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ME patient found dead of heart failure and malnutrition

Discussion in 'General ME/CFS News' started by Countrygirl, Sep 19, 2013.

  1. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    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.
    Valentijn, SOC and Sasha like this.
  2. Guido den Broeder

    Guido den Broeder *****

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    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.
    Sing, ahimsa, irwinsturtle and 3 others like this.
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    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.
    Sing and WillowJ like this.
  4. Daffodil

    Daffodil Senior Member

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    severe inflammation for years does damage to the arteries too
    sleepy237 and heapsreal like this.
  5. peggy-sue

    peggy-sue

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    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. :)
    WillowJ likes this.
  6. alex3619

    alex3619 Senior Member

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    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.
    PennyIA, leela, Sing and 11 others like this.
  7. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    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.
    Sing, Shell, irwinsturtle and 6 others like this.
  8. SOC

    SOC Moderator and Senior Member

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    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.
  9. SOC

    SOC Moderator and Senior Member

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    Yeah, and HHS is issuing an expensive contract to reinvent the wheel. :rolleyes:
    Shell likes this.
  10. alex3619

    alex3619 Senior Member

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    Oh dear, and OMI IOM came up with a triangle for the GWS wheel, didn't they? At least we can hope for an octagon ... a bit bumpy but at least the wheel might turn. I am not even holding my breath for an ellipse.

    PS Brain glitch, doh. OMI is an organization I like.
    SOC and Valentijn like this.
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    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.
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    [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? ??
    Sing and peggy-sue like this.
  13. WillowJ

    WillowJ Senior Member

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    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)
  14. peggy-sue

    peggy-sue

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    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?
  15. alex3619

    alex3619 Senior Member

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    Does anyone have a link to more detailed information about this case?
  16. u&iraok

    u&iraok Senior Member

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    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!!
  17. Shell

    Shell Senior Member

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    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.
    PennyIA, maryb, rosie26 and 8 others like this.
  18. ukxmrv

    ukxmrv Senior Member

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    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.
    peggy-sue, maryb, rosie26 and 2 others like this.
  19. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    That is revealing, and shocking - but not surprising, if that makes sense.
    peggy-sue and Shell like this.
  20. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    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:
    sleepy237 and peggy-sue like this.

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