Showing posts from August, 2016

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

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
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 misinterp…

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…

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 !

Severe ME : Aware Care

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

Download here :

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 peop…