The Needless Suffering And Loss Of A Fellow ME Sufferer

Blue Rose

I’m so angry. So very, very angry and upset.

A year ago a fellow ME sufferer posted this:
“I really feel like I give up… I cannot continue to see doctors. I have lost my career, my friends, my ability to drive, to grocery shop, to concentrate, but most importantly my health. I believe I will stop eating and just cease.

I no longer have anyone that can help me and I am about to lose my home. I have been housebound for a year and am not eligible for any assistance. I live in a second story apartment. I can barely care for myself let alone my poor cat.

He is suffering as much as I am now. He is 14 so I know if I call a shelter come take him they will kill him. I am devastated by this illness. In addition I have severe autonomic dysfunction and peripheral nervous system damage.

I ask God to please let me come home every night. My parents have helped me to the best of their ability but they are in their 70’s and have health issues of their own. I was a medical professional for 16 years. I took care of people with kindness and empathy.

I have been treated by physicians as garbage and just told to “exercise more”. I was a marathon runner, an athletic, a friend a daughter. Now I am nothing.”

She had vocal function damage and was unable to speak. 172 fellow ME sufferers and I (some of us also very severely affected) tried to support her online (the only way in which we can) to access essential services.

Today, I have heard that she is gone.
“On Tuesday August 7, 2018, after a long illness, she left us at the young age of 42.”

 💙💜💚

This is needless suffering and loss and horrifying to me.
We must keep on fighting for our right to equity of medical and social care. Even if we cannot advocate, we can bear witness.

 💙💜💚

Comments From The Community

This post was first published publicly on Facebook and received over 400 responses, below are just some of the comments received: 

Cheri: This medical abuse has to stop, how many others are dying right now without any support? I feel anger that we live in a society that has lost its empathy and compassion. May she rest in peace 

Matthew: One more off the books, their cull is sickeningly efficient, RIP

Brenda: U.S. offers no home health service for M.E., so that makes sense.

Sharon: This is so heartbreaking to read, so very sad and my heart goes out to you and her family. You can hear her desperation in her words and sadly it we all understand only too well how she was feeling.

We can raise awareness and campaign but only so much as our health allows us to. Until mindsets change and we are recognised and given the help support and understanding we so desperately need then very sadly this will become all too common.

I won’t stop raising awareness and campaigning as much as I can but it’s limited. What we could really do with is an MP or public figure, (maybe one who would know someone who suffers), to champion this and to bring it to people’s attention. I doubt we will see that any time soon though 😢 x

In response to Sharon: We have Carol Monaghan SMP who spoke at the Millions Missing Protest in Edinburgh, Scotland, on May 12th this year and who brought the debate on ME to the UK Parliament on June 21, 2018.

Joanne: There is such an injustice with this illness one day it’ll will be payback time and justice will prevail. We will fight on in your honour! RIP Anita i am so very sorry for your suffering xxx

Pamela: So sad to hear. Unfortunately this is reality, we lose so so much to this illness and for those who do have good days, that’s wot most people in our lives only see, they don’t see us at our worst xx

Dawn: This should not be happening….

Ashley: My heart has shattered reading this. May she rest peacefully in eternity. We need to fight for an autopsy for this woman. Another life taken by M.E. way too soon and they’ll write the COD as something unimportant, like always.

Elly: Heart breaking but thank you for sharing as we know it’s important. Nobody should live or die like this it’s so angering as well heart breaking.
I hope you’re friend can now rest in peace 💜 Big hugs xxx

Margaret: Tragic absolutely tragic

Eveline: How terribly tragic -this illness is SO CRUEL!! RIP -BLESS!!Gentle hugs!! xxx

Angie: This is affecting me profoundly, I could have written much of what she says. I’m completely alone bedbound etc etc…. And I know intimately that space of no end in sight and simply not wanting to be here. My heart and love goes out to her, and I’m absolutely certain she is now at peace and flying free.

Angela: Absolutely heartbreaking and unacceptable xxx

Molly: Oh no that is so sad. But its so true you can be treated as if your putting it on. I suffer from Fibramyalgia and my designated GP doesnt accept the disease so so sad xxc

Chantal: this breaks my heart … and understand how she gave up hope, I just recently was told by my control doctor (who checks if I should go back to work) to stop playing a victim and how it’s all in my head .. and you don’t even have the energy to get angry …(I have ME/CFS and fibromyalgia)

Jenni: Medical abuse at it’s finest.

Jane: This is so very tragic, no matter what an autopsy or cause of death. This poor woman died of neglect, ignorance and complete lack of compassion. May she now Rest in Peace and love.

