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The Skills of an ME Aware Carer : in a nutshell



Ability to listen to instruction and follow it accurately.

An understanding of how to be with someone with profound Light, Touch, Movement, Noise
& Chemical Sensitivity without triggering a reaction.

Ability to flow gently, quietly and gracefully with the person’s energy, so as not to 
waste it.

Skillful  contact appropriate to the person’s
hypersensitivities.

Honest self reflection, awareness and understanding.

Skilful  timing, knowing when and when not to act.


For much more information please see : Severe ME, Notes for Carers
http://stonebird.co.uk/Notes/index.html
Lost Services ,  Lost Lives
Stonebird response to the AHRQ Addendum.

It is a welcome change, to see common sense finally prevailing in the U.S. Agency for Healthcare Research and Quality (AHRQ)’s ground breaking addendum to its 2014 ME/CFS evidence, downgrading the effectiveness of cognitive behavioural therapy (CBT) and graded exercise therapy (GET) in the treatment of ME, as well as highlighting the inappropriateness of the Oxford Criteria to identify patients safely or at all.

It is also hugely encouraging to hear that the Information Commissioner has just ordered that the PACE Trail data be released.

These two game changers must be viewed in the context of what has been happening to people with Myalgic Encephalomyelitis for the last 30 years, who have been excluded from proper medical and clinical input, appropriate to the seriousness of their physiological symptoms.

The term ME has been so misused for so long now, that there is little clarity about who has what illness.

The misinterpretation, the lack of clinical respect and knowledge, the focus on fatigue, the compromises, the misdirection, the mistreatment and misinformation has negated the relatively small group of people with Myalgic Encephalomyelitis, who remain hidden under a wide CFS umbrella, is a travesty.

It is a direct result of the denial, negation and downplaying of ME as a neurological disease, by psychiatry, for decades using the Oxford criteria, to misdirect and focus attention on general and chronic fatigue.

The list of those dying in horrendous circumstances from the disease directly and indirectly through suicide, due to the hopelessness of their situation, the unbelievable torment of their suffering and the denial of basic health respect, grows shockingly long.

The UK psychosocial fatigue clinics set up for Chronic Fatigue, passing as clinics for ME, ineffectively and inappropriately offering management techniques such as CBT and GET, promoted in large by the PACE trial, continues to fail the ME community.

A chronic lack of understanding promoted by research using poor criteria  that ignores the most severely affected plus the complete confusion over diagnosis and various different names used, has made it very unsafe for people with ME trying to navigate health care systems around the world.

The prevailing psychosocial paradigm is almost certain to cause harm to people with ME. 

 A generalised fatigue focus, that ignores severe and serious symptoms such as paralysis, muscle tremor, gut issues, gastroparesis, intense indescribable whole body pain, hyperacusis, MCS and photophobia, to mention only some, leaves those suffering from them, without clinical input, recognition or understanding or any means of moving forward toward hopeful treatment.

This is psychiatry’s legacy: lost generations of people, suffering intensely, hidden, off the map in terms of of clinical input and appropriate health care, ignored, misrepresented and left without help or hope.

A hugely influential fatigue lobby that commands enormous power and influence still continues to do great harm, resulting in:

  • lost services and lost lives
  • confused research, not researching ME specifically yet purporting to, by the use of confused or wide criteria and different name labels
  • the countless numbers of housebound and bed bound people, living in a limbo land of agony
  • the chronic lack of understanding of the physical illness
  • the proscribing in the UK of tests that might help identify health issues
  • the lost VP1 test to identify Enterovirus involvement


How many more people have to suffer and die from this disease?

How many more people who are tormented and physically suffering, left in agony for years, spilling into decades, will have to endure the ongoing misdiagnosis, misinterpretation by doctors, the lack of appropriate care and understanding or investigation and the misrepresentation of ME in health service provision ?

When will sense, integrity, genuine concern, compassion, win through? Perhaps it is just beginning?

When will scientific research with proper, specific ME criteria, for the actual disease, be the standard?

There is an uplifting sense and a hope that, at last, after decades of struggle, we are entering the end game. However, we still see little hope for the future, all the time that fatigue remains the primary focus, whether physical or psychological and the severely affected remain side- lined, ignored, isolated because of the nature of their illness and the difficulties they have in engaging with people and services.

Even if psychiatric involvement is seriously undermined and recognised as inappropriate and, as is necessary, deposed from its seat of power and control, the damage has already been done.

Far too many compromises have been made; the original focus on Myalgic Encephalomyelitis as a neurological disease initiated by an enterovirus has almost been lost in history. 

We fear that a biomedical fatigue focus will still neglect the most severely ill and the real illness, ME, itself, unless a new ME pathway is set up, based on the work of the great pioneers, Ramsay, Richardson, Dowsett, all sadly no longer with us.

The separation of ME from CFS is a battle still to be won. This will be accomplished through the universal acceptance of a proper clinical definition, such as the ICC criteria, not compromising with the outdated, middle of the road, Canadian Criteria. 

