Caring for someone with Severe ME

The relationship between you and the person with severe ME, must be be a priority in your life; you may be caring for decades, as there is currently no treatment, no cure and limited validation. This means that you need to understand the illness , what it is and how it affects the person.

This is going to take time; it will not happen overnight. It may take years, even to identify the symptoms and understand their impact. Also, it is going to be painful, as you try and understand the complexity of severe ME and its bizarre nature ; in relation to you as a carer, trying to help the person and the impact it has upon your lives.

The person with severe ME is not living in the same experience of the world as you are; this is so hard to understand and to deal with :

You are most likely going to have to work this out alone.

You are going to enter into some of the aspects of the person's experience; the disbelief, the disappointment, the negativity, the misunderstanding, the misinterpretation, the rejection.

You are going to have to become aware politically of what is going on, in order to survive.

You are going to have to fight your corner and the person's corner, even to get basic needs met.

You will have to become an advocate for yourself and the other person because ME is so poorly understood , often treated as a psychiatric illness rather than a true neurological, multisystem, dysfunctional disease.

a grey stone carving of a pigeon-like birdThe Stone Bird
The person with severe ME is not going to fit into standard procedures and practices, do not expect that it is going to be easy and expect that formal agencies are going to reach out and comprehend.

You really cannot assume that you are going to get the understanding, the acceptance, the medical and social support from family and friends that you would expect and should be entitled to and would get with any other illness.

If you are going to be the main carer for the person with severe ME, you have to make the choice between work and poverty and quality of life and your relationship with the person.

You need to accept the choices you make and look for the benefits you gain in loving and caring for that person.

There is a tendency, on behalf of professionals and well meaning others to be quite divisive and to client-ise patients and carers, rather than offer a holistic approach and understanding of what their need is. Do not give your power away to social workers, nurses, doctors, anybody. You work, live with the person, you do know better and trust has to be earned.

You will become greater than you ever thought possible, because you really do have to reflect upon what is important to you in your life and how to be empowered.

Severe ME : featuring Justice for Karina Hansen

“With unparalleled imagery and quotations the book describes like a surgeon what it is like to live a life as and with someone who is severely stricken with the devastating disease Myalgic Encephalomyelitis.”

Rob Wijbenga

The MOMENT Approach App

“All our experience, over two decades of living with and caring for someone with Very Severe ME, finds expression in the MOMENT Approach.”

Greg & Linda Crowhurst

(COMING SOON) Severe ME : Notes for Carers

Caring for people with at the severe end of the spectrum, can be extremely challenging to get right it requires a quantum leap in understanding.

