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Short-listed for Nurse of the Year 2015

Myalgic Encephalomyelitis  is a secret hidden Neurological  illness that is poorly diagnosed and misrepresented as fatigue. The Chief Medical Officer confirmed over  twelve years ago that  ME  should be classed as a chronic condition with long term effects on health, alongside other illnesses such as multiple sclerosis and motor neurone disease and that there is serious medical neglect of the most severe patients. (http://www.erythos.com/gibsonenquiry/Docs/CMOreport.pdf)

Today research into Severe ME  is still almost non-existent, the  illness has been so frequently misinterpreted and understated, that the standard knowledge and provision that should be there just isn't.

How do you offer care to someone in so much physical pain, that even the tip of their nose throbs in agony, who cannot bear light, noise, sound, touch, who is so profoundly hypersensitive that  every move you make can be a torment, threatening to push them into even more extreme depths of illness ?  

Twenty one years of experience, of caring full-time, day and night,  for my wife , who has Very Severe ME, while actively reaching out to others, through my videos, my website Stonebird, the articles and books I have published, my ongoing advocacy and charity work have gone into the  drafting of an innovative nursing strategy detailing how to care for patients with Severe/Very Severe ME, based on a moment by moment approach.

For over two decades I have been  reaching out to people on the edge of service provision and healthcare and society, speaking out, pushing boundaries, innovating, raising awareness of the fundamental truth of ME as opposed to Chronic Fatigue, trying to protect and preserve the biomedical integrity of the illness and the needs of  patients. 

As a fiercely proud Nurse, I can claim to have been true to Florence Nightingale's instruction to herald the way to a “new world, than stand idly on the shore.” (Crowhurst 2012, Carers Week: unpaid, but as professional as they come, British Journal of Nursing , Vol. 21, No. 11 , pp 642–642). 

The Pain Consumes You

When I am in the chaos of unutterable indescribable agony I cannot necessarily feel God. 
The power of the physical experience is huge, vast and all encompassing. I cannot bear the moment I am in. There is no other moment than this one and it seems to spread out to all eternity in an eternal moment of excruciating torture.
All focus must be on coping, on bearing the unbearable, on remaining, on the pain itself, for there is no place that is not pain. All focus must be on coping, on bearing the unbearable, on remaining, on the pain itself, for there is no place that is not pain.
There is no place that is not agony , there is no place that is not on fire with the violence of hurt, within the physicality of the body. The pain screams non existence at you. The pain will consume you. It is not easy to feel spirit in this place. Your mind is huge , it can cry out, but whether it can hear or receive a reply is unlikely. The pain alone is all consuming. You just want it to stop. You do not know when it will kill you, for surely you cannot remain existing in such intense violation of life. , There is no place that is not on fire with the violence of hurt, within the physicality of the body.
Jesus himself entered into this chaos state of extreme pain and distress when he called out :” Father why have you abandoned me.” This is often misrepresented by theologians as Jesus failing and by non religious as evidence that God was not there and that Jesus was wrong and doubted.
But this cannot be so. For Jesus still called out to God, His Father. He knew He would hear him.
He may have felt abandoned by the sheer wait and extremity of suffering and torture he was experiencing. Believe me, such extreme pain blanks the mind of understanding and reason, the burden of pain is intolerable, inescapable and you do not know where to place your awareness to cope with it.
You do not know what to do, you are robbed of normal consciousness. Oddly though your awareness of yourself somehow expands. Each time I have had to endure unbearable pain or had a near death experience, rather than feeling diminished, my consciousness of me in my mind has been huge and strong.
For my self, I have learned that the only way to endure such unendurable tormenting , beyond imagining, sheer pain, is, strangely enough , to go in to it, not resist it and to become incredibly still. This then is where I have come to find God unexpectedly close and present, even in the darkest place of my mind, where I have somehow dissociated and free floated within the pain. He too is truly there and has saved me. He has not necessarily done anything obvious.
No words have been spoken, though God does speak to me and I have heard Him many times. In these profound places of extreme torment I have not heard His Voice , only sensed Him being with me. But only when I have gone right into the pain and not resisted it when there has been no resistance for the pain to react against.
I don’t really have the words to describe the experience. It is more than torment, more than torture, more than indescribable, more than intolerable, more than unacceptable, more than completely unbearable. It is screamingly hostile and negating.
It is barbaric in its cruelty. It is exquisitely diminishing. It is almost completely incomprehensible in its agony it is so vast, so punishing, so pure, so bleak, so empty of life and full of sensations that is beyond endurance.
It is no wonder that Jesus called out to the Father and asked why had he abandoned him. Such is the nature of that place that all awareness can be blocked except for the pain itself that pierces every cell and every space between cells, every existing fibre of being is caught up in the torturing pain. God, who loves us still and holds us all, is helpless to help us in that place in the sense that He cannot reach us, even though he reaches out to us. He weeps for us.
He weeps with us, yet the physicality of the pain is immense and unquenchable. There is no other feeling here.
It is no wonder that Jesus sweated tears of blood and experienced real fear and longing to not take this path of the cross to death. For He had a choice. But once he had made His choice, he had no choice other than to see it through. His choice was then taken from Him till all that could remain was the choice to Love, which he did with immense Power and Grace.
He held us all. In that dire pace. And He loved us, for that was all He could do. And he lifted us and carried us with Him through death ,which is inevitable for all humanity, unto the fullness of life which is a gift of God. His love pouring out from that nightmare of tortuous pain on the cross carried us all with Him, touched us all, gave us the gift of tenderness, compassion and knowing , that can only come through the violent damaging Horror of the cross in all cruelty and despair.
It is no wonder he may have felt like God had abandoned Him for he not only felt his own pain but must have felt all that of all mankind for all time. To imagine the weight of his burden of pain is impossible. Our own pain is too much to bear. No wonder he was rewarded with the precious Gift of life, for he loved us all in that place of non- existence till the whole universe was filled with his love, his spirit, his light and its power returned to him in a miraculous healing power of Love.
Love given out to the very last drop returned in splendour and power and awe and might. The light of life here with us all. The gateway opened for all time for the healing of every soul.

