So sorry for you and your friend's family @Countrygirl. Make sure you get the rest and support you need at this time.
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A long-standing friend and member of PR has died through lack of medical support
- Thread starter Countrygirl
- Start date
Daffodil
Senior Member
- Messages
- 5,875
this is because there is simply no agreed upon treatment. that is why. someone has tried to sue the govt there so he could get valcyte but he lost. i dont know how many studies they want...but its probably more than one and it has to be large scale. i just dont know.
Daffodil
Senior Member
- Messages
- 5,875
Canada is bad yes...but at least we can get disability without too much of a fight. my GP said i would NEVER Get it...that he knows people with MS who are turned down....but i got it on the first try. at least someone here knows how serious it is. someone in toronto anyway.
but yes...canada has a million shortcomings
Daffodil
Senior Member
- Messages
- 5,875
God i am so upset my blood is boiling and its causing the inflammation to worsen. THIS IS WHAT THOSE FKING ASSHOLES COUNT ON. we are too sick to do anything!!!!!
mfairma
Senior Member
- Messages
- 205
With every year that passes, the ball of emotions that I feel whenever someone in this space commits suicide shifts more and more from horror and grief and heartbreak at the emptiness and brutality of vigorous and wonderful people suffering and dying alone and anger and bitterness at all the people that create and prop up the system to resignation and nihilism.
Mostly, I despair at the relentlessness and inflexibility of the system, and the coldness and inhumanity of the people that prop it up or are uninterested in challenging it, from the doctors who choose not to listen, the journalists who choose to write in other spaces, and the family members and friends who choose to forget. But, partly, whenever a patient commits suicide, I despair at us.
We should be throwing ourselves on the track, but, each time this happens, we, or at least I, become a little more inured to the normality of such cruel and desolate tragedy. When I was much sicker and more desparate and younger in this disease, I felt the fire and urgency and shortness of time, but less sick, less pressed, and older in this disease, I find the furious, righteous anger giving way to emptiness and nihilism. I find it easier each year to forgive myself as I become progressively less willing or able to encompass the suffering of others and less driven to fight against it.
There is blood on others' hands, but, I think, my hands are not so clean, our hands are not so clean. Where is the willingness to respond in ways that match the urgency? I didn't see it when I first got sick, in the years when I still had spirit, and I still don't. I judge my family and friends negatively who skate on in their own lives as mine becomes an increasingly distant footnote to theirs, but how am I different for prioritizing my own little life over those who suffer more? It is not right that each of us suffers, but it is also not right that we compartmentalize these tragedies and set them aside to get through our day, while the scale of suffering grows. Where is the risk of life and limb and health and security that could at least do justice to it?
Why hasn't there been a real hunger strike? Why haven't we chained ourselves to HHS or Congress (or NHS and Parliament)? Why haven't there been any real lie-ins? Why don't we graffiti HHS (NHS) and throw eggs? Are we all just too sick and too pressed or have we just become too used to this horrible normality? We are not the problem, we didn't create it and we don't own it, but I feel each year less of a need for absolution in how I choose to live my life and that crushes the part of me that still thinks suffering matters, that still thinks the cosmic weight is too great to continue waiting and hoping and putting energy into soft measures.
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South
Senior Member
- Messages
- 466
- Location
- Southeastern United States
Is there a thread yet where we can post advocacy type links? I know of a site that has anonymous doctor reviews, and the site does have a UK section.
caledonia
Senior Member
- Messages
- 4,610
I'm very sorry for your loss. I've been in a similar circumstance.
Be kind and nurturing to yourself at this time.
Be kind and nurturing to yourself at this time.
undiagnosed
Senior Member
- Messages
- 246
- Location
- United States
Doesn't appear to be, why don't you start one and we can discuss the website you alluded to and other possibilities.
frog_in_the_fog
Test Subject
- Messages
- 253
- Location
- California
Getting help should not be up to luck and good fortune. Everyone should be entitled to competent medical care especially if a treatable malady is suspected. It is so sad when people are lead down the wrong path by the very professionals that should be helping them. Too often it is up to us to save ourselves, but what happens when one lacks the strength and support? Those voices fall silent.
