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ME patient found dead of heart failure and malnutrition

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Were you under the care of a doctor at the time? Didn't this concern them? I can see how people can get malnourished, but not to the point of death while under the care of medical professionals -- unless the patient refusing treatment for malnutrition, of course.

It's my understanding that this patient was seeing both a psychiatrist and a medical doctor. One or both should have recognized and treated severe malnutrition.

I was being prescribed various drugs to try to alleviate the diarrhoea and vomiting but nothing worked. But there was nothing the doc could do about the fact that I couldn't afford to eat healthily. I recall frequently saying to various people that what I needed was an injection of money. Welfare ministers please note.

Yes, it does seem extraordinary that such severe malnutrition as this poor man had was not addressed.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Cheney and lerner come to mind stright away when cardiac issues are mentioned with cfs/me. dr lerner has documented issues with t wave abnormalities in cfs/me. T wave is apart of the ECG which indicates the resting phase of the heart and is when the heart muscle gets its oxygen and nutrients.
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
The T-wave is also the time period where the left ventricle repolarises, in order to gain the momentum/energy to shove its contents out.
In PWME it is often found to be flat or even inverted, demonstrating insufficient power in the left ventricle to get the blood around.

I haven't managed to get my gp to do an ECG trace on me, but I did get one in A&E when I had a recent sojourn there.
I do not have a flat or inverted T-wave. :)
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
My doctor ran bloodtests, and found my kidneys on the brink of failing back in April already and other signs of malnutrition. I also lost 8 kg within a couple of weeks. He is concerned, but there is little he can do. I am dependent on the foodbank for lack of money. Other people just comment on how well I look after the weight loss.

Guido den Broeder , I am sorry you have these problems, but I understand. I needed the foodbank for years, though I rarely need to go there any more.

I wish we had an option rather than "like". I don't like what you are going through, but I understand it. Maybe a button that says "grok" is needed? Grok says I understand, and I care.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Cheney and lerner come to mind stright away when cardiac issues are mentioned with cfs/me. dr lerner has documented issues with t wave abnormalities in cfs/me. T wave is apart of the ECG which indicates the resting phase of the heart and is when the heart muscle gets its oxygen and nutrients.

The issue with our cardiac problems is not that we don't know we have them, but that large scale epidemiological studies have not happened. Its hard to convince some people without that.
 

SOC

Senior Member
Messages
7,849
My doctor ran bloodtests, and found my kidneys on the brink of failing back in April already and other signs of malnutrition. I also lost 8 kg within a couple of weeks. He is concerned, but there is little he can do. I am dependent on the foodbank for lack of money. Other people just comment on how well I look after the weight loss.

It's a terrible thing when the impoverished are becoming increasingly ill from malnutrition. What kind of society are we?

When my MIL was dying of ALS (Motor Neurone Disease), she could not swallow. Eating was not an option for her. She got prescription liquid feeding which included (theoretically, anyway) all the major nutrients as well as fiber. People in a coma don't die of malnutrition. Surely those with other eating difficulties should be able to get prescriptions for support feeding. And people too poor or disabled to feed themselves should get access to at least some supplemental nutritional support. That's just basic decency.

Yeah, I know, "should" does not mean it happens. :( Still, for someone to die of malnutrition in a developed country with health and social services available is ridiculous.
 

SOC

Senior Member
Messages
7,849
The issue with our cardiac problems is not that we don't know we have them, but that large scale epidemiological studies have not happened. Its hard to convince some people without that.

Yeah, and HHS is issuing an expensive contract to reinvent the wheel. :rolleyes:
 

heapsreal

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Messages
10,089
Location
australia (brisbane)
The issue with our cardiac problems is not that we don't know we have them, but that large scale epidemiological studies have not happened. Its hard to convince some people without that.
no large studies on much at all with cfs/me but we need someone to replicate say lerners work on t cell abnormalities, maybe then it will be better well known.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
[Fromepeggy-sue, post: 389340, member: 5492"]The T-wave is also the time period where the left ventricle repolarises, in order to gain the momentum/energy to shove its contents out.
In PWME it is often found to be flat or even inverted, demonstrating insufficient power in the left ventricle to get the blood around.

I haven't managed to get my gp to do an ECG trace on me, but I did get one in A&E when I had a recent sojourn there.
I do not have a flat or inverted T-wave. :)[/quote]
From memory the t wave abnormalities are picked up on a 24hr holter monitor not a regular ecg. Maybe only occurring intermittently? ??
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
Flattened T waves can be associated with low potassium.

