A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
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A long-standing friend and member of PR has died through lack of medical support

Discussion in 'General ME/CFS News' started by Countrygirl, Aug 28, 2016.

  1. Countrygirl

    Countrygirl Senior Member

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    Very sadly, I have to report the death of a dear friend of mine of nearly 30 years who joined Phoenix Rising at my suggestion after he became very ill following a series of tick bites from an infected area.

    He became ill last autumn and has been struggling to cope with the horrible symptoms that overwhelmed him and recently his illness had taken a turn for the worse.

    He did his best to follow advice on PR, but his brain was so badly effected that he couldn’t cope with reading.

    We have spent many, many hours on the phone to each other as I tried to find him a suitable place for him to stay where he could be cared for and a doctor that would treat ME/Lyme seriously.

    Sadly, he was dismissed by the medical profession who provided virtually no appropriate support to a very ill man. We both did all we could to find medical help for him but with no success.

    He wrote a note for his cleaning lady to tell her to call the police and not to go into the garage on Tuesday. He had tried once before and I interrupted his attempt just in time although it left him with rope burns on his neck. I phoned the GP immediately, hoping he would visit my friend. All he did was to post a prescription for tranquillisers through the letterbox. This time, my friend was successful.

    If only a GP had at least been prepared to offer sympathetic support it would have made such a difference, but it just doesn’t happen.

    I am very sad at the loss of my friend of many years (and am trying not to be really angry at another unnecessary death as the result of medical negligence.). If only the medical profession would take these diseases seriously.
     
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  2. Snowdrop

    Snowdrop Rebel without a biscuit

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    I am truly sorry to hear this @Countrygirl . It's horrifying and sad. I'm sorry for your loss.
     
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  3. Invisible Woman

    Invisible Woman Senior Member

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    I'm so sorry @Countrygirl. It sickening to think of the suffering that could easily be alleviated by a bit of support from the authorities and the "caring" professions. Just treating folk with a bit of respect - even if there is no current cure for the original illness.

    So sad.
     
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  4. alex3619

    alex3619 Senior Member

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    I am very sorry for you, for him, and for others who cared about him. I do not blame him in any way, nor should anyone. I blame the failures in society that lead to these hard choices.

    The UK is a dire place right now for the sick and disabled, with thousands of unnecessary deaths every year (and its probably been on the order of 30K deaths a year for the last few years). Its not just ME that has issues, though we lack even proper recognition of our problems. The traits that made the UK great are slowing decaying. I would love to see things change for the better.
     
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  5. Gingergrrl

    Gingergrrl Senior Member

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    Oh my God, @Countrygirl, I am so sorry to hear this horrible news. Was he a current member of PR that we knew? (I mean by his PR name, not his real name of course). There are so many who disappeared from PR that I have been really worried about.

    My deepest condolences to you on the loss of your dear friend and may his memory be a blessing for you in the future as the pain lessens. I once witnessed a suicide of someone I knew and it was quite traumatic even now, many years later to think about. But please know you did all you could and the system failed. You were an amazing friend to him.

    It's another sad day for our community.
     
    Last edited: Aug 28, 2016
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  6. Countrygirl

    Countrygirl Senior Member

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    Thanks @snowflake. Yes, I am gutted tbh and feeling shocked still. He left a note with my phone number on it and asked whoever found him to ring me which they did earlier today. He was my long-standing friend of decades and struggled so hard to cope with this miserable illness. Whether it is correct to say he had ME, I am not so sure, but there was a great overlap in symptoms and it followed several tick bites from an infected area.

    Apparently he catalogued his communications with various doctors and has left a note to say he wants this evidence of medical negligence to be passed on to the coroner. I am hoping to be able to give a statement to the police and will make it clear why my friend was driven to take his life.
     
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  7. Countrygirl

    Countrygirl Senior Member

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    Thank you @alex3619 and @Gingergrrl .

    Yes, it is very distressing. Shortly before he died he sent me a 'Thank you' card. I am sad that I removed it from my mantle piece a few days ago and threw it away. I wish I had kept it now.
     
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  8. Sidereal

    Sidereal Senior Member

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    I'm very sorry for your loss, Countrygirl. So many people killed by the medical system. Very sad.
     
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  9. alex3619

    alex3619 Senior Member

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    I liked your last post @Countrygirl (edit: second last post, I was too slow) but its hard to like any of this. I hope the coroner takes things into account and makes a public finding about the state of medical care, with recommendations. I hope you can cope at least OK. I guess its hard to cope well. I am agreeable (I can't say happy given the circumstances) you will make a stand in your statement to the police.
     
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  10. Countrygirl

    Countrygirl Senior Member

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    @Gingergrrl Yes, he was a current but fairly new member of PR although I think he had exchanged PMs with some people here. I certainly recall him mentioning Hip on a number of occasions. He didn't tell me his PR name, and he had become too ill to communicate much recently. I was passing on information to him from PR and was about to phone him to tell him of the new paper coming out at the end of this month. I tried to pass on anything that gave a crumb of hope for the future.
     
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  11. Countrygirl

    Countrygirl Senior Member

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    Yes, I want to make it clear to the coroner why my friend died. I heard that another friend of his whom I have never met feels very strongly about the lack of medical help given to a someone who was so ill.

    A few weeks ago I was so concerned I kept him talking for eight hours on the phone as I was convinced he would take his life that day. I then phoned the mental health crisis team (the doctor had given him a diagnosis of depression) and although their involvement was not appropriate(he needed medical help) I made a call to them as I was so worried. The woman who answered the phone ......................now how can I put this?.............well, to be frank, she ........I hate writing this................she jeered when I said I believed my friend needed urgent intervention. Nothing was done. I will pass this on to the coroner if I can get the opportunity.
     
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  12. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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  13. shannah

    shannah Senior Member

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    Another loss ... So tragic ... Sad ... Angering ... So much needless suffering ... My heartfelt condolences @Countrygirl ... So sorry
     
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  14. Bob

    Bob

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    It's so sad to read about this, @Countrygirl. I'm so sorry that you and your friend have been through such pain. As others have said, you are a good friend. Unfortunately, too many of us know how it feels to not be able to find our friends adequate support at their time of greatest need. We desperately need decent inpatient support for when people hit their lowest period. Best wishes to you, countygirl.
     
    Last edited: Aug 28, 2016
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  15. Daffodil

    Daffodil Senior Member

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    this is so tragic. cannot put into words how sad it is. and how much I loathe the UK.

    why won't someone take up the cause there? someone with power? I don't understand. how many have to die???

    dr. enlander sent a letter to the queen over a decade ago begging her to do something. she did zilch

    those selfish bastards have blood on their hands
     
  16. Countrygirl

    Countrygirl Senior Member

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    I am trying so hard not to explode with anger as I need to keep cool if I am to be able to give a statement. It is important not to show emotion as it undermines your case............so thanks for saying it for me Daff.

    Many thanks for your kind words @Bob and @ScottTriGuy
     
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  17. undiagnosed

    undiagnosed Senior Member

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    I'm very sorry Countrygirl. It's a tragedy when we are in need of help and left to fend for ourselves by the system that's supposed to be there for us. There's only so much you can do when your health is failing. It's frustrating that the only option left for your friend to relieve their suffering was to end their life, but sometimes that's the last bit of control a person has.

    In the US, diagnostic errors are estimated to affect at least 1 in 20 adults. Does anyone know if there is any activism campaign to raise awareness of negligence cases? It could include not only CFS related cases, but all negligence. We could honor your friend and help increase awareness of the problem.
     
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  18. Groggy Doggy

    Groggy Doggy Senior Member

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    @Countrygirl

    You are sweet and kind and did so much to help your close friend (and save him). Our community is grieving with you today. We are here if you need us. :heart::heart::hug::bouquet::bouquet:
     
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  19. Nielk

    Nielk

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    @Countrygirl - I'm so sorry for your loss. As others have stated, you have been a great friend to this person/patient - even though I'm sure at times it took a toll on you as well. Thank you for your support to someone in need.
     
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  20. daisybell

    daisybell Senior Member

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    @Countrygirl I am so sorry.... i hope that it will be some comfort in the future to know that he is no longer suffering. I also hope that his death may serve as a wake-up call to those in the medical system who failed him so badly.
     
    barbc56, L'engle, leela and 3 others like this.

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