Penny: Anita, can’t express today tho’ joining you in a sorrowful fury…..♥️

Robin: What makes me angry is lack of research. This is the 21st century from what I read doctors still don’t understand ME. According to Nancy Klimas research into male pattern baldness gets six times more federal funding in the US than research into ME/CFS. That is fucking crazy. It makes me angry. Thank you Anita for making me aware of this injustices.

Di: This is so heartbreakingly tragic

Julia: Until things change, we will see more of these stories, and more frequently as our numbers seem to be increasing. Very sad for this lady, and her family. May she now be at peace.

Shellie: Awful, absolutely awful, so very sorry that anyone should suffer like this. May she rest in peace 😢xxx

CharI’m so sorry for your loss, Anita. Such a heartbreaking story, one that keeps repeating itself in our community unfortunately and unnecessarily. Horrible neglect by inexcusable ignorance in this day and age. Sending you hugs 

Trish: This is so very sad. How do we even begin to process this. 😘 sending hugs Anita. Xx

Michele: Dear God! How truly terrible. May she rest in gentle peace now❤️🌿

Loylia: This is criminal…when will it all end..so so very sad.

Darci: That’s awful. The poor woman. I’m so sorry. I hope you and her family are coping ok. She’s not suffering anymore but it should never have come to this. Sending a hug.

Gail: So awful, so sad and totally unnecessary. We need people to listen!

Daphne: This stands out as one of the saddest cases, though undoubtedly and inexcusably there will be others equally desperate, and we have all heard of some. With her parents permission this letter ought to be seen right at the top of Government. Read out loud in Parliament to honour a voice that wasn’t ‘allowed’ to be heard. RIP young lady and may your soul fly freely.

Toki: This is heartbreaking, from the post I know who she was and I’m distraught. We will not let the archaic treatment of our disease continue to be just silently accepted and we’ll carry on fighting xxx

Adrian: That’s awful. What kind of society do we live in?

Beth: Very sad these people who are suffering ME. Etc are amazing,
Please never give up.

Patricia: Devastating. And a disgrace. There is absolutely no excuse for sick people not to be treated with care and empathy. Intelligent doctors LISTEN and LEARN from their patients

Debbie: Absolutely disgraceful!! So sad 😞 I hope she rip 💕

Brenda: I tweeted a screenshot of this to some government agencies now. Please re-tweet.

Rosemary: This is tragic beyond words. It is so wrong that this has happened. X

Lesley: Very sad at such a young age what is worse she was on her own. Is there no outreach any more by kindhearted people if not social services. We are saying it it is terrible. I have to think what I can do to advocate or help individuals like her.. (then later she added) I am going to speak to one of the officials from an ME organisation. The phone call is already arranged.

Sarah: This is exactly how I’ve felt for so long now its my normal.
Its a constant battle to carry on especially during each year’s fight to get benefits and healthcare.
At least she isn’t suffering anymore…💜

Julie: I am so very sad and sorry to hear this tragic story – one that is becoming too common 😢😢😢
Lots of love to YOU beautiful girl xxxx

Ros: Such dreadfull lack of care!!!

Jo: Disgraceful – I’ve shared this post

Janet: This post has deeply touched me, I think i saw a bit of myself in this lady in regards to have being a health care worker myself. I am both angry and sad at how she was was just abandoned. How can someone be left this way with no practical help , support , compassion or empathy.? How can we as a community help? Was there any services she had access to but didn’t know about? So many questions. I am going to look in to what is available in my own area regarding voluntary services, charities, local churches, and animal care as a cat lover myself, then see that this information goes to the right people. The problem with severe M.E is people become invisible to their community and they need to be known about, they need to have visible to themselves what is available not matter how small. RIP dear lady your story shouldn’t stop here.😥

Pat in response to Janet: This community on here helped all we could and offered advice where to get help and she tried many of them to no avail, sadly.
I agree something needs to be done.

Emma: I can’t bare the thought that she suffered so long just waiting…. negligence at it’s highest level possible. May she be at peace. 💔

Dorothy: That is so sad and should never have been allowed to happen

Chris: I get so angry with stories like these… Another life lost to M.E and glaring holes in support, care and infrastructure which let suffers fall through… Just after briefly reading this post it’s clear her life was miserable towards the end and death was an eventual release… Noone in the 21st century and living in a modern society should live and be left to die like this… Heartbreaking…. R.I.P x

Katie: It’s absolutely shocking how much avoidable suffering (and death) there is.