<"aWanting to be me, not ME
<"a With Hindsight : Things I would say to myself when I first got ill.
Linda Crowhurst
<"aDashed Hopes & Inappropriate Services
<"aPrice of Myalgic Encephalomyeltis.
Stonebird is immensely proud to publish Wendy Boutilier ’ s outstanding account of the physical price, those who suffer from ME pay.
<"aHouse and bedbound does not describe Severe ME.
<"aWhat is the word beyond unbearable ?
<"aThe role of the facilitator
<"aIssues of Noise, Light,Touch,Chemical & Movement Sensitivity in Severe/ Very Severe ME that carers need to be aware of.
a poster saying Severe ME Day, Remember US, Remember ThemA Comet of Destruction by Sarah-Louise "Feather" Jordan
An exquisitely beautiful, haunting account of the lived reality of Severe ME.
a poster saying Living Death Disease by Sally BurchLiving Death Disease by Sally Burch
The best article we have read on Severe ME. Please read and spread widely.
a poster how we need better testing and illness identificationME poster
a poster saying how ME has come to mean anything people it doesME poster
a poster saying it is not easy being a long-term carer for someone with Severe MECarer poster
a poster saying how paralysis can hit in momentParalysis poster
a poster saying how paralysis takes over your whole bodyParalysis poster
a photo of Greg holding LindaThis afternoon....
a poster saying how hard it is to care for someone with Severe ME in the face of medical neglect Journal Extract 1
a poster saying how CFS is a mechanism for neglecting the most severely ill. CFS : a mechanism for wholescale neglect.
a poster saying the medical  profession has comp0letely failed us Failed by the medical profession.
a poster with a picture of Linda The state of unutterable indescribable agony
a poster listing the many symptoms of chemical sensitivity in Severe ME
This is Severe ME : Chemical Sensitivity
a poster listing the many symptoms of movement sensitivity in Severe ME
This is Severe ME : Movement Sensitivity
a poster listing the many symptoms of touch sensitivity in Severe ME
This is Severe ME : Touch Sensitivity
a poster listing the many symptoms of light sensitivity in Severe ME
This is Severe ME : Light Sensitivity
a photo of Linda and the words What can I say that will express this illness inside of me ?
This Illness Inside of Me.
photos of Merryn in a hospital bed
This is Merryn, she is 17 and has Severe ME.
a quote saying :I cannot even articulate my distress
About the neglect
The denial
The mistreatment and the abandonment
.
I cannot begin to convey..
a picture of a man looking out over a bleak landscape
The Poverty of Severe ME
a poster saying A desiderata for Carers
A desiderata for Carers.
a poster How to protect yourself
How to Protect Yourself.
a poster saying risk assessment in Severe ME
Risk Assessment in Severe/Very Severe ME.
a nurse looking at a poster saying 50 reasons why it is difficult to treat someone with Severe ME
55 reasons why it is difficult to treat someone with Severe ME
a black and white photo of Linda with 100 written across it in pink
100 things you cannot do with Very Severe ME
a drawing of a carer comforting a person with severe ME.
An holistic approach to caring for Someone with Severe/Very Severe ME
a poster saying a definition of me with the most severe symptoms is no definition at all.
Stonebird (informal) definition of Severe ME.
For Nurses : an extract from " Severe ME featuring Justice for Karina Hansen"is available for free online.
CBT and GET cannot and should not be used to treat the symptoms of ME
Very Severe M.E.
seeing an invisible illness
is believing.
PLEASE READ
this extraordinary
photographic account.
This is Severe ME :
Kara Jane Spencer.
10 Carer Rules.
10 Carer Rules
a cartoon of a doctor sitting at a desk
The Doctor's Dilemma eBook. Download and help the people of the Philippines.
an advocate, arm outstretched, protecting the person
A Rule for an ME Advocate
a  poster saying mind, body, emotion, spirit
The Moment Approach
How to help someone with Severe ME
a cartoon of a person being crushed by multiple symptoms and injustice.
Unbearable !
a cartoon of a man standing by a bed.
Very Severe ME :
underlying principles of Care
a drawing of someone caring for another in bed.
How to Care, really Care
for someone with Severe ME
a black and white picture of Linda.
Paralysis, a qualitative study
a photo of Linda
We Live in an Impossible World
a sign saying scandal people with severe me are being ignored
Scandal - the ignoring of people with Severe ME.
a poster of Linda lying on the ground surrounded by a list of all the things she cannot do
I cannot
a poster listing the 10 reasons
10 Reasons why you should chose to live with Severe ME
a photo of a surgeon 55 reasons why people with Very Severe ME cannot access health care.
a pastel painting of a lilly DO NO HARM, DO NO BETRAYAL by Diane
A harrowing, must read account of Severe ME and psychiatric misinterpretation.
ME Support LogoME Support feature : Care for Someone with Severe Myalgic Encephalomyelitis
a photo of Linda The Agony of Living with Very Severe ME
a black and white picture of Greg looking out to sea The Agony of Caring for Someone with Very Severe ME
a screenshot of the webpage - a slide show over a union jack The Great UK PACE Trial Scandal
A slideshow.
a black and white sketch of a prison cell with bars on the window I just do not get it !
Why we should not use the term CFS and why we all need to challenge its use and stop being complacent about it.
a diagram showing ME and CF and other illness being separated through an hourglass How to separate ME from CFS
a screenshot of the full screen  slide show This is Severe ME
Stonebird Autumn Art Installation
a screenshot of the webpage - designed to look like an old American drive-in movie theatre The Great American ME Scandal - for Obama
a drawing of an ME Body showing the pain and suffering 25% Group & Stonebird : Do Not Mess with Severe ME
Imagine the gap that exists between the person with Severe ME and you...
a screenshot of the youtube video The Detrimental Effect of Noise in Severe ME
A YouTube Video showing the awful - and lasting suffering caused by noise.
a photo of the suthor, in balck and white Liberating the NHS ? My foot !!
Still conducting my background research into the Government's NHS Consultation on "Choice" , it is instructive to look at the powerful players who are busy Liberating "the NHS budget to hand it over to the corporate sector."
a screenshot of the BJN Magazine website “Unpaid , but as professional as they come.” British Journal of Nursing, by Greg Crowhurst.
a purple poster saying : be aware PIP is coming 25% Group & Stonebird : DWP Personal Independence Payment (PIP) Consultation Response
a painting saying all of me hurts  Who wants to know ?
a poster saying ME is Real  Can anyone really claim not to "believe" in ME ? !
ME is assumed to affect about a quarter of a million people in the UK.
a poster saying Voices from the Shadows , Make it Happen, This is an opportunity for the mE community to be heard. Voices From the Shadows out now on DVD !
This is a film that must change hearts and minds. This film is our best hope to get the truth of myalgic encphalomyelitis , a severe and devastating physical disease, out to the world.
Stonebird: The Lived Experience of Severe Myalgic Encephalomyelitis (ME)

Caring for someone with Severe ME

The relationship between you and the person with severe ME, must be be a priority in your life; you may be caring for decades, as there is currently no treatment, no cure and limited validation. This means that you need to understand the illness , what it is and how it affects the person.