Love always forgives

The other day was impossibly hard. Suffering is not pleasant to witness, my wife's suffering reached a new extremity, verging on despair : where is God ? God seemed absent, despite constant prayer.
My response was far from adequate. Continued unrelenting repeat paralysis on a daily basis is unbearably hard to be a bystander to, especially when it has gone on for decades without adequate recognition or medical intervention.
How do you keep picking yourself up and carry on ?
Of course I understand it is the illness; that the pain and loss , tearing away at every shred of my self esteem, is profound, naked, raw suffering.
Her distress , the pain of screaming multiple hypersensitivity, of a body scalded in agony, is not a personal attack on me, yet nonetheless it assaults me , leaves me feeling hopeless and helpless to make any difference .
The constant knowing that I have not been able to save her from her unimaginable daily agony undermines my self esteem .
Being in the presence of suffering, the child within you, which doesn't know what to do, how to cope, takes over sometimes, withdrawing in dismay, devastated by helplessness , revealing layer upon layer of unheralded hurt: it is a horrible place to be.
But how can anyone know what to do, every moment of every day?
How do you carry on, facing yet another pain- filled paralysed day?
The answer is grace, the power of love, lifting me up, renewing, inspiring, forgiving, learning, enabling me to carry on, on this long journey into suffering. In all my muddled ways, I do not despair. That is a miraculous joy.
For this I have learned. However far away from the light you feel, however grim the moment, however lost you feel, love, true love, never abandons you and thus hope must be reborn anew.
And those who truly love, always forgive, for that is the true nature of love.

The IOM needs to think again


I read with great interest Dr  Lucinda Bateman's and Prof Jason's comments on SEID . Unfortunately ME and CFS are not the same,  so the IOM's starting premise is wrong. 

In M.E. you can never go along with a compromise or a wide  fatigue definition. 