I am very underweight, but I had to ask my doctor to do something about it. The doc was preoccupied with other things when I came in. (important things; they are a good doc)
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
Heapsreal said;
"From memory the t wave abnormalities are picked up on a 24hr holter monitor not a regular ecg. Maybe only occurring intermittently? ??"
That is what I asked my gp for, but got refused. I was in A&E for a couple of hours, wired up, but I only managed to get a snapshot glimpse of the trace. I did ask the nurse if my T-waves were ok though.

I had stopped fretting about my T-waves! :p

We appear to have gone a bit off-topic and in a rather disrespectful manner considering the dreadful and shocking subject matter.

It's been a few days now, is there any more news about how this happened to this chap?
Is there going to be an inquest?
Children dying of malnutrition and starvation here make the headlines, why not him?

Were any social services involved?
 

u&iraok

Senior Member
Messages
427
Location
U.S.
Rosie, I don't know how long he was ill but Mg deficiency is very common with ME. It can lead to sudden death. I was scary sick 13yrs ago when my levels were so low that the biochemist couldn't understand how I was still walking!

http://www.ncbi.nlm.nih.gov/pubmed/1636608

That's funny, that's exactly what my naturopath/nutritionist said about my extremely low magnesium levels, that he couldn't understand how I was still walking!! One reason was a messed up digestive system so that I wasn't absorbing nutrients. Also, I had never taken vitamins and was eating the Standard American Diet which naturally means I wasn't getting all the nutrients I needed. (I actually found this thread/topic/posts because I was researching CFS and malnutrition.)

Also funny is that I had so many low levels of many vitamins/minerals/nutrients and low adrenals other health issues (right before I got CFS) yet I could walk into a doctor's office, get a physical and the doctor would say I was healthy and normal with blood pressure on the low side like that of an athlete! Hahahahaha!!
 

Shell

Senior Member
Messages
477
Location
England
What I find odd about this is how the story stops where it does - with the poor guy being found dead of natural causes. So what's next? Nothing? So someone with a chronic illness dies alone of heart failure and malnutrition and there's nothing else to do or say about it? No review of the system that allowed that to happen?

My experience of inquests is that nothing happens. Even when really bad stuff starts happening - still nothing happens.
After a bought of suicides when i was still working we got the most extraordinary message sent from the Lord High Manager Medic telling us to put patients at risk on obs until the media stopped paying attention!!! Seriously!
My friend's inquest had the psychs given a telling off by the Coroner and that was that - they could shrug, go back to work and fail some more seriously ill patients.

I'm afraid I think inquests are a complete waste of time.

Also wanted to say how sorry I am for those of you who have been so close to starvation. It shouldn't happen. There's no excuse in a society where there is so much and where some people eat out so much, for people to be left to starve because they are ill. God forbid I ever let that happen to anyone of my family, friends or neighbours.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Do we know anything else about the post-mortem? Any signs of inflammation, like the dorsal root ganglionitis found in another ME sufferer that died a few years ago?

The dorsal root findings are only if the post-mortem is done by someone with an interest in ME and if they are contacted in enough time and in the right conditions to be able to carry it out.

The average ME patient who dies doesn't get a post mortem that shows these abnormalities. Poor Paul Hancock died alone by the sounds of that report and his body only found when the neighbour became concerned and called the police.

Even in death ME patients don't get the care they deserve.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
After a bought of suicides when i was still working we got the most extraordinary message sent from the Lord High Manager Medic telling us to put patients at risk on obs until the media stopped paying attention!!! Seriously!

That is revealing, and shocking - but not surprising, if that makes sense.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
The dorsal root findings are only if the post-mortem is done by someone with an interest in ME and if they are contacted in enough time and in the right conditions to be able to carry it out.

The average ME patient who dies doesn't get a post mortem that shows these abnormalities. Poor Paul Hancock died alone by the sounds of that report and his body only found when the neighbour became concerned and called the police.

Even in death ME patients don't get the care they deserve.

If I had died after my first attack of severe hyponatraemia in 2007, almost-certainly due to over-exertion while having ME, but dismissed by GP and paramedics as a panic attack (!), I am 100% certain that any inquest would not have mentioned ME. In fact, judging by what the doctors kept insisting after my second attack in 2010, any report would probably have put it down to something I was doing - in other words, blaming me for my own death. :mad: