• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

A long-standing friend and member of PR has died through lack of medical support

Countrygirl

Senior Member
Messages
5,429
Location
UK
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.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
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.
 

Gingergrrl

Senior Member
Messages
16,171
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:

Countrygirl

Senior Member
Messages
5,429
Location
UK
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.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
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.
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
Oh my God, @Countrygirl, I am so sorry to hear this horrible news. Was he a current member of PR and at some point will we be able to learn who it was? (I mean by his PR name, not his real name of course).

It's another sad day for our community.

@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.
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
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.

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.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
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:

Daffodil

Senior Member
Messages
5,875
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
 

undiagnosed

Senior Member
Messages
246
Location
United States
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.