The IOM tries to create a disease definition, SEID, out of an impossibly disparate group of poorly defined fatigue conditions,   unfortunately including ME within them.

To its credit the Report acknowledges the ME-International Consensus Criteria , inexplicably, however, it  ignores the volumes of research outlining the Neurological, Autonomic, Neuroendocrine and Immune system malfunctions that constitute M.E. , a disease at least as disabling or more disabling than other chronic diseases such as lupus, multiple sclerosis or rheumatoid arthritis, more extreme than end-stage renal disease and heart disease with a sickness impact equivalent to that of terminally ill cancer and stroke patients.

CFS is a umbrella term, which can never be made into a single disease - and should never be equated with ME as defined by the WHO.  ME is a disease , but the symptoms ,especially the most severe are missing from this Report. It is the most severely affected, we suggest, who will appreciate most how flawed and misrepresentative this document is.  All the time the most ill are neglected ME is far too easily interpreted as a fatigue condition, with the focus on treating fatigue, rather than upon  the extraordinarily serious symptoms people experience.

At once frustratingly progressive, radical yet unfortunately unaware, the IOM Report does not appear to have comprehended the neurological nature of ME and the separate nature of CFS, neither has it recognised the  difference and fullness of symptom in  mild , moderate and severe ME. 

There is a vast difference between the mild and the most severely affected; Severe ME, is so extreme, so outside normal experience,  it is virtually incomprehensible.  The most hidden, most neglected  have not been represented adequately enough, if at all, in our opinion,  in the IOM Report to ensure that  this is a document about ME,  as opposed to a generalised  document on fatigue conditions, which may or may not be a disease.

 For too long ME has been misrepresented as CFS.  The IOM has to acknowledge that SEID does not include Myalgic Encephalomyelitis; if it's intention was to be genuinely about ME, then it needs to think again.

STONEBIRD
Greg Crowhurst

The ME Community is splitting

As others have noticed, the ME Community is splitting between those who have CFS and those who have neurological ME . One group laps it up, the other is outraged.

How many more people will take their own life ?

Our hearts go out to Vanessa Li's family. We understand the physical pain of M.E.;  we know how impossible that pain is to describe. 

Vanessa could not go on any more. Her loss to us all, this brave determined woman, who started the Microbe discovery Project, from her bed, from cushions on the floor, is tremendous. 

 We ask : how many more people will be pushed, by M.E.,  an despised, awful,  , ignored, untreated, disease,  to kill themselves ? Where is the hope ?

Vanessa wants her death to serve. It will.

Shout ! Shout ! Shout ! Shout as never before, it is so urgent now,  for the truth of M.E.

Make sure it is separated from CFS- and SEID !!

Protect the integrity  of M.E. as a distinct neurological disease, separate from other conditions.

Make sure you are not misrepresenting M.E. yourself in your language and actions.

Until the nature of M.E.  is properly understood there will be no hope - people will be harmed and  people will continue to take their own lives.








How can any civilised society accept this ?

The Science Media Centre and the Psychiatric Lobby


Greg Crowhurst

In a brilliant blog post, Utting Wolff reports upon  how "deafening" the silence surrounding the IOM report in the UK media" is .

Whatever your views on the IOM Report : good news perhaps for CFS, maybe not so good for M.E – the issue as Utting Wolf points out, is how little coverage this landmark  Report got - as opposed to the global, front-page headline coverage just about everything the psychiatric lobby puts out, receives.

As Utting Wolf suggests, imagine how different it might have been if the IOM had recycled the “intellectually embarassing” psychiatric line that ME is a "non disease", a somatoform disorder, maintained by abnormal or unhelpful illness beliefs, that the patient can 'recover' by adjusting their dysfunctional beliefs and behaviour, proposed to be the maintaining factors in ME for example unhelpful, anxiety-provoking thoughts and kinesiophobia ('fear of movement'). Maes & Twisk (2010)

Instead the IOM asserts the opposite : “ ME/CFS is a serious, chronic, complex, multisystem disease that often can profoundly limit the health and activities of affected patient”; it is not “ neurasthenia”.

