her-get-enough-food-to-live-inquest-hears
Posted by Lunabuna91
Devon woman with ME asked GP to help her ‘get enough food to live’, inquest hears
https://www.theguardian.com/society/article/2024/jul/22/devon-woman-with-me-asked-gp-to-help-her-get-enough-food-to-live-inquest-hears
Posted by Lunabuna91
12 Comments
ME stands for Myalgic Encephalomyelitis.
It is a brutal disease that has been ignored and gaslit for decades.
https://www.actionforme.org.uk/get-information/what-is-me/what-does-me-feel-like/
> Four months before she died, aged 27, Boothby O’Neill, wrote to her GP: “I know you’re doing your best for me but I really need help with feeding. I don’t understand why the hospital didn’t do anything to help me when I went in.
> “I am hungry. I want to eat. I have been unable to sit up or chew since March [three months before]. The only person helping me eat is my mum. I can’t get enough calories from a syringe. Please help me get enough food to live.”
This is gut wrenching to read. I hope there are some answers and that the health sector is given some real change.
I unfortunately suffer with this and getting the help people need is near impossible
People all too often say this isn’t real – whilst we do not know why it affects four times as many women as men or what causes it or even how to treat it – we do know the end result on sufferers is profound and if it were your mother or sister in that situation you would want them to receive all the help possible
We desperately need more understanding of this phenomena. I am a neuropsychiatrist who works with many patients with medically unexplained symptoms.
The problem with ME is that the definition is so broad as to encompass many different causes. The very loud ME crowd would have you think there is one unifying probably post viral cause for ME.
Ive seen patients who clearly have a post viral phenomena from their history, absolutely wrecked from fatigue trying their hardest to improve their lot, upset they cannot work like they used to. What the ME crowd do not acknowledge is there is a large number of people for whom their ME seems to only be an issue when they have to do something they dont want to do, or is a manifestation of their anxiety with the secondary gain being that they dont have to do anything that makes them anxious, you also get outright malingerers. No one treatment will work for this entrie cohort. We need further research to help identify those who are suffering from inflammatory processes and identify a target to treat and seperate them from those for whom the symptoms are somatisation / subconscious secondary gain / malingering as they require psychological not medical input.
I have ME and today, I want to not live anymore. I believe mine has 2 causes, one being gut related (I had an appendectomy as a child) and don’t have enough good gut bacteria. I don’t think I absorb enough nutrients and also have a gluten intolerance which makes it worse.
The second being a sleep disorder, caused by premolar extractions as a child. I have a tiny airway and the sleep issues have been there all my life from a teen. It’s worsened with age because of natural muscle loss as we age, less collagen etc. instead of having expansion, I had extractions (because NHS/cheaper/quick and dirty). So I have less space in my mouth for my tongue and my teeth have been destroyed by years of bruxism and mouth breathing at night.
Not getting proper sleep wreaks havoc on every system of the body. After a full on day of working yesterday, today everything hurts, I feel sick, can’t eat, can’t even get up to make food, and I feel like this is just my life now, and I don’t want to live like this. I do have better days but I ALWAYS get at least 3 days a week where I’m disabled and suicidal.
One of the many, many, many reasons why we need a universal basic income.
This is absolutely criminal. While CFS/ME is a difficult one there should be a criminal negligence suit brought against the doctors that decided she was not in need of hospital care. They discharged her home to die on the basis of their own negative assumptions about ME.
Presumably she died of starvation or malnourishment.
This is horrifying.
we should fix their ME and but we can’t forget to their inevitable EDS/POTS/MCAS/Long Covid either
Another one is FND but there is a psychological component to it
Did you ever consider that rather than malingering it could be a stress reaction causing symptoms to worsen? Or consider that people are forced to conserve their energy to accomplish a few things and then crash, instead of “they don’t want to”?
You’re an amazingly ignorant person in a field that requires investigation and nuance. Perhaps you should consider something more in line with your abilities, such as digging ditches