This is going to take time; it will not happen overnight. It may take years, even to identify the symptoms and understand their impact. Also, it is going to be painful, as you try and understand the complexity of severe ME and its bizarre nature ; in relation to you as a carer, trying to help the person and the impact it has upon your lives.

The person with severe ME is not living in the same experience of the world as you are; this is so hard to understand and to deal with :

  1. You are most likely going to have to work this out alone.
  2. You are going to enter into some of the aspects of the person's experience; the disbelief, the disappointment, the negativity, the misunderstanding, the misinterpretation, the rejection.
  3. You are going to have to become aware politically of what is going on, in order to survive.
  4. You are going to have to fight your corner and the person's corner, even to get basic needs met.
  5. You will have to become an advocate for yourself and the other person because ME is so poorly understood , often treated as a psychiatric illness rather than a true neurological, multisystem, dysfunctional disease.
a grey stone carving of a pigeon-like birdThe Stone Bird
The person with severe ME is not going to fit into standard procedures and practices, do not expect that it is going to be easy and expect that formal agencies are going to reach out and comprehend.

You really cannot assume that you are going to get the understanding, the acceptance, the medical and social support from family and friends that you would expect and should be entitled to and would get with any other illness.

If you are going to be the main carer for the person with severe ME, you have to make the choice between work and poverty and quality of life and your relationship with the person.

You need to accept the choices you make and look for the benefits you gain in loving and caring for that person.

There is a tendency, on behalf of professionals and well meaning others to be quite divisive and to client-ise patients and carers, rather than offer a holistic approach and understanding of what their need is. Do not give your power away to social workers, nurses, doctors, anybody. You work, live with the person, you do know better and trust has to be earned.

You will become greater than you ever thought possible, because you really do have to reflect upon what is important to you in your life and how to be empowered.