Irene: It’s so sad. We are supposed to be civilized countries

Miriam: That is so very, very sad and could happen to so many people who do not have someone determined to fight for them, and even then…

Sarah:  I have been feeling this same way lately, for many of the same reasons. Contemplating giving up as well. Some have shown me compassion lately but it’s still a struggle to hold on to that.

Pat: I am so saddened and upset by this. I remember this lady. She was calling out for help but no one was there.

Noreen: this is so heartbreaking and inhumane. I’m so sorry. Sorry for that poor lady, sorry that we live in a society and world where such suffering is not only allowed but is made.
What have we become?? 😢
May she Rest In Peace 💔 💙

My Comment: Borrowing the words of Khalid Al Ameri on August 10th in his indictment of another human rights abuse:

“We need to continue to speak up about these things.
We need to continue to call out the wrongs when we see them.
Because, if we don’t ‘see’ anything, and we’re silent, the message we are sending out to our communities is
‘Things like this are okay’ – when clearly they are not.
And, if we let them go, we are [complicit].
In this day, today, on our watch, that CANNOT happen.”

Be that the gaslighting of 250,000 ME sufferers by the GMC, or the death of yet another young woman through neglect.

Grievous Bodily Harms

“Grievous Bodily Harms”
(One of the many reasons why I’m an advocate for raising ME-Awareness)

justice

Imagine this if you can/will:

You receive a letter from an official government body accusing you of an ‘offence’, purportedly committed in 1979 (38 years ago).
Your only defence – you were unaware that your action was an ‘offence’. (Ignorance is no defence in law)
Your understanding – at the time of the event it was not an ‘offence’ and probably is not today.
Notwithstanding, your livelihood and your reputation are at stake.

Despite suffering from cognitive impairments and multiple physical impairments, you have been immersed in assembling and presenting evidence to support your defence every day, for the past 5 months.
You cannot afford to pay for the services of a professional solicitor, lawyer or barrister to help you with this.

Throughout the case, your testimony has been disregarded variously as ‘hearsay’, ‘anecdotal’ and unproven without witnesses.
Any evidence which you have been able to provide, via your 5 witnesses, has not been believed and has been disregarded. This is despite having been told that their testimonies, specifically, are “VERY IMPORTANT”.

Even evidence previously generated by the system itself is also disregarded as too historical and not contemporary enough.
Finally, it is stated that there is “too much contradictory information from different sources to provide a robust defence and one that will accurately reflect the plaintiff’s position.”

Eventually, a person with some wisdom and experience in such cases advises you to seek a professional witness who could assist in your defence and who could provide written, formal, supporting evidence.

By then the judicial process has progressed and you are forced to undergo cross-examination.
Your requests for a paper-based review of your case are flatly refused.

As you are totally bedbound and only intermittently verbal, the cross-examination is to take place in your bedroom.
The judicial process has also been chaotic, unjust and incorrect and your health has further severely deteriorated.
At this point, instead of being declared unfit for trial, you are coerced into answering your case, as the only way for a decision to be reached (knowing that this will be harmful to your health and having informed the clerks of this).

One Sunday, in 2017, over 5 months since the onset of the prosecution, you are due to be questioned “Between 3–5 PM”.

At 7:24 AM you lie down to sleep for the “night” (suffering from sleep-onset delay, which has now become sleep-reversal. This fact is disregarded by the judicial process).

At 11:00 AM, after 3.5 hours’ sleep, you are woken as your night-time Carer leaves and your Senior Carer arrives to take over your care and, later, to give their testimony.

At 2:20 PM, with only half of your care needs met, your Senior Carer finishes assisting you to eat (spoon-feeding and assistance with drinks).

At 2:30 PM, your professional witness is due to arrive and another, second PA, arrives to support you with your physical care-needs, during and after the cross-examination, as your Senior Carer will be giving evidence.

By 2:46 PM, your professional witness has still not arrived and an urgent call is made.
Due to a miscommunication, the professional had thought that their services were not required. All haste is made for them to get to your home in time to give their evidence.

At 2:50 PM, you brief your Senior Carer on the running order of the day.

At 3:00 PM, the prosecutor is due to arrive.

At 3:05 PM, the professional witness arrives and hurriedly appraises the brief and the background to your case.

At 3:15 PM, As usual after eating, and worsened by the day’s exertions so far, you are overwhelmed with physical symptoms.
You are assisted to lie down.
The room is silent, dark and your eyes are covered.

You are experiencing a very severe adrenaline surge, tachycardia, palpitations, burning in the legs and face, neck pain, full-body pain, dehydration and sweats.
You are no longer able to speak and can only answer closed questions, asked by your Carer about your care needs, with a thumbs-up, “Yes”, or a wag of the index finger, “No”.