One can only presume the Science Media Centre is not interested .

Irrationally, despite having been shown to be wrong about the Camelford disaster (Wood 2012), Gulf War syndrome, mobile phones, IBS, fibromyalgia - and now CFS, the psychiatric lobby, greatly aided by the Science Media Centre, exercises enormous influence over Government policy and the Media .(Hooper, Marshall and Williams 2007)

According to Martin Walker (2011) the Science Media Centre plus another lobby outfit, Sense About Science, were set up in the early 2000s by former architects of Labour's 1997 victory, to defend the interests of pharmaceutical and corporate science : George Monbiot (2003) comments upon how “One of the strangest aspects of modern politics is the dominance of former left-wingers who have swung to the right.” (I have reported elsewhere on how enthusiastically Labour and the Coalition have embraced the psychiatric biopsychosocial model of illness. Crowhurst 2015)

These organisations which are dominated by topics closer to corporate rather than public interest. are reported upon uncritically by journalists Tatalovic (2014),

The Science Media Centre's (SMC) claim: to provide neutral scientific views to promote better representation of science in the media, and to be independent of he corporate world and the government is being increasingly questioned. Researchers suggest that the journalists who uncritically report on SMC briefings and quotes sent by the centre are being taken for a ride by a lobby organisation . Tatalovic (2014)

Meantime the UK Science Media Centre (SMC) has spawned a number of sister SMCs in other countries, including Australia, New Zealand, Canada, and Japan. A US version the Science Media Center of the United States is under development.(Powerbase).

How can any civilised society accept this ?

The psychiatric myth, perpetuated by the Science Media Centre and others has led to decades of denial, abuse, misrepresentation, misinterpretation, a total lack of medical investigation, testing and hope – especially for the most severely affected. However as Margaret Williams (2015)  points out- and as the IOM Report possibly suggests  : 'The day is surely approaching when it will be conclusively shown that the psychosocial lobby have spent their ME/CFS careers in a “null field”.'


Crowhurst G (2015) Labour, the Coalition and the Biopsychosocial Model http://carersfight.blogspot.co.uk/2015/01/labour-coalition-and-biopsychosocial.html

Hooper M, Marshall E, Williams M (2007) CORPORATE COLLUSION? http://www.meactionuk.org.uk/Corporate_Collusion_2.htm

Maes M Twisk F NM (2010)Chronic fatigue syndrome: Harvey and Wessely's (bio)psychosocial model versus a bio(psychosocial) model based on inflammatory and oxidative and nitrosative stress pathways BMC Med. 2010; 8: 35.http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2901228/

Monbiot G (2003) Invasion of the Entryists http://www.monbiot.com/2003/12/09/invasion-of-the-entryists/


Tatalovic M (2014) UK’s Science Media Centre lambasted for pushing corporate science http://www.scidev.net/global/journalism/feature/uk-s-science-media-centre-lambasted-for-pushing-corporate-science.html

Utting Wolff (2015) Chronically fatigued? The UK media and the recently released IOM report http://uttingwolffspouts.com/


Walker M (2011) Dirty Medicine: The Handbook Slingshot Publications http://www.amazon.co.uk/Dirty-Medicine-Handbook-Martin-Walker/dp/0956409318

Williams M (2015) Tackling fears about exercise is important for ME treatment, analysis indicates BMJ 2015;350:h227  http://www.bmj.com/content/350/bmj.h227/rr-21



Wood J (2012) The Camelford poisonings – not the 'sorry' that victims were looking for http://www.theguardian.com/commentisfree/2012/mar/14/camelford-poisonings-cornwall-inquest-water

Beyond Human Endurance

Linda collapsed last night, her quiet sobbing, the immensity of pain,not able to carry on. This is a place beyond human endurance.

What makes a good visitor ?

It can be extremely difficult and challenging to reach out to people with Severe ME whose reality is virtually unimaginable.

