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The Agony & the Isolation

I feel so low
So small
So dark
Yet so huge
So vast
and swollen,
By numbness,
Pushing me outward,
Toward the void
I cannot feel myself
I cannot be myself
I am no longer who I am.
I am stuck to the floor,
to the chair,
My limbs are stuck to each other.
There is just separation.
There is just emptiness.
There is just agony.
There is just nothing.
I am disappearing by degrees
Each time it comes.
It is an intolerable, physical assault
On my being.
I find I can no longer bear even less than I used to bear
Yet more, somehow, even so,
because it keeps adding on
and adding on;
The thousands and thousands of times
Over all the months, the years, the decades.
Continually adding up
Greater and greater still,
Along with the denial
The unhelpfulness
The negation
The neglect
The abandonment
The harm
The ignorance
The cruelty
and the impossibility
of it all.
Yet still I am left struggling
Not really knowing how to bear it,
Not really knowing the best way through it,
Not even knowing if something or someone
Could actually help me
Somewhere, in the world
If only I could find them,
If only I could connect with them,
If only I could make contact
In a way
that did not
make me
Even worse.

We're responsible....

 It was terrifying and jaw dropping to watch this address by Peter White : jaw-dropping because of the way the truth was distorted to fit a rigid, maufactured psychiatric narrative; I have dealt with some of the issues raised here :…/pseudo-science-in-uk-re… .

The chilling part was White's "we're responsible" admission , the throwaway remark at the end, that they "transposed epidemic ME into endemic ME"- I have been trying to make sense of that : "epidemic" describes a disease that's widespread and "endemic" means a disease that is found in a certain place and is ongoing; that is not how I would describe the insideous process.

It would have been much more accurate had White admitted they " expropriated ME and tried to transpose it as CFS." With disasterous results, not least for the PACE Trial investigators.

So many lives ruined, destroyed.

But, here is the irony, White is one of the very few, unlike the CCC and the ICC, who has picked up on paralysis being a defining feature of Ramsay-defined ME. We have devoted a huge ammount of time on Stonebird to studying paralysis, that forgotton, yet critical defining symptom in Severe and Very Severe ME. At the end of the day, Professor White may have done some good.

No More !!

It is hard not to be very angry at all the psychiatric misdirection, that has so dominated ME for themlast three decades, condemning seriously ill people, like my wife, to a life of constant suffering, that few could possibly comprehend, it is so far off the scale, without any investigation, any treatment or any hope of a cure.

How much harm has been done ?

Will anyone ever be held accountable ?

Is there an ME Community anymore ?

Now that it has been so discredited, so comprehensively torn to shreds, it is hard to see how the psychiatric lobby can defend the PACE Trial, or ever be taken seriously again. Their toxic research has been exposed as vacuous, their statistics as zombie science, their work as incomprehensible and amateurish.

You would think nobody would take those psychiatrists seriously again, but tragically we live in a world where it is not truth but spin that counts. Given the vast resources at their disposal, especially their access to the media, expect this to be spun as a tale of well meaning scientists doing their best to help a hostile patient population, never mind the decades of deliberate manipulation, the denial, the turning a blind eye to the overwhelming physical evidence , debunking the psyche's insulting claims that ME is a result of misguided thinking. 

Never mind the horrific devastation, pain and suffering people have had to endure as a result. Never mind the profound influence and huge wealth of the mighty Insurance Industry that so dominates behind the scenes.

Don't expect the CFS Clinics to be closing down anytime soon.

Time and again the psychiatric lobby have shown how they are masters of media manipulation.
However, the writing is on the wall. The thousands of signatures, the backing of academics, the extraordinary back peddling by the Telegraph, the pressure on the Lancet; at last the long awaited and hard fought for breakthrough is happening, on many fronts. You can actually feel the earth shifting.
But the struggle will not be won until we finally separate ME from CFS - that mother of all messes is the cause of all our troubles.

Until then the confusion and mayhem, which has been so carefully sown, will continue to wreck havoc and destruction, denying any hope of proper investigation and cure.

"PWME" means exactly that . Let us demand that the ICC Criteria be adopted across the board. Let us be very clear that you do not get "better" without treating the underlying multi system dysfunction. Let us begin, though, by asking ourselves this one rather pertinent question :
Is there an "ME Community" anymore ?

