Stonebird

"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 !

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 ter...

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.

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...

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...

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 St...

GRADED ACTIVITY MANAGEMENT (GAM) is profoundly dangerous !! The person with Severe ME is not simply fatigued but is experiencing multiple severe symptoms, serious system dysfunction and complex, mostly ignored, pathology. Nothing, for them, is controllable, predictably repeatable or necessarily safe to repeat. Every single thing has the terrifying potential to push the person to unimaginably worse symptom experience and health deterioration. For any intervention there should be a thourough Risk Assessment, based the very real dangers of deterioration. The fundamental assumption that there is no underlying pathology, however, undermines any possible risk assessment, even if performed. The lack of a Risk Assessment is a glaring omission in the new BACME document purporting to be about Severe ME yet not describing G93.3 Myalgic Encephalomyelitis at all. It needs to be challenged by every charity and patient group.

The BACME Severe CFS/ME guidelines are a huge concern because health professionals will think they are about Severe Myalgic Encephalomyelitis. However if you read the detail, you will clearly see that this is not about the neurological disease ME ICD 10 93.3 . The worry is that it will be interpreted as so. Rather than proper medical tests and treatment BACME's new document on Severe "CFS/ME" emphasises Graded Activity Management as an effective treatment, able to lead “ to improvement, and even recovery in some”. The Guideline places the burden of checking for pathology squarely upon GP's shoulders, with expert input from local fatigue clinics who, if they follow the BACME Guideline will believe that ME is fatigue without pathology. The diagram  above sums up the awful situation people are in. I am currently working on a detailed response to the BACME Guide. What really gets me, is that we have been warning about the risk of ...

When you cannot move or get out of bed and no part of you is not screaming with infinite agony, but the doctors are not interested and tell you to your face that they do not believe you are physically ill, you suddenly reach an almost heart- stopping, gut wrenching moment of unbelievable clarity and awareness; a shocking epiphany. For you realise that you have slipped out of normal existence and are living/ operating on a totally different level, way below normality and incredibly, devastatingly bizarre, the only way you are going to survive and cope is by going within yourself and holding on to your essential self. It is to know with all your being that no matter how much you want this unbearable, intolerable nightmare of unimaginable, indefinable pain to stop, the truth is, that it is real, it is in all levels of your being . Every moment of your life is going to be defined by this. You are going to have to be incredibly strong to endure it, unimaginably brave to bear it, to...