The person is likely to experience complex cognitive dysfunction, blocking every level of communication, making it extremely hard for them to explain , articulate and identify, from the inside, the profound level of suffering they endure : how unimaginably ill they are in every moment and how massively at risk they are from being harmed through unawareness or ignorance.

The effort of speaking, if the person is able to speak, can be too much possibly lead to a post-exertional crisis.

The pain and acute physical discomfort they suffer, makes it difficult for them to concentrate and deal with complex interactions with other people, especially as the interaction itself will most likely increase their pain even more.

It is essential that anyone trying to communicate with a person with very severe ME understands the way the person communicates, what they can tolerate and how little energy they have and not ignore or forget the persons reality.

What makes a good visitor ?

Someone who :

  • Is sound, light, colour, chemical/ perfume aware.
  • Understand the physical limitations placed upon the person by their illness.
  • Only comes at agreed times.
  • Is willing to stop talking, wait or leave as necessary.
  • Will only brings gifts that are suitable taking into account complex hypersensitivities.
  • Appreciates carer stresses and needs.
  • Does not expect to be waited on.
  • Does not make unnecessary demands .
  • Understands or is willing to learn how to best communicate.
  • Does not misinterpret or misjudge the person.



(This is an extract from my forthcoming book : "Notes for Carers".)

A tragic mishmash of ideas.

A response to Beyond Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome Redefining an Illness Committee on Diagnostic Criteria for ME/CFS
February 10th, 2015

Stonebird
Greg Crowhurst

This Report, which has met with great resistance from patients and clinicians, may or may not be well intentioned, but it is deeply flawed. It tries to create a disease definition, SEID, out of an impossibly disparate group of poorly defined fatigue conditions, while failing to recognise the neurological disease Myalgic Encephalomyelitis, especially the most severe symptoms, at the same time insisting that ME and CFS are the same – this is just incorrect.

It would be good news for people with ME if there were recommendation for a separate Myalagic Encephalomyelitis pathway , one with medical clarity and integrity at the centre, but that is not the case.

SEID is a tragic mishmash of ideas, fundamentally fatigue focused- it is likely to play squarely into the hands of clinicians who treat fatigue but, like this Report, do not take the underlying causes into account.

The IOM assertion that “ ME/CFS is a serious, chronic, complex, multisystem disease that often can profoundly limit the health and activities of affected patients” , that it is not “ neurasthenia” is radical, within the context of ME politics – however it too late – and it is not about M.E.

The so-called "psychiatric lobby" have for many years perpetuated the untruth that ME is a "non disease", a somatoform disorder, maintained by abnormal or unhelpful illness beliefs, condemning patients to decades of neglect, abuse, misunderstanding and mistreatment.

Up till now the “morally indefensible (Weir 2015)” orthodoxy, that has passed for medical consensus is that CFS is a behavioural disorder, due to maladapative thinking , hence the millions of pounds wasted on the PACE Trial.

In that respect, the IOM Report has the potential to be game changer; patients hope that clinicians might be more respectful. The relief of a disease, rather than a syndrome status is palpable.

Why has it taken so long though, for a disease that according to the IOM costs the USA $17 to $24 billion and affects between 836,000 and 2.5 million Americans to be recognised ?

Why, as the IOM observes , has “remarkably little research funding has been made available to study the etiology, pathophysiology, and effective treatment of this disease, especially given the number of people afflicted”. If that is not a scandal, then what is ?

Why has so much money been squandered on psychiatric therapy, that time and again has been shown to make patients much worse ? Unspeakable harm has been done, my own wife , who has Very Severe M.E. has suffered for over two decades with no treatment, no investigation, no hope of a cure. Many have died. Countless lives lie in ruins, sacrificed on the altar of corporate interest.(Hooper et al 2007)

The problem with the IOM report is twofold :

1.Its starting point is back - to - front . It is based on symptoms, rather than causes. To its credit the IOM Report acknowledges the ME-International Consensus Criteria , inexplicably, however, it simply ignores the volumes of research outlining the Neurological, Autonomic, Neuroendocrine and Immune system malfunctions that constitute M.E. , a disease at least as disabling or more disabling than other chronic diseases such as lupus, multiple sclerosis or rheumatoid arthritis, more extreme than end-stage renal disease and heart disease with a sickness impact equivalent to that of terminally ill cancer and stroke patients. This is its first fatal flaw.

