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ME patient found dead of heart failure and malnutrition

Sasha

Fine, thank you
Messages
17,863
Location
UK
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?
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Any idea why he was malnourished? I can see one of us dying suddenly of heart failure, but malnourishment (Is that a real word? o_O) shouldn't be a problem unless there was severe medical or social neglect.

I was malnourished in the early stages of ME, due to a combination of poverty and persistent vomiting and diarrhoea.

I believe this is common.
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
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?

Thats exactly what I thought Sasha, no-one asking questions, the coroner? the family? the reporter?
So cfs deaths are due to natural causes? what an easy way out for everyone.
So if you died of AIDS it would be recorded as natural causes? pah..........
 

Mij

Messages
2,353
I believe we can die of malnutrition with this illness. I had severe deficiencies for years, omega 3, magnesium (to the point I had Parkinson's like symptoms) my heart would RACE and I couldn't sit still. Who knows where I'd be today if I didn't have a good doctor who rx'd magnesium injections for years because I was not absorbing it from capsules. It all costs money and if you don't have the finances to pay for it, then what? You continue to decline.

Very sad.
 

rosie26

Senior Member
Messages
2,446
Location
NZ
I am 12 years in to my ME and I still struggle to stay on top nutrition wise.
I feel like I am behind a lot always trying to catch up . When my symptoms improve, I eat and eat and get as much goodness into me before the next bout of relapse hits. I find it nearly impossible not to go over my limits.

ME causes problems with the heart, if the poor man didn't have ME, I suspect he would not have died of heart failure. I have felt close to heart failure myself, it is not surprising to me. This is a serious illness. x
 

SOC

Senior Member
Messages
7,849
I was malnourished in the early stages of ME, due to a combination of poverty and persistent vomiting and diarrhoea.

I believe this is common.

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.
 

rosie26

Senior Member
Messages
2,446
Location
NZ
I don't think malnutrition was the cause of death, it would have been the heart failure due to the suppressive nature of ME on the heart. The body can survive malnutrition for years I would think. I wonder how long this man had ME ?
 

Mij

Messages
2,353
I don't think malnutrition was the cause of death, it would have been the heart failure due to the suppressive nature of ME on the heart. The body can survive malnutrition for years I would think. I wonder how long this man had ME ?

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
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Malnutrition can kill in weeks, I think. It depends on the type of malnutition. Outright starvation for example takes about a month to kill most people. Severe essential fatty acid deficiency will shut down production of most of the really important hormones in the body, and (possibly) prevent sleep entirely.
 

Sea

Senior Member
Messages
1,286
Location
NSW Australia
My father went on a crazy weightloss diet once. Took in nothing but fruit juice and vegetable juice. After 6 weeks he had a heart attack and the cardiologist determined it was the lack of protein intake that was behind it.
 

Tito

Senior Member
Messages
300
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.
According to my experience (at some point, I weighted under 5 1/2 stones), it does not even cross doctors' mind that malnutrition may lead to death, unless you have a diagnosis of anorexia nevrosa. To them, malnutrition is something you see on TV about Africa. It cannot happen in rich countries. In my case, no one was concerned. When I raised the issue that I lost 2 stones in 10 months, my comments were met with a smile and a "then stop dieting...". I tried to explain that I was eating (300gr of meat a day etc.) but I was never being taken seriously. As we all know, ME/CFs is just a "state of mind" isn't it? :/
It nonetheless remains a fact that there is no real treatment for catabolic states not caused by insufficient intake. It is the problem with Aids patients. Catabolic states are bad news. There is no easy way to reverse these.
Doctors are so obsessed with CBT, positive thinking, and other bs that they do not even wonder whether patients eat enough, can cook, etc. They assume there is a little army of carers behind each patient, ready to cook on demand. The reality for many patients is that if they feel too weak to get up to get some food one day, they'll just have to wait for the next day to eat... :(
 

SOC

Senior Member
Messages
7,849
Agreed. Most people think of malnourishment as insufficient energy dense food such as carbs, but it can occur due to deficiency of key nutrients. If he was eating nothing but canned or packet carbohydrate for example, for long enough, that would do it. So would having no essential fats in the diet including from meat or similar. So would a variety of intolerances that restricted his diet. If severe diet restrictions combined with incapacity to shop or cook, and nobody was checking on him, that could also be fatal.


I certainly would hope that starvation would have been noticed. I doubt this poor fellow was starved, but still.... malnutrition to the point where it is listed as a cause of death should not have been missed if the guy was seeing a physician, which it appears he was. A deficiency of key nutrients to the extent of being a cause of death would have symptoms as well as show up in labs, wouldn't it?