We must fight for each other, especially for those who do not have a voice. Only then can we fight the good fight, knowing that we are working to make a difference for each and everyone of us.
http://millionsmissing.meaction.net/
We must fight for each other, especially for those who do not have a voice. Only then can we fight the good fight, knowing that we are working to make a difference for each and everyone of us.
http://millionsmissing.meaction.net/
Mary
Moderator Resource
- Messages
- 17,386
- Location
- Southern California
@Countrygirl - I'm so sorry to hear about your friend and his inexcusable neglect by the medical profession. I think some day we will have answers for lyme and ME/CFS, not because of, but rather despite the medical community at large. In the meanwhile, there is tremendous needless suffering, like your friend had.
Very upsetting to hear this. My deepest sympathy to family and thank you for being such a good friend @Countrygirl
Do take care and rest greatly at this moment @Countrygirl
My heart goes out to this dearest fellow sufferer who has taken his life. I have been to terrible places with this illness as well and know the places at the edge as I am sure many members here do. God rest your soul at peace forever now.
We will never forget you.
Do take care and rest greatly at this moment @Countrygirl
My heart goes out to this dearest fellow sufferer who has taken his life. I have been to terrible places with this illness as well and know the places at the edge as I am sure many members here do. God rest your soul at peace forever now.
We will never forget you.
Art Vandelay
Senior Member
- Messages
- 470
- Location
- Australia
I am so sorry for your loss. He was lucky to have a friend who cared as much as you.
Given that tick-borne illness is suspected, would it be worth bringing this to the attention of John Cauldwell? He has the clout and a media profile that the rest of us lack in the UK. He has also been very critical of the lack of care for people with suspected Lyme in the UK.
He seems to be quite active on social media, so you may be able to get a response there: https://www.facebook.com/johndcaudwell/
@Countrygirl It does not seem long since you were writing of the difficulties you were having with your health and I hope that the inevitable adrenalin induced activity in response to the anger and indignation which you will be feeling does not cause you problems. Look after yourself.
The telephone conversation which you had with the mental health crisis team sounds to be valuable corroborative evidence to support your late friend's claims. There must be a possibility that such calls to a crisis team are recorded and I wonder whether it would be worth calling the Coroner's officer to put into his head the idea that if there is such evidence it should be secured - whilst it is available.
One can just about accept that mental health services are under- resourced and unable to make suitable provision but what you report sounds appalling.
The telephone conversation which you had with the mental health crisis team sounds to be valuable corroborative evidence to support your late friend's claims. There must be a possibility that such calls to a crisis team are recorded and I wonder whether it would be worth calling the Coroner's officer to put into his head the idea that if there is such evidence it should be secured - whilst it is available.
One can just about accept that mental health services are under- resourced and unable to make suitable provision but what you report sounds appalling.
Oh no! This is terrible news. I am so sorry @Countrygirl.
Another heartbreaking loss.
I will be thinking of you and your dear friend.
Another heartbreaking loss.
I will be thinking of you and your dear friend.
Skippa
Anti-BS
- Messages
- 841
I am so sorry to hear this, I offer my condolences to anyone affected by this.
Grrrr.
The post above somewhere about doctors in a hospital saying "there is no such thing as ME" and "don't tell anyone else". That reminds me, for some reason, about the Met police and institutional racism. It makes me think that hospitals in the UK have an "institutional" something or other.
Institutional bullying of patients with no clear etymology perhaps.
Psych crowds... EVEN IF somehow AGAINST ALL ODDS you were correct that ME was all in our heads WHERE THE HELL IS THE EFFECTIVE TREATMENT. So you have convinced entire hospitals that there is no such thing as ME... well prove it and START MAKING PATIENTS BETTER THEN.
Grrrr.
The post above somewhere about doctors in a hospital saying "there is no such thing as ME" and "don't tell anyone else". That reminds me, for some reason, about the Met police and institutional racism. It makes me think that hospitals in the UK have an "institutional" something or other.
Institutional bullying of patients with no clear etymology perhaps.
Psych crowds... EVEN IF somehow AGAINST ALL ODDS you were correct that ME was all in our heads WHERE THE HELL IS THE EFFECTIVE TREATMENT. So you have convinced entire hospitals that there is no such thing as ME... well prove it and START MAKING PATIENTS BETTER THEN.
Gingergrrl
Senior Member
- Messages
- 16,171
@Countrygirl Please let us know how you are holding up when you can and we are here to support you.
I am so very sorry Countrygirl for the death of your friend. I remember you sharing the first part of this story with me some weeks ago, when you saved his life for the first time.
