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CRUSHED

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Saint Patrick’s Day is special to me, not just because I am Irish, but because so many remarkable events in my life have occurred on this precious day. Not that it makes a difference. Today like ever other day for the last 26 years, my wife will lie hideously crushed under the weight of her illness, unable, most likely to even bear my presence, let alone celebrate; we would give anything, to celebrate together, for March 17th is the day I arrived back in England from living in South Africa, many years ago. I remember looking down from the plane, wondering who I was going to meet...... Today Linda will struggle and her struggle will be terrible to witness. Maybe I will have a small whiskey later in memory of my grandfather’s birthday, maybe there will be some kind of easier moment ......

Want To Be Free of ME!

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"I want to be free from ME !", my wife's deep, deep cry broke my heart this afternoon. Another day of screaming torture.
With unbearable destruction, ME dominates every single moment of our life together. Uuntreated, unacknowledged, uninvestigated, unheard off, the most ill suffer, like this for ever in silence and abandonment. For decades on end, you fight for change, while those who perpetuate the lie that ME is not to be taken seriously, take no notice, they just keep on getting more powerful. You fight for decades and here you are with no power to make a difference, reliant on Charities to speak up for you, that still, after all this time won't get off the fence. You sometimes wonder, really, what chance is there of making a difference ? Then your heart breaks open, and with unbelievable strength and determination you cry out anyway : no way am I giving up the fight and struggle for truth !

THE ME COMMUNITY MUST MAKE IT VERY CLEAR THAT "CFS/ME" HAS NOTHING TO DO WITH MYALGIC ENCEPHALOMYELITIS

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Stonebird The psychiatric lobby continues to argue that “CFS/ME” is a “functional somatic syndrome” (ie. a behavioural disorder) in which medically unexplained fatigue is perpetuated by inappropriate illness beliefs, pervasive inactivity, membership of a self-help group and being in receipt of disability benefits.
It asserts that there are no physical signs of disease, no pathology causing the patients’ symptoms, and that because patients are merely “hypervigilant” to “normal bodily sensations”, the illness should be managed by behavioural interventions to “reverse” patients’ “misperceptions”.(Hooper 2012) Even though it has been shown, through the failure of the PACE and FINE Trials, how the term “CFS/ME” is an hypothesis that “is scientifically bankrupt “ and absurd. (Tuller 2017), it is still used in the recently published BACME Guideline on Severe "CFS/ME". All those who represent people with ME should be insisting, in the strongest possible terms that : 1. The term &qu…

THE STARK SITUATION

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With Severe ME you are on your own ; finding some way to survive the never-ending onslaught of multiple physical symptoms, moment by outlandish moment, is beyond impossible.
There is virtually no one to turn to for medical help and advice, all that is formally on offer is a psychosocial pathway that denies there is any pathology. You might be lucky and have an aware GP - but they are unlikely to have access to expert help, so the GP is very limited in how they can help. You might be able to pay privately, but that is fraught with risk. This is the stark situation people with Severe ME are in.

BACME WORKING GROUP ON SEVERE CFS/ME

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With no apparent understanding of the dangers and difficulty of what they promote, the BACME working group prescribes ‘incremental pacing and grading of activities to aid rehabilitation.” It sounds reasonable for someone in a stage of recovery after illness who is ready for rehabilitation, but, it must be stressed in the strongest possible terms, is completely unrealistic in Severe ME, where patients : ● Are severely to profoundly physically disabled with an incurable neurological disease.
● Their symptoms and pathology are ignored/denied.
● Have serious system dysfunction that can be made infinitely worse through the wrong approach. From our experience, even the simplest exertion can lead to massive deterioration and Post Exertional Neuro-Immune Exhaustion (PENE). For nothing in Very Severe ME is reliable, rigidly increasable or predictable. The severity of deterioration is not predictable in advance and can be unimaginably horrendous. The recovery time from it can be weeks, months, y…

HOW MUCH LONGER WILL WE BE OUTCASTS?

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HOW MUCH LONGER WILL WE BE OUTCASTS? I simply cannot bear the oblivion
caused deliberately
by the psychiatric lobby
The misrepresentation
The misinterpretation
The mispresentation
The mistreatment
The denial
The arrogance
The foolishness
The ignorance
The negation
The pretence
The vested interests
The careers
The ideology
The fantasy
The imagination
The cruelty
The complicity
The compromise
The deceit
The laziness
The crass institutionalised destruction of my life and thousands of others.
And why?
I simply do not understand why my reality
And the sheer physical suffering
Of the most severely affected
Neurologically ill
Continues to be downplayed
Passed over
Left
Deleted
From adequate medical investigation
Proper medical respect
Interested and experienced biomedical practitioners
Accurate interpretation
And a proper medical health service
With ongoing monitoring and correct medical support
Why is this not happening
When the physical agony of my existence
And so many others
Is real and intolerable?
How can they keep getting awa…
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INTRODUCING THE POETRY OF RICHARD SMALLFIELD http://stonebird.co.uk/RS/index.html

Submerged
In black silence,
Entombed
In a bed,
There's a person
Inside;
But he's living
In dread
.” Extract from “The Hermit” by Richard Smallfield
Here I am, tearing my hair out, writing a detailed, professional response to BACME’s dreadful Severe “CFS/ME” paper. For how do you express the full horror of the situation we are in ? I don’t think you can, not in plain words. Our situation can only be expressed in poetry and song. I find I write best, not with a pen but with an electric guitar :
https://soundcloud.com/greg-crowhurst/seventh-circle-of-hell There are some, very, very rare poets who are so gifted in expressing the inexpressible suffering of ME, that their verse knocks you backwards and makes you want to read it out loud:
Staring –
Staring out at an endless wilderness of days
Searching for an end to this waste;
But only eternity's featureless expanse

Stares back at me.“Staring” by Richard Smal…