Stonebird

Stonebird Greg Crowhurst It is a great concern to see a leading Consultant being quoted in the Sunday Times apparently stating that: “ Doctors are failing to diagnose ME, through neglect, ignorance or cold feet because it is controversial. There are perfectly good Nice[National Institute for Health and Care Excellence] guidelines telling every GP how to diagnose it. ” http://www.thesundaytimes.co.uk/sto/news/uk_news/Society/article1464782.ece It is important, though, to view the Consultant's comments in context. The Sunday Times article was an exposure of the terrifying situation where families, who have a child with ME are placed under investigation by Child Protection Officers who “disagree” with their diagnosis. In that situation, the deeply flawed NICE guidelines (CG53), are probably better than nothing, nonetheless, condemned by virtually every ME organisation in the UK, they are widely considered to be not fit for purpose, for exampl...

1. You are very seriously physically ill. 2. Do not easily trust anyone. Trust needs to be earned and genuine knowledge and respect demonstrated.  3. Do not push yourself too hard or ignore your symptoms, thinking they will go away. 4. Neither give up everything completely unless it is necessary, because once given up it is unlikely to easily return. 5. Make sure that the prejudice, ignorance, laziness or incompetence of others do not stop you from getting thoroughly investigated medically.  6. Make sure that your symptoms are thoroughly investigated, incase you have something rare and treatable or not so rare and overlooked. If possible and reliable, get tested for other rare diseases, Hypothyroidism, Adrenal insufficiency, Pituitary damage, Lyme disease, mitochondrial disease, Periodic Paralysis, Anaemia, allergies, B12 deficiency, Vitamin D deficiency, any others relevant to your symptoms. They are not ME. 7. Do your own research to understand what might be cau...

I am scalded and withered By noise Like hot coffee Thrown carelessly On hopeful grass. My life is dumped on And destroyed in an instant Of crass ignorance And abusive noise assault. My life And all possibility Is crushed, Lost, Harmed, Tortured In a torment Beyond description. Noise breaks me up into pieces. It invades my every cell. It twists and screams and writhes around my nerve pathways Leaving them high pitched and demented Screeching down the nerve cells like a banshee Shaking me apart from within My muscles expand, contract, collapse, unable to sustain holding me together. Pain explodes, stabs, jerks, burns me inside and out. My mind is confused in a cacophony of autonomic chaos. My limbs, my face, my eyeballs, even my eyebrows, are totally paralysed. Noise, simple, rumbling, grumbling, tinkling, screeching, thundering, slamming, banging, crashing, noise Is my jailer, My torturer, My controller, My destructo...

Yesterday I posted a quote from my book, Severe ME, featuring Justice for Karina Hansen , about the need, from a carer's perspective, to be brave, bold, open, true, strong, alive. The words take on a whole new meaning when viewed from the person with Severe ME.  BE BRAVE: you have to be brave every day just to survive the onslaught and agony of unrelenting and complex symptoms.   BE BOLD: you keep having to stand up for yourself, speak up, boldly trying to get your needs understood and met, whether by yourself or even with an advocate, you still have to be bold enough to demand better.  BE OPEN: you need to be open to the possibility of healing and hope, even despite the torment of unending illness that never leaves you and finds a hundred different ways to torment you daily and the sometimes seemingly hopeless situation you find yourself in. BE TRUE: you have to be true to the truth of your very physical, overwhelming, unrelenting, all consuming illness, b...

The nothingness of nowhere. The ancient author of the Cloud of Unknowing describes how you can be blinded by the light in such a place. You can also be bored, bored beyond any comprehension of the word by the terrible emptiness. The nothingness of Very Severe ME is almost total. There is nowhere the person can go, there is nothing they can do to escape the ravaging hypersensitivity that has destroyed their life, their gut-tearing suffering, there is no comfort for them anywhere, no relief, no distraction. They have to be in it. It is inevitable that the carer will experience a hint of this place, as they try to sustain the person. The great danger, in any moment, is despair. Great courage and bravery are required to hold you both, carry you through.

You SHOULD NOT have to  :  endure condescension and dismissal by neurologists , doctors, nurses , social workers, not interested in your neurological symptoms.  endure inappropriate psychiatric therapeutic techniques, for your serious physical disease, that are almost certain to harm you .  endure the  promotion of a biopsychosocial approach to your disease, when it is not a mental health illness.  endure a complete lack of biomedical ME clinics and biomedical ME clinicians.  endure major ME Charity's actively collaborating with the psychiatric lobby .  endure lobbyists  who have vested interests being allowed to be influence your illness.  endure psychiatrists being allowed to promote a vague symptom of fatigue that is not the primary dysfunction in ME.  endure the inappropriate name- change of  your disease from ME to CFS. endure inconsistent, inaccurate criteria being used to poorly identify those who have...

Linda's suffering is way, way beyond my comprehension. I hold her, but that is not possible most of the time. When there are no words, no physical comfort possible, only being very still and loving is all you can do; when contact is agony any slight movement likely to cause pain and any noise a torture, stillness and love alone are all you have. However even that is difficult - and risky.