Posts

LET YOUR LIGHT SHINE IN 2019

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For all all. For everyone with ME. For the ones in agony. For the ones who cannot cope another moment. For the ones terribly close to giving-up. For the ones who have no voice. For the ones who have no one to understand or help them. For the ones who have been suffering for decades without a single second of relief. For the ones who are badly deteriorating. For the ones desperate for medical help, that is just not there. For the ones oppressed by lies and misinformation about their disease. For the ones that are dying. For the ones trying to make a stand. For the ones speaking up. For the ones in need of courage and affirmation. Never let it go out. Let your light shine brightly and powerfully. Never hide it away. Dig deep. Shine your mighty light. YOU MAKE ALL THE DIFFERENCE.

WE NEED TO NAME WHAT WE WANT TO REPLACE THE PSYCHOSOCIAL APPROACH.

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It is all very well people with ME demanding no more CBT and GET, it is all very well organisations around the globe writing to the WHO but that is not enough!
Not by a long shot. We MUST specifically NAME exactly WHAT we WANT to replace the awful, predominant psychosocial paradigm. Terrifyingly even if CBT and GET were withdrawn, people with ME, especially the most ill, are still extremely vulnerable to being misunderstood, disbelieved, denied even. That attitude, ask anyone, runs very, very deep in society, in families, in relationships. People with ME need an incredibly sensitive AWARE approach, one that specially acknowledges the FULL medical reality and impact of their disease, that respects and works in partnership with them and ACTUALLY meets THEIR need, moment by moment. As I explain below, for many years we have called that the MOMENT Approach. Rooted in a value system that believes in the integrity and equality of person-hood of the other, alongside a deep belief in the hum…

THE PARADOX OF CARING FOR PEOPLE WITH SEVERE ME : why a MOMENT APPROACH is necessary.

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This new Stonebird guide explores the paradoxes that may only become apparent when you try to engage with and care for people with Severe /Very Severe ME. At the worst of the most severe end of Severe/ Very Severe ME, where nothing is possible and everything is a torment or a torture, accessing much needed care, with so many broken communication pathways, is a massive challenge. It is not necessarily obvious as to how and when to interact safely with the person and in the best way. This Guide advocates a person-centred, moment-centred, moment aware approach to care. http://stonebird.co.uk/Paradox.pdf

CARING FOR SOMEONE WITH SEVERE ME : GREAT WISDOM AND SKILL IS REQUIRED.

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Within ME there are a range of complex physical symptoms and system dysfunctions, all affecting the 'how' and 'when' a carer interacts with the person; getting it wrong can lead to enormous harm! To care safely and effectively for someone with Myalgic Encephalomyelitis, carers absolutely must: 1. Be aware that ME is a neurological disease with multi-system dysfunction. 2. Always trust and listen to the person and their reaction. 3. Be sensitive so that they can gently approach and offer care to the person without causing distress or deterioration. 4. Adopt a moment - by - moment, flexible approach to care, where the carer is willing and able to wait patiently and return later. The response of people with Severe ME is not always predictable; often the opposite rather than the expected occurs. This must be FULLY understood by the carer. 5. Be aware that it might not be possible, in any one moment for the person to receive the help they need, because they are so physicall…

WHAT DO YOU DO, WHEN YOUR WIFE'S LIFE IS TORN APART BY VERY SEVERE ME ?

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You care, you seek answers, you speak up, you do your own research, you find a way to muddle through
You find a way to help her even though the slightest touch makes her cry out in pain, the slightest movement causes intense mental confusion, mind blanking deterioration, shaking muscle spasms, triggers hours or days of excruciating total or partial muscle paralysis, extreme emptying weakness, increasing her already heightened hypersensitivity and pain still further, until even your breathing too close to her will hurt her.
You see her being harmed by ignorance.
You see her disappearing from the world.
You see her struggling to bear the unbearable, with no pain relief whatsoever and an intolerance to drugs.
You see the illness not just take her body from you, but her mind badly affected, her sight diminished, her creativity trapped inside, her talent unexpressed, the possibility of motherhood lost for her; her tears tear at you.
You hold out a hand if she can bear to tolerate your presence o…

LA EM ME MANTIENE OCULTA

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La EM no es fácil de entender ... ayuda a las personas a entenderla. La EM se está representando erróneamente como fatiga crónica ... asegúrate de que la representas como una enfermedad neurológica. La EM es una enfermedad compleja y las personas más afectadas son las más ocultas y mal entendidas ... asegúrate de explicar la realidad por ti mismo y por ellas. La EM está siendo comprometida en sentido opuesto... nunca transijas, hay vidas en juego. Debes saber que padeces una enfermedad física que no está recibiendo el apoyo médico que necesita y que merece, porque simplemente está siendo encubierta. Sigue buscando respuestas. ¡Nunca sabes si has estado mal diagnosticada y podrías recibir tratamiento! Todos merecemos el apoyo médico correcto y los recursos necesarios para la gravedad de nuestra enfermedad. Esto desgraciadamente no se da actualmente. Lo más importante es cuidarse y exigir un nuevo enfoque médico para EM. Vamos a poner al descubierto la EM de una vez por todas. Exijamos…

ME COVER UP

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ME is not easy to understand...help people to understand it. ME is being misrepresented as Chronic Fatigue...make sure you represent it as a neurological disease. ME is a complex disease and the most severely affected are the most hidden and misunderstood...make sure you speak the truth for yourself and them. ME is being compromised away....never compromise, lives are at stake. Know that you have a physical disease that is not getting the medical support it needs and deserves, because quite simply it is being covered up. Keep looking for answers. You never know if you have been
misdiagnosed and could get treatment! We all deserve correct medical support and correct provision for the severity of our illness. It is disgracefully not there currently. Most importantly look after yourself and demand a new medical pathway for ME. Let us expose the ME cover up once and for all. Let us ask for a new biomedical pathway for people with neurological Myalgic Encephalomyelitis. Nothing else will s…