Stonebird Statement on the PACE Trial Controversy

The issue, regarding the 'PACE' trial, for the ME Community, as always, is about truth and the
integrity of science. Sadly, it is psychiatry that has worked for more than three decades to deny the physical existence of ME, by hiding it in a poorly defined cohort of patients,with a very wide ranging definition of fatigue.

It is psychiatry, that , without a credible shred of evidence, has aggressively sought  to have people with ME, a WHO defined Neurological Disease, classified as mentally ill, victims of misguided thinking or hysteria and misdirected the focus away from the most serious and disabling symptoms, towards a generalised fatigue focus.

It is psychiatry that has forcibly removed patients, against their will from their homes and consigned them to psychiatric institutions, with tragic and even fatal consequences.

It is psychiatry that has encouraged the proscription of tests that might help identify physical illness.

It is, then, imperative, for the ME Community, that the authors of the highly influential PACE Trail explain themselves and are held to account, if, as seems likely, their science is seriously flawed. This should, then, rightly, have major implications for the healthcare of thousands.

Only then will there be any hope that the dreadful 'psychosocial cloud' that has hung over people with ME and dominated UK healthcare policy, with ineffective 'management' regimes, will finally lift and  end the denial of  seriously physically ill patients,  often house and bed bound, undergoing tremendous physical suffering and experiencing complex  multi- system dysfunction, with little to no clinical understanding, investigation, treatment or hope.

Maybe then a new dawn can begin, where the respect, investigation and treatment they so desperately need might become possible and a genuine biomedical integrated response might develop within accessible healthcare systems.

Stonebird references :

The Five Myths that underpin official UK ME policy

The Great UK PACE Trial Scandal

When I am 64 and other false positives : The PACE Trial.

101 Good Reasons :
Why it is wrong to provide CBT and GET to ME Patients.

Announcing Notes for Carers : out on Kindle

What a challenge it has been- converting "Notes for Carers" to the Kindle format- it has taken me weeks; anyway it is done and is available right now in the Kindle Store  !!

The book retains the charm of the print version - although not so many illustrations, in addition it contains three extra, chapters including an extraordinary account of the dreadful impact of cognitive dysfunction in ME, which is so often dismissed and underplayed as "brain fog".

There is also a new chapter on coping.

It is a joy to introduce the Kindle edition of "Notes for Carers" !!!

Thanks again to all who contributed and made this book so special and to everyone for all the incredible support and wonderful affirmation I have received. xx

How do you convey how very ill you are ?

How do you convey how very ill you are,
When words seem to lose their meaning, 
as the illness takes a tighter and tighter grip on you?
First you say, "I am ill."
Then you say, "I am very ill."
Then I am "seriously ill."
Then I am "severely ill."
Then I am "worse."
Then I am "very severely ill."
Then I am "profoundly affected."
You try to explain each symptom,
But how do you convey multi- level pain,
impacting with different sensations?
How do you convey it is somehow more complex, torturing, intense
Than anything you would know?
"Pain," I say. "Burning pain. Throbbing pain. Itching pain. Numb pain."
"Worsening pain."
"Screaming pain."
Then "more deterioration."
Then "worse deterioration."
"Agony, torment, torture, literally."
Then there is the hypersensitivity.
Then there is the brain fog, creating absolutely "zero" in your mind.
The loss
Becomes a "void."
"A vacuum."
"Empty nothing."
But what does that feel like?
What does that look like?
How horrendous does it have to be
For people to "get it",
Then respond with genuine empathy?
Why, instead, am I left in this splendid isolation,
Forced upon me by profound, indescribable
symptom desolation, without relief,
That simply is overlooked, denied, ignored, by most
Leaving me feeling like a pariah and a ghost
In my own life?
Feeling that no one actually recognises,
nor understands,
in the normal world,
the sheer level of suffering,
that continues without letup,
For decades?
Leaving me feeling that there are simply no words,
To describe my reality
Because I ran out of them over twenty years ago.
Yet still, it carries on.

("Severe ME : Notes for Carers" Kindle Edition out soon)