Saturday, December 8, 2012

A moving call for justice follows from Stonebird

A moving call for justice follows from the 'Stonebird - The lived
experience of Severe ME' website:


By Linda Crowhurst, 7 December 2012.

When is the neglect, abuse denial negation and downplaying of ME by
wrongful psychiatric involvement and interpretation going to stop?

How many more people have to die?

How many more people who are tormented and physically suffering , in
agony for years, to decades, will have to endure the misdiagnosis,
misinterpretation by doctors and others and the misrepresentation in the
NHS and the media ?

When will sense, honesty, integrity, genuine concern ,compassion and
scientific research with proper, specific ME criteria, win through?

It is devastating to have an incurable disease, but to have one that is
disregarded and negated, knowing you are left on the edge of survival
and society because a group of powerful people representing vested
interests chose to spread confusion and untruth about this serious
physical disease , chose to complicate the illness and bury it in a sea
of generalised fatigue conditions is not only shocking and unfathomable
to the sufferer, it is way beyond unacceptable.

Why is this continuing? Who has the integrity to speak the truth and
stop sitting on the fence? Who has the integrity to challenge the lies
about ME?

Who is willing to acknowledge the abuse for the past 2 decades that we
with a genuine neurological disease have had to put up with?

Very few it seems.

I want to get well. I want to get better. I want to know what is the
physical cause at the centre of my disease. I want proper medical
investigation. I want the tests that everyone else is entitled to on the
NHS, except if you have the label ME. I want this senseless negation and
waste of lives to stop.

The day I was labelled with ME, respect and medical equality went out
the window. The hope of finding our what has gone wrong in my body
disappeared from view that day and has never returned.

Twenty years on there are very few practitioners able to diagnose,
willing to seek, able to understand. Most are compromised or don't
believe in it or don't believe its as bad as it is or believe its all or
mostly in the mind or sign up to the misrepresentation and focus on
generalised fatigue, ignoring the most serious neurological symptoms

How wicked and wrong and misplaced is that? How cruel ? The most
severest, the most damaged and tormented are left vulnerable frail and
unsafe in a system that is failing them on every level. The medical
system is unable to offer what is needed.

That is a frightening place to be when you don't even know if someone
will understand your physical dysfunction or accept it or take it in to
account when they recommend treatment, anaesthesia, advise.

When you don't know if they even believe you are severely physically
ill, when their intervention can harm you, worsen your symptoms, harm
your body, leave you devastated and traumatised for months and years

When you have to trust people to represent you, when they have no real
clue about your physical nightmare reality.

When even if someone says they understand ME, yet still they are
misinterpreting it.

When the focus is on fatigue and all the complex multi system
dysfunction is ignored or pigeon holed into a pet theory to suit them
rather than look at the reality and impact,when risk assessment is not
done because the illness is not understood or acknowledged properly.

When are we going to be treated with equality ?

When are we going to get consultants who know about the neurological
disease ME and who can actually make recommendations that help not
damage us?

When will research actually be done on the correct group of people who
fit in to the ICC criteria for ME ?

Watered down research populations mean watered down results, waste of
money, lack of helpful findings, further confusion over who the research
is actually for.

When will we feel safe to have treatment because it will be appropriate,
relevant, address the disease process,be suitable and effective, not
risk our lives and our health, not based on guess work, based on no
proper medical testing; fanciful risk taking ?

I don't want to be a guinea pig for people's pet theories anymore. I
want a proper medical service and respect for my disease. I want medical
support and people who know what they are doing , in my life. I don't
want to be frightened by the severity of my illness, left to get on with
it and try and figure it out because the alternative of involving people
is to risk abuse and further harm.

I simply do not want to hear that any more people have died or killed
themselves, because of the stark, physical ,tortuous reality of having ME.

What more does it take to get heard and honoured?

When will there be a public inquiry?

Where is the public outcry?

Stunningly silent. Pitifully small.

Linda Crowhurst Dec 7 2012

PLEASE write to UK Parliamentarians to call for such an urgently-needed
inquiry into all matters pertaining to UK ME and CFS policy. A polite
letter to the House of Commons Health Select Committee Chairman and your
own MP will suffice but better still to write to ALL members of the
committee if you can: and keep writing until they can ignore us no more.
For further information and helpful materials for writing to Parliament
do follow the links at the top of the webpage at:

Thank you for your time.

Anglia ME Action, 8 December 2012.
[email protected]

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