At 3:20 PM, the prosecution official arrives and is shown into the Carers’ bedroom (the only other available room you have).

At 3:27 PM, the official enters your bedroom and apologises for their visit. They express that it should have been “an open and shut case” and that they feel there should be no case to answer anyway.
Also, that they will hope to establish that you should not have to go through this again.
They will, nonetheless, need to hear the evidence from your 2 witnesses and ask if you are okay with this. You respond with hand signals. You are asked again, and manage to reply: “Yes”, and to thank them for coming. They leave the room and spend one hour recording the 2 witness testimonies.

Due to orthostatic intolerance You were only able to complete half of your nutritional needs before the 3:00 PM deadline. Although you suffer from hypoglycaemia, you have had to go without food for more than 2 hours beyond your safe limit, until the whole process of evidence-gathering is completed and the official has left.

OUTCOME:

At 1:15 PM on a Saturday, in 2017, three weeks later, you receive the verdict by post.
You are exonerated.
Your innocence is pronounced for an “ongoing period” (10 years).
However, you are obviously thought of as a potential recidivist as your name is placed on some kind of offenders’ register, whereby your case can be reviewed at any time, “should your circumstances change”.
Even so, you/I’m nothing less than gleeful and highly relieved.

At 4:15 PM, the room starts to tilt and to swirl, violently.
I experience an acute onset of severe vertigo, accompanied by heat surges, icy cold skin, and bouts of diarrhoea & vomiting (of some blood), after which I pass out whilst still propped against my pillows. I open my eyes after an hour and pass out again for a further half hour.

Today, January 2018 :
I am still in PEM/PENE (post-exertional neuroimmune exhaustion).
I don’t have relapses and remissions, just deteriorations from which I do not recover.

Oh, and you’re probably wondering – what was my supposed ‘crime’?
In November 1979, I became seriously ill.
In the late 1970s, and onwards, this was not considered to be an offence by the general population, nor the UK government.
By 1991, however, there began a never-ending series of denials of my condition, scrutiny and accountability, reviews, appeals and tribunals, all of which I have won, and my benefits and rights have been reinstated every time.

And what triggered this latest, farcical onslaught of harassment?
I was “invited by the DWP (Department of Work and Pensions) to transfer my ‘lifetime’ award of DLA (Disability Living Allowance) to PIP (Personal Independence Payment).”

The treatment that I have been subjected to has been that which may be meted out to a criminal offender.
The harassment of a person suffering from severe, chronic and deteriorating conditions has been brutal, and I would hope that, within the criminal justice system, there are protections in place against such ill-treatment of accused persons.

And… what… an… enormous… waste… of… public… funds…!
The cost to my health of this, and the past 29 years of persecutions, however, has been catastrophic.
This experience will not be easily forgotten.
And, by me and my body, not forgiven.

A criminal offence did, in fact take place:
A disability hate crime.
Prolonged institutional harassment and discrimination
by dint of a person’s disabilities and illnesses.

Ignorantia juris non excusat
Ignorance of my condition is no defence either.

PHYSICAL LOSSES/ DETERIORATIONS SINCE PIP PROCESS:

Barely able to be upright long enough to eat
Can’t move in the bed for the repositioning of pressure care fleeces
Can’t ‘dip’ head forward for placement of headsupport pillow
Extreme upperbody pain
Can’t reach far enough for toilet items
Can’t look down without disabling pain in the eyes
Motion sickness and nausea
Overwhelming brain-fog
Episodes of weeping
Anxiety
Today: still a WARRIOR.

Definitions:

Persecution pəːsɪˈkjuːʃn
Noun:
persecution; plural noun: persecutions
hostility and ill-treatment, especially because of race or political or religious beliefs; oppression.
synonyms: oppression, victimization, maltreatment, ill-treatment, mistreatment, abuse, ill usage, discrimination, tyranny, tyrannization, punishment, torment, torture; pogrom;
informal witch hunt;
informal red-baiting
harassment, hounding, harrying, badgering, teasing, bullying, molestation

costly ˈkɒs(t)li
adjective
costing a lot; expensive.
“major problems requiring costly repairs”
synonyms: expensive, dear, high-cost, high-priced, highly priced, big-budget, overpriced, exorbitant, extortionate, immoderate, extravagant; causing suffering, loss, or disadvantage.
“the government’s biggest and most costly mistake”
synonyms: catastrophic, ruinous, disastrous, calamitous, cataclysmic, devastating, crippling, crushing, fatal, lethal, damaging, harmful, injurious, deleterious, woeful, grievous, lamentable, dire, awful, terrible, unfortunate; literary: direful