The behaviour of the medical professions towards him sounds mind bogglingly callous - the GP in particular. Unfortunately the Crisis Team response is only too familiar. I have researched my son's Mental Health Trust (Southern Health NHS Trust) due to bad publicity this year, and there have been a number of similar stories published, sadly. Mental health services are known to be in chaos and this is freely published. Not so the state of ME/CFS so-called treatment of course.
Thinking of you.
The behaviour of the medical professions towards him sounds mind bogglingly callous - the GP in particular. Unfortunately the Crisis Team response is only too familiar. I have researched my son's Mental Health Trust (Southern Health NHS Trust) due to bad publicity this year, and there have been a number of similar stories published, sadly. Mental health services are known to be in chaos and this is freely published. Not so the state of ME/CFS so-called treatment of course.
Thinking of you.
Countrygirl
Senior Member
- Messages
- 5,476
- Location
- UK
'Morning Everyone (well, it is morning here in the UK..............you can tell it is a Bank Holiday as we are enveloped in a thick mist)
It won't be until tomorrow at the earliest that I can ring the Coroner's office.
@Daffodil and @alex3619 both suggested we start a separate thread to organise some advocacy in the wake of my friend's death.
As I drink my mugs of morning coffee, the following thought is rattling round my brain. Is there any mileage in the idea of us writing to the coroner's court as a group.....perhaps even in the name of PR as my friend (can we refer to him as 'M'? ...............) joined here, although I don't think he had posted as yet as he became too ill.
I am just thinking aloud here:-
We could bring some good out of this distressing situation by using it to ensure that the Coroner learns how a prolonged history of deliberate government negligence has caused such suffering to a huge group of patients, many of whom have been driven to take their own life. If involving the name of PR is not appropriate, it can simply be done in my name. This is an opportunity, however, to ensure that the circumstances of very sick people in the UK are made known to a court and recorded in writing.
I would write M's personal story and give an account of how he struggled to obtain medical intervention and those of others in the area who have suffered a similar fate while everyone could post their ideas of what could be included in the letter. The suggestions could then be honed into a document suitable for presenting to a court.
The document could outline a brief history of the illness and how the situation in which we find ourselves has arisen. We have some excellent articulate advocates here and their contribution would be invaluable.
N.B. I suspect that 'M's diagnosis, if correctly assessed. would have been Lyme Disease, but the circumstances in which he found himself were so similar to those with non-Lyme ME (not sure if that is a valid description)
If people agree, we need a new thread under 'members' only'.
It won't be until tomorrow at the earliest that I can ring the Coroner's office.
@Daffodil and @alex3619 both suggested we start a separate thread to organise some advocacy in the wake of my friend's death.
As I drink my mugs of morning coffee, the following thought is rattling round my brain. Is there any mileage in the idea of us writing to the coroner's court as a group.....perhaps even in the name of PR as my friend (can we refer to him as 'M'? ...............) joined here, although I don't think he had posted as yet as he became too ill.
I am just thinking aloud here:-
We could bring some good out of this distressing situation by using it to ensure that the Coroner learns how a prolonged history of deliberate government negligence has caused such suffering to a huge group of patients, many of whom have been driven to take their own life. If involving the name of PR is not appropriate, it can simply be done in my name. This is an opportunity, however, to ensure that the circumstances of very sick people in the UK are made known to a court and recorded in writing.
I would write M's personal story and give an account of how he struggled to obtain medical intervention and those of others in the area who have suffered a similar fate while everyone could post their ideas of what could be included in the letter. The suggestions could then be honed into a document suitable for presenting to a court.
The document could outline a brief history of the illness and how the situation in which we find ourselves has arisen. We have some excellent articulate advocates here and their contribution would be invaluable.
N.B. I suspect that 'M's diagnosis, if correctly assessed. would have been Lyme Disease, but the circumstances in which he found himself were so similar to those with non-Lyme ME (not sure if that is a valid description)
If people agree, we need a new thread under 'members' only'.
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Gingergrrl
Senior Member
- Messages
- 16,171
@Countrygirl I think this deserves it own thread and although I know whatever action you take carries more weight from UK citizens, just in this thread you've got me in the US, Daffodil in Canada, and Alex in Australia (plus many, many others) who all are outraged and want to do something so it could show the UK government that the world is watching. I know it sounds so miniscule and I have no idea how to tackle the issue but support your ideas. It seems all misunderstood diseases are abandoned in the UK regardless of what label the person is given. Here, too, but nowhere at the same level.