I can see how malnutrition could happen to someone with ME. What I'm struggling with is that he was under the care of multiple health professionals none of whom noticed severe malnutrition. There are, after all, prescription liquid diets, and probably other forms, for people who have serious dietary restrictions so they don't die of malnutrition.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I can see how malnutrition could happen to someone with ME. What I'm struggling with is that he was under the care of multiple health professionals none of whom noticed severe malnutrition. There are, after all, prescription liquid diets, and probably other forms, for people who have serious dietary restrictions so they don't die of malnutrition.

I'd like to remind people that they did notice he had issues, his psych said he was pale but choose to ignore this.
...............

I was underweight at one point.. got down to 47-48kg due to my health issues and was trying to seek help but the doctors didnt care. Thankfully I dont have any weight issues now and could probably right now do with loosing a couple of kgs (when I eat I nowdays tend to binge...possibly I do that cause I dont know if I will be well enough to get my next meal so during a meal now I eat 3-4 times what I probably need) .

When I went to Dr David Michellmore and told him I was only eatting often once a day due to being not well enough to cook and get myself food, his reply was "try harder". That reply of his was quite upsetting as I was telling him how horrible it was for me missing so many meals and sometimes going to bed hungry.

I went home and did actually try harder after he said that, that night I made an even bigger effort when I usualy would of gone straight to bed being too physically exhausted to cook and due to being so tired, I still now carry the scar on my hand from that cooking attempt 5-8mths later (I got my worst burn yet within 24 hrs of him telling me to try harder and me doing so, trying to do things when I was in no state to be doing them).
 

Mij

Messages
2,353
SOC said, I can see how malnutrition could happen to someone with ME. What I'm struggling with is that he was under the care of multiple health professionals none of whom noticed severe malnutrition. There are, after all, prescription liquid diets, and probably other forms, for people who have serious dietary restrictions so they don't die of malnutrition.

I'm not sure they would have noticed that he was severely malnourished if key minerals, omega fatty acids etc were dangerously low unless they took blood samples? How many mainstream doctors check this? I looked fine but was considered "malnourished" because I was not absorbing nutrients from food despite a healthy diet.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
They assume there is a little army of carers behind each patient, ready to cook on demand. The reality for many patients is that if they feel too weak to get up to get some food one day, they'll just have to wait for the next day to eat... :(

Yes. Further, when I got hit with a lot of bills all at once in about 2008 I had most of a week fasting as I had zero money for food. Prior to that I was living on a daily small bowl of rice, with a spoonful of frozen vegetables, and an egg, for some days. So I wound up drinking lots of ice water to quell hunger.

Many of us live very close to the poverty line. It doesn't take much to force us below the starvation line.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
SOC said, I can see how malnutrition could happen to someone with ME. What I'm struggling with is that he was under the care of multiple health professionals none of whom noticed severe malnutrition. There are, after all, prescription liquid diets, and probably other forms, for people who have serious dietary restrictions so they don't die of malnutrition.

I'm not sure they would have noticed that he was severely malnourished if key minerals, omega fatty acids etc were dangerously low unless they took blood samples? How many mainstream doctors check this? I looked fine but was considered "malnourished" because I was not absorbing nutrients from food despite a healthy diet.

[Satire] What, alternative medicine? No self-respecting doctor would run those tests! [End Satire]

Seriously, doctors are given incentive to not run tests, and disincentive to run tests, way too often these days. Personally I think an enquiry is necessary in this case.
 

rosie26

Senior Member
Messages
2,446
Location
NZ
The UK medical establishment really needs to take a good hard look at themselves.

Heart failure is the number one cause of death in CFS. Second is cancer. Third is suicide.


Daffodil - those results make perfect sense to me. Our hearts are the most vulnerable in ME. In my severe years it was my heart that I felt would give way and cause my death more than anything else.

Regarding malnutrition - I think all ME patients should have meal replacement drinks and so forth always in stock in the house.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I took a brief look at suicide and possible suicide rates in CFS a few years ago. For the limited data (and I no longer recall much of what I was looking at) it seemed that CFS has a suicide rate about double that of major depression. Yet nobody takes this seriously.

A CFS society in the state of Victoria (Australia, not Canada) did a survey some years ago. One in ten CFS patients admitted having attempted suicide, and one in six long term patients. That's not small numbers. Given I think it was Jason's study some years back showed suicide rate at about one in five, its clear the medical community likes to ignore issues ... else why would we be ignored.

I think a year or two back it was also shown that we do indeed have elevated lymphoma risk. Does that sound like a psychogenic illness?

The data on heart failure and multiple organ failure is less clear, but still compelling. In particular many of us have measurably reduced cardiac function.