Stonebird

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 m uscle 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...

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 ...

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....

Stonebird Greg and Linda Crowhurst There are two approaches to ME. One is the WRONG approach: A Biopsychosocial response, based on false ideology: * Warped * Redundant * Obsolete * Negating * Grossly offensive WARPED - the misinterpretation of ME as a Functional somataform disorder caused by wrong illness beliefs and lack of exercise, leading to deconditioning - if only it were that simple ! REDUNDANT - providing Fatigue Clinics , calling them CFS/ME clinics and trapping people with ME in a service that does not see or meet their need. OBSOLETE - the psychiatric therapies promoted as treatment for ME, which are totally inappropriate and potentially harmful. NEGATING - the leaving of people with ME, without adequate understanding, help, support, recognition, explanations, treatment or hope of recovery. CROSSLY OFFENSIVE - the denial of people's physical reality, their personal integrity, their sense of self, their physical need. The other is the RIGHT ...