Without acknowledging the neurological nature of ME , it allows a wide interpretation which will lead, inevitably to wrong treatment.

2.It is far too simplistic. Whatever the IOM Report is about, it is not Myalgic Encephalomyelitis. Its second fatal flaw is to claim that M.E. and CFS “denote conditions with similar symptoms”. As we have said many times CFS and ME are not the same; there is no relation between the CDC and ICC Criteria, which call explicitly for the separation of M.E. and CFS.

CFS is a umbrella term, which can never be made into a single disease. ME is a disease , but the symptoms , plus the most severely affected are missing from this Report.

With numb, painful fingers, my wife scrawled a picture last night . It is the coffin of M.E. being buried under a headstone called SEID . By claiming to talk about ME the IOM have effectively done what the psychiatric lobby have been trying to do for years, bury ME under fatigue.

If SEID takes hold, it will be equated with ME and ME will become lost completely, mismanaged, mistreated, as it is currently - not even paid lip service to potentially ! There is such a vast difference between the person house and bed bound and someone who is fatigued.

ME is so much more than PEM !!

At once progressive, radical yet outrageously misinformed, the IOM Report has not comprehended the nature of ME and the separate nature of CFS. If only ME and CFS were equivalent , if only they had defined the full nature of the disease, in the first place, back in the mid-1980's, if only the full symptoms and experience of ME had been respected in this Report.

Sadly it will only complicate life further for the most ill.

References :

Hooper M, Marshall E, Williams M (2007) CORPORATE COLLUSION?http://www.meactionuk.org.uk/Corporate_Collusion_2.htm

Weir W (2015) Re: Tackling fears about exercise is important for ME treatment, analysis indicates. http://www.bmj.com/content/350/bmj.h227/rr-13



Don't Criticize What You Don't Understand : One man's experience of the NHS Chronic Fatigue Service

A maelstrom of emotions floods my mind. Anger, disappointment, yet betrayal leaves the sharpest
tang. Hanging up, I immediately replay the conversation:

So what should all these negative blood tests tell you?”
“That the correct tests don’t exist yet?”
“Or, that you do not have a physical problem”
“We will accept you back when you are mentally ready to begin treatment.”

M.E sufferers are familiar with this attitude. It usually manifests in the more alternative treatments our desperation has led us to. A lack of yogic control over the autonomic nervous system dismissed as being not “ready to heal”, bad karma. The bottom-line is clear – we are to blame for remaining sick.

This was different – this was the NHS Chronic Fatigue Service. For three months two nurses sat in my home scattering endless pie charts and completing countless activity logs. They reassured me they believed M.E/CFS was definitely a real illness, but until a cure was available this was the most appropriate course of action.

Of course the warning signs had been there. The Hospital is an odd juxtaposition of dilapidated psychiatric ward and painfully inadequate attempts to modernise the areas patients initially encounter. Wheelchair access was poor, the fatigue service located on the first floor at least 1 km from the car park. Waiting rooms were shared with the gender reidentification and eating disorder service.

An immunologist, claiming to have a special interest in CFS/M.E. had referred me. He was very reluctant to carry out blood tests assuring me they would all be normal. Since my visit they have dispensed with this token nod to actual medicine.

Questionnaires were weighted to fatigue and mental health with NO mention of any other symptoms. The room was stark, my interrogators positioning themselves against a bright window. Aware of my limited energy, the session lasted 2.5 hours. I was punch-drunk by the end. There was much talk of proven evidence based treatment and holistic viewpoints - CBT/GET/Pacing dressed up in tactile New Age terms.

Four years later it would appear my recalcitrance has returned to haunt me. Following a four month wait for a dietician appointment my local surgery informed me that the CFS service stated that as I have “rejected their intervention” I was no longer eligible for treatment. My referral had been made to a dietician in a different Health Authority yet somehow had ended up with the CFS service – how?