A proper biomedical treatment pathway with appropriate clinical input for the homebound  has to  be created, based on in-depth knowledge and comprehension of the complex health issues people with Myalgic encephalomyelitis experience together with an understanding of how to provide a safe service that accommodates the massive difficulties they experience in face to face interaction and investigation.

The AHRQ Addendum is a profoundly important development, for most important of all is the recognition, at last, of the harm and the danger to health of misdiagnosis and wrong interventions.

 A new biomedical care pathway is essential for all, but where are the clinicians to fill the gap? Are they there?

Greg & Linda Crowhurst
Aug 2016

Ref :

AHRQ (2014/2016) Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome : https://effectivehealthcare.ahrq.gov/ehc/products/586/2004/chronic-fatigue-report-160728.pdf

ME Association (2016) Tribunal orders release of PACE Trial data (courtesy of Valerie Eliot Smith) | 16 August 2016 http://www.meassociation.org.uk/2016/08/tribunal-orders-release-of-pace-trial-data-courtesy-of-valerie-eliot-smith-16-august-2016/


Lonely does not really cover the experience.

Having Severe ME must be one of the
loneliest experiences on Earth

You are lonely from the world

Lonely from society

Lonely from friends who you cannot see

Lonely from family who you cannot be with

Lonely from the person in the room with you

because they are still out of reach to you

Lonely from yourself

Your body will not do as it is asked

You cannot find a single thought

You have lost your memory so even the daily events are forgotten

Trapped away

People forget what you were like

Or expect you still to be the same

They cannot begin to imagine your reality

The fine detail is hard to comprehend

Few try

Others utterly fail

Lonely does not really cover the experience.

It is like living on another planet

So far away from normal as you could ever imagine and more

A planet without colour

Without enough air

Without enough water

Without form

Without people

A splendid isolation in an alien environment

Where the rules you learned to live by no longer apply

Where often the opposite of expectation is true

Where what you say is simply ignored or overruled

Where basic equality and respect no longer comply

Where there is no hope

Where there is no ackowledgment

Where there is no support

Where there is no real recognition

Where there is an endless battle to get basic needs met

Where you cease to exist or count as valid

This is your reality from the moment of diagnosis

You are treated as if you have a non disease

You are treated as if there is no actual physical reason for your illness

You are treated as a malingerer, a ne'er do well, a useless burden, lazy and unwilling to change

Covertly if not overtly

You disappear from view

And then you cease to be visible

And then you are a pariah

A nuisance

A stranger

You are crushed by everyone else's lives

You cease to have your own meaning and being

You wait in a tortured limbo land

For a treatment or a cure

For help and confirmation

That never arrives

Whilst everyone else goes about their daily lives

At best paying lip service to your existence

Or simply negating you

Not willing to take account of your anomalies

Too odd, too complex, too inconvenient, too difficult, too strange to encounter and adapt to

And then the separation is final and complete.

Lonely indeed

But so much worse

And so so empty

Gone, let's face it

And never to return

Despite your best hope.


Linda Crowhurst

We Remember : a reflection for Severe ME Day



We remember them with kindness for it is important to honour the dead

We remember them with tenderness for we cared beyond imagining

We remember them with trepidation for we have to face our losses

We remember them with boldness for it takes courage remembering the pain

We remember them with sadness that they are no longer here with us

We remember them with frustration that they were not helped

We remember them with anger that they are gone

For we remember

All the hurt

All the denial

All the extremity of pain

All the neglect

All the harm

All the harrowing moments

All the suffering

All the grief

And we weep with gratitude

For their precious lives

For their tremendous personal strength

For their utmost conviction

For their forthrightness in speaking out

For their passion in life

For their compassion to others

In a hostile, empty world.

We remember and give thanks

For who they were

And who they will always be

In our hearts.

 

Linda Crowhurst

Severe ME Day 2016

Stonebird's contribution to Severe ME Understanding and Remembrance Day Day 2016, with love !

http://stonebird.co.uk/SevMEDay/index.html

Severe ME : Aware Care

I am delighted to announce a brand new Stonebird guide : "Severe ME : Aware Care."

Download here :

http://stonebird.co.uk/buzz/index.html


With love.

ME : we know better

ME they say, "Don't worry, you'll get better in time....."
 
But I know better

No better, after decades of indescribable suffering.

ME, they say," It's fatigue."

But I know better

Bed bound and house bound for years on end, neurological symptoms ignored.

ME, they say," Change your thoughts and you'll feel better."

But I know better,

I did that decades ago and am still profoundly disabled and ill.

ME, they say," We will get your pain and sleep under control


But I know better

My pain and sleep have never been controlled for over two decades.

ME, they say," Just stay in your energy envelope."


But I know better

I simply cannot find it.

ME, they say, " No paralysis here,"

But I know better

Paralysed daily for years on end.

ME, they say," We know how to help you,"


But I know better

They didn't help instead they harmed.

ME, they say, "Don't worry, it won't kill you,"

But I know better

So many friends and other people have died tormented or devastatingly killed themselves, the suffering too great to bear.

ME, I say

When will they accept that we know better

Because we live with it, dangerously having to rely on people who frankly don't know enough about it.
Linda Crowhurst