<"aWanting to be me, not ME
<"a With Hindsight : Things I would say to myself when I first got ill.
Linda Crowhurst
<"aDashed Hopes & Inappropriate Services
<"aPrice of Myalgic Encephalomyeltis.
Stonebird is immensely proud to publish Wendy Boutilier ’ s outstanding account of the physical price, those who suffer from ME pay.
<"aHouse and bedbound does not describe Severe ME.
<"aWhat is the word beyond unbearable ?
<"aThe role of the facilitator
<"aIssues of Noise, Light,Touch,Chemical & Movement Sensitivity in Severe/ Very Severe ME that carers need to be aware of.
a poster saying Severe ME Day, Remember US, Remember ThemA Comet of Destruction by Sarah-Louise "Feather" Jordan
An exquisitely beautiful, haunting account of the lived reality of Severe ME.
a poster saying Living Death Disease by Sally BurchLiving Death Disease by Sally Burch
The best article we have read on Severe ME. Please read and spread widely.
a poster how we need better testing and illness identificationME poster
a poster saying how ME has come to mean anything people it doesME poster
a poster saying it is not easy being a long-term carer for someone with Severe MECarer poster
a poster saying how paralysis can hit in momentParalysis poster
a poster saying how paralysis takes over your whole bodyParalysis poster
a photo of Greg holding LindaThis afternoon....
a poster saying how hard it is to care for someone with Severe ME in the face of medical neglect Journal Extract 1
a poster saying how CFS is a mechanism for neglecting the most severely ill. CFS : a mechanism for wholescale neglect.
a poster saying the medical  profession has comp0letely failed us Failed by the medical profession.
a poster with a picture of Linda The state of unutterable indescribable agony
a poster listing the many symptoms of chemical sensitivity in Severe ME
This is Severe ME : Chemical Sensitivity
a poster listing the many symptoms of movement sensitivity in Severe ME
This is Severe ME : Movement Sensitivity
a poster listing the many symptoms of touch sensitivity in Severe ME
This is Severe ME : Touch Sensitivity
a poster listing the many symptoms of light sensitivity in Severe ME
This is Severe ME : Light Sensitivity
a photo of Linda and the words What can I say that will express this illness inside of me ?
This Illness Inside of Me.
photos of Merryn in a hospital bed
This is Merryn, she is 17 and has Severe ME.
a quote saying :I cannot even articulate my distress
About the neglect
The denial
The mistreatment and the abandonment
.
I cannot begin to convey..
a picture of a man looking out over a bleak landscape
The Poverty of Severe ME
a poster saying A desiderata for Carers
A desiderata for Carers.
a poster How to protect yourself
How to Protect Yourself.
a poster saying risk assessment in Severe ME
Risk Assessment in Severe/Very Severe ME.
a nurse looking at a poster saying 50 reasons why it is difficult to treat someone with Severe ME
55 reasons why it is difficult to treat someone with Severe ME
a black and white photo of Linda with 100 written across it in pink
100 things you cannot do with Very Severe ME
a drawing of a carer comforting a person with severe ME.
An holistic approach to caring for Someone with Severe/Very Severe ME
a poster saying a definition of me with the most severe symptoms is no definition at all.
Stonebird (informal) definition of Severe ME.
For Nurses : an extract from " Severe ME featuring Justice for Karina Hansen"is available for free online.
CBT and GET cannot and should not be used to treat the symptoms of ME
Very Severe M.E.
seeing an invisible illness
is believing.
PLEASE READ
this extraordinary
photographic account.
This is Severe ME :
Kara Jane Spencer.
10 Carer Rules.
10 Carer Rules
a cartoon of a doctor sitting at a desk
The Doctor's Dilemma eBook. Download and help the people of the Philippines.
an advocate, arm outstretched, protecting the person
A Rule for an ME Advocate
a  poster saying mind, body, emotion, spirit
The Moment Approach
How to help someone with Severe ME
a cartoon of a person being crushed by multiple symptoms and injustice.
Unbearable !
a cartoon of a man standing by a bed.
Very Severe ME :
underlying principles of Care
a drawing of someone caring for another in bed.
How to Care, really Care
for someone with Severe ME
a black and white picture of Linda.
Paralysis, a qualitative study
a photo of Linda
We Live in an Impossible World
a sign saying scandal people with severe me are being ignored
Scandal - the ignoring of people with Severe ME.
a poster of Linda lying on the ground surrounded by a list of all the things she cannot do
I cannot
a poster listing the 10 reasons
10 Reasons why you should chose to live with Severe ME
a photo of a surgeon 55 reasons why people with Very Severe ME cannot access health care.
a pastel painting of a lilly DO NO HARM, DO NO BETRAYAL by Diane
A harrowing, must read account of Severe ME and psychiatric misinterpretation.
ME Support LogoME Support feature : Care for Someone with Severe Myalgic Encephalomyelitis
a photo of Linda The Agony of Living with Very Severe ME
a black and white picture of Greg looking out to sea The Agony of Caring for Someone with Very Severe ME
a screenshot of the webpage - a slide show over a union jack The Great UK PACE Trial Scandal
A slideshow.
a black and white sketch of a prison cell with bars on the window I just do not get it !
Why we should not use the term CFS and why we all need to challenge its use and stop being complacent about it.
a diagram showing ME and CF and other illness being separated through an hourglass How to separate ME from CFS
a screenshot of the full screen  slide show This is Severe ME
Stonebird Autumn Art Installation
a screenshot of the webpage - designed to look like an old American drive-in movie theatre The Great American ME Scandal - for Obama
a drawing of an ME Body showing the pain and suffering 25% Group & Stonebird : Do Not Mess with Severe ME
Imagine the gap that exists between the person with Severe ME and you...
a screenshot of the youtube video The Detrimental Effect of Noise in Severe ME
A YouTube Video showing the awful - and lasting suffering caused by noise.
a photo of the suthor, in balck and white Liberating the NHS ? My foot !!
Still conducting my background research into the Government's NHS Consultation on "Choice" , it is instructive to look at the powerful players who are busy Liberating "the NHS budget to hand it over to the corporate sector."
a screenshot of the BJN Magazine website “Unpaid , but as professional as they come.” British Journal of Nursing, by Greg Crowhurst.
a purple poster saying : be aware PIP is coming 25% Group & Stonebird : DWP Personal Independence Payment (PIP) Consultation Response
a painting saying all of me hurts  Who wants to know ?
a poster saying ME is Real  Can anyone really claim not to "believe" in ME ? !
ME is assumed to affect about a quarter of a million people in the UK.
a poster saying Voices from the Shadows , Make it Happen, This is an opportunity for the mE community to be heard. Voices From the Shadows out now on DVD !
This is a film that must change hearts and minds. This film is our best hope to get the truth of myalgic encphalomyelitis , a severe and devastating physical disease, out to the world.