People ask me why we get enraged when the media publishes blatant propaganda about our illness.

The reason of course is the pitiful money spent on research is directed at a Groundhog Day kaleidoscope of psychiatric spin. Despite the government listing M.E as a neurological illness the entire culture of treatment is saturated by psychiatry. And not even the more enlightened modern approach to mental health. M.E patients seem to endure a Victorian disdain for their suffering.


Like the Dalai Lama, the majority of patients have pursued years of passive resistance, longing for the paradigm shift a biomarker will deliver. 

Who can blame us? Many cannot lift their heads from the pillow to protest. Healthcare professionals are the gatekeepers to state benefits – we must comply. But as an old punk snarled “anger is an energy.” It is time to get angry, even if it is just challenging the small prejudices we all face on a day to day basis. The tide is turning – we and the psychiatrists can feel it – they are scared, their desperate tactics prove it; soon their gravy train of psycho babble will be smashed by the force of cold hard science. A change is going to come.

What makes a good nurse ?

I am fiercely proud to be a nurse, with 31 years experience- 21 spent caring day and night for someone with Very Severe M.E. This is an extract from my forthcoming book : "Severe M.E : Notes for Carers."

As nurses we have a duty to speak up when we see wrong practice,which unfortunately abounds in M.E., because of the ongoing confusion with chronic fatigue and a lack of awareness of the difference.

In all my experience, a nurse who cares for someone with M.E. needs to be: 

  • A person of integrity
  • Wise
  • Honest
  • One who lives by the nursing code.
  • One who listens to the patient – not to do so, is to potentially cause much harm.
  • One who has the courage to speak up against misinformation, misinterpretation and mistreatment.
  • A person with great self-awareness.
  • One who knows that Myalgic Encephalomyelitis (M.E.) is not a mental health disorder.
  • One who knows that M.E. is a serious neurological disease with multi- system dysfunction.
  • One who knows that exercise can harm patients with M.E.
  • One who is up to date on information and current medical research into M.E.
  • One who knows that the symptoms of M.E. are serious, that between 10% and 25% of patients are severely affected – housebound, bed-bound or immobile – and severely overlooked.
  • One who is very aware that the specific hypersensitivities in M.E. such as chemical, light, noise, drug,touch and food sensitivities must not be ignored; to do so risks deterioration.
  • Flexible
  • Patient
  • Understanding
  • Gentle
  • Sensitive
  • One who does not wear perfumed products.
  • Acutely aware of the dangers of PEM (Post-Exertional -Malaise)
  • Acutely aware that the slightest wrong movement, sound or action can be devastating.

 New ways of enabling nurses to assist patients with ME urgently need developing .

We are only here briefly (for Vanessa Li)

We are only here briefly
Our life burns with us
Even if it is smaller, dissipated, flickering,
with ME
We must do what we must
To shine
To speak
To stand up
For ourselves
For there is no effective level
Of representation
Out there
Where it counts.
ME symptoms go unrecognised
Untreated,
Mislabelled
Undiagnosed
Misrepresented
Mistreated.
Confusion
And complication reigns
Where a straightforward,
Honest
Medical pathway should exist.
Meanwhile
Precious friends and acquaintances
Die
From lack of knowledge,
Lack of Respect,
Physical neglect,
If not outright harm
Done to them.
When will it be enough
For the Medical Establishment
To be ashamed?
For the Government to act
With genuine integrity?
When will our lives be equally treated
To any other acceptable disease?
Deliberately covered up
And negated
By a Fatigue campaign
That spans decades,
When will our voices
Be heard
And real change come?
When will there be hope for every single person
Who has Myalgic Encephalomyelitis?
Each death we hear of
Breaks our hearts
Each loss
Is simply unacceptable
Another beautiful soul
Gone from the world.
The silent loss of their presence
Echoes outrage
Round the world.
Who will hear
And take action for genuine change?
How many tears of sorrow
Must we weep